The Power of a Parent Match
When you get a new diagnosis for your child that you never expected, it is life changing. Isolation and grief come flooding in along with the questions of why me? Why us? It can feel like no one else knows what is going on and that is where a parent match comes in and saves the day.
Finding another parent that knows those feelings and has had similar experiences can mean so much. I didn’t get individually matched when we got our diagnosis for my daughter but I found the support through groups such as Holland, or the Autism support group helped so much. I have made friends that I never would have met otherwise and they are some of my best friends. After having received this support I wanted to share with other parents that might be getting a new diagnosis- to help them through those questions and feelings I had when we were new on this journey. I attended Parent to Parent’s Helping Parent Training, and then about a year ago, I was matched with a parent that had received a new diagnosis for her child that was the same as my child’s. Even though this mom lived hours away, we were able to connect via text. Over the last year we have kept up texting when something was going on or that mom had a question. Being able to share my experience or give validation to how she is feeling really makes me feel great as well, and it also reminds me that there are more people out there that are going through the same thing. Awhile back I got the privilege of meeting her as they were in town for an appointment. When I walked in she gave me a hug and it was like seeing a long lost friend that I haven’t seen in years. We sat there and talked for almost 2 hours about different things with our children and what was new or going on. Meeting her just brought joy to my life and I could see the joy in her face of being able to talk to someone that understands. The next morning I got a sweet text from the mom thanking me for meeting her and talking with her. She thanked me for my kindness and friendship. This connection and match has meant just as much to me as it does to her. I have made a new friend for life. ~~By Danielle W.
Spanish versión: Mi nombre es Flor Yenis Flores, soy casada tengo dos hijos, una niña y un adolescente que el siguiente siclo escolar va entrar a la high school.
Desde que me conectaron con un padre Ayudante, con la cual considero que es muy empática, amable y siento que tiene mucha experiencia con la labor que hace con nosotros y eso me impresiona mucho, tanto que me hace sentir mas orientada y confiada. Me da mucho gusto tener alguien con quien platicar acerca de nuestros hijos que tienen el mismo diagnóstico. Además, hay que considerar que, tener a alguien con quien hablar y confiar que además habla el mismo idioma, que entiende nuestras costumbre hace una gran diferencia. Ahora me siento más tranquila, que no estoy sola y que no soy la única, la verdad me siento mas consolada. Entiendo que, por el momento no podemos reunirnos en persona por el covid y también porque nuestros hijos están en casa y estamos mas ocupadas, pero saber que puedo hablar con mi padre ayudante la vida me es de mucha ayuda, lo cual agradezco mucho.
My name is Flor Yenis Flores, I am married and I have two children, one little girl and a teenager who is going to start high school the next school year.
Since I was connected to a Helping Parent, with whom I consider very empathetic, kind and I feel that she has a lot of experience with the volunteer work she does with us and that impresses me a lot, so much that it makes me feel more oriented and confident. I am very happy to have someone to talk to about our children who have the same diagnosis. In addition, we must consider that having someone to talk to and trust who also speaks the same language, who understands our customs, considering the difference in experiences each of us have makes a huge difference. Now I feel more calm knowing that I am not alone and that I am not the only one, truthfully I feel more comforted. I understand that, at the moment, we cannot meet in person because of COVID and also because our children are at home and we are more busy, but knowing that I can speak to my helping parent is very helpful for which I am very grateful.
“As a parent that has spent the last decade walking through the IEP and 504 process I have learned so much. Sometimes these lessons have been painful. As a helper parent I love that I can share what I have learned with other parents who are new to the IEP process. My goal is to be the person who walks alongside these families and let them know they are not alone. As I sit with them I feel great joy in seeing moms and dads become empowered just by having a helper parent in their corner.
I also enjoy the fact that as a helper parent I can choose when I volunteer giving me time to focus on taking care of my son, when he needs me, but still help out when I can.”
My wife Sarah Coomber and I adopted our son Daniel from India at the age of 3. As Sarah and I have journeyed through the process of finding the support we need to care for a child with special needs, one thing that’s been particularly helpful is the dad’s conversation group that Jeremy Van Pelt and I started in early 2019. It has truly been a rewarding experience to connect with and learn from other dads who are experiencing similar parenting situations. And having recently participated in Parent Helper training, I now have a fresh lens with which to offer support to the other dads that I come into contact with.
Thank you for the training and equipping that you are doing in this important area! — Jon Suomala
Pictured: Jon Suomala and family w/ Jeremy Van Pelt
and family at Camp Prime Time summer of 2019.
“We are in a small rural county, spread out and relatively isolated. Having the ability to share knowledge, from me to parents, is invaluable. Gaps in knowledge are being filled, families are becoming aware of and making use of resources, the providers are becoming more aware that there is a need for their services, and friendships are being forged.
I’m very grateful for the opportunity to participate in Parent to Parent.”
The Power of a Parent Match – Connections all across the State~~Danielle Woodcock (Yakima County Parent to Parent)
When you get a new diagnosis for your child that you never have expected, it is life changing. Isolation and grief come flooding in along with the questions of why me? Why us? It can feel like no one else knows what is going on and that is where a parent match comes in and saves the day. Finding another parent that knows those feelings and has had similar experiences can mean so much. I didn’t get individually matched when we got our diagnosis for my daughter but I found that support through groups such as Holland and the Autism support group helped so much. I have made friends that I never would have met otherwise and they are some of my best friends. After having received this support I wanted to share with other parents that might be getting a new diagnosis – to help them through those questions and feelings I had when we were new on this journey. I attended Parent to Parent’s Helping Parent Training, and then about a year ago, I was matched with a parent that had received a new diagnosis for her child that was the same as my child’s. Even though this mom lived hours away, we were able to connect via text. Over the last year we have kept up texting when something was going on or that mom had a question. Being able to share my experience or give validation to how she is feeling really makes me feel great as well, and it also reminds me that there are more people out there that are going through the same thing. This week I got the privilege of meeting her as they were in town for an appointment. When I walked in she gave me a hug and it was like seeing a long lost friend that I haven’t seen in years. We sat there and talked for almost 2 hours about different things with our children and what was new or going on. Meeting her just brought joy to my life and I could see the joy in her face of be able to talk to someone that understands. The next morning I got a sweet text from the mom thanking me for meeting her and talking with her. She thanked me for my kindness and friendship. This connection and match has meant just as much to me as it does to her. I have made a new friend for life.
Parent to Parent USA website http://www.p2pusa.org/
Parent to Parent is a Help with Advice and Resources I feel like I can usually receive advice/resources if I feel stymied about where to turn.
~~Anonymous Parent (King County)
Attending a presentation by the Arc, I learned about my rights and benefits for my child, and was able to better advocate for my child at school.
~~Anonymous Parent (King County)
Thank you for presenting…IEP Transition Plans at the Kent School District
We received this email following a presentation on IEP Transition Plans at the Kent School District Special Education Advisory Committee (SEAC) Parent Night, “Thank you for presenting to our SEAC group last evening on IEPs and Transition and for making the drive on a Monday evening to Kent. It was the best presentation yet that I have seen, chock full of important information for both parents and staff. I was pleased to see parents of all ages in attendance, and glad that there were many questions. Far more interactive than our earlier presentations have been.”
“I enjoy supporting families and when possible, share the possibilities.”
~~ Debbie Chapman (Lincoln/Whitman Counties P2P) September 2018
“I feel that being a part of Parent to Parent and having participated in Parent to Parent (P2P) for so many years, has impacted my family tremendously. Parent to Parent has opened so many doors with services and resources, knowledge. Our family has been able to experience so many different experiences. We go out in our community confidently and with the knowledge that we are not alone. We have made many friendships and so have our children, too.”
~~Fabiola Solis (Skagit County P2P) September 2018
Our Smooth Talkers program has been an incredible success. In fact, in the fall of 2017 we expanded the program to 3 sites across King County, East King and South King for English-speaking families, and South King for Spanish speaking families. Here is an email from a mom whose daughter participates in this program. “I wanted to let you know that my daughter has been asking me about Smooth Talkers using her talker, on more than one occasion she pressed go & Smooth Talkers and held it up with questioning eyes. It would seem she’s been missing it.”
Great Advice and Help from a Mom with Twins
I wanted to meet another twin mom with one typical twin and one twin with Down Syndrome. The Arc was able to find a Mom willing to meet with me who gave me loads of great advice.
~~Quote from anonymous parent feedback survey
My daughter was born with complex medical needs. I took our Helping Parent Training when she was 2. Became a P2P employee when she was 4. P2P has helped take my grief and channel it to help others. Our family is stronger because we know the positive impact of parent connection. We do not have any specific challenges but always navigating raising a child with a disability. I’m always pusing myself to connect more with newly diagnosed families and continue that connection.
~~Melissa Abraham/Whatcom Parent to Parent
“Just wanted to send a quick note letting you know how much I enjoyed the training (and the women) yesterday. It reminded me of just how far I’ve come along in the journey that is Jack. What a ride! The moms yesterday (including you) are an amazing representation of this community. Thank you!!”
~~After a Helping Parent Training our P2P Coordinator received this email…
I Found a Treasure in a Parent Match through Parent to Parent
Eighteen years ago I received a call from Tracie at Children’s Village asking if I would reach out to a new mom whose son had Down syndrome. I guess you could say it was the beginning of a “beautiful friendship”. As corny as that may sound, it is so very true. As many of you reading this article know, having a baby with special needs can be overwhelming. The emotions that race through you can take over and the responsibilities that fill every waking moment can make you crazy. I experienced that myself and was so grateful to be able to reach out to another mom and try to help her through when she found herself in the same position. Megan and I would never have been friends had we not been blessed with our sons JJ and John. We lived in very different worlds with very different interests, but through the years we have become the best of friends; at times we have fought for each other, laughed until we cry at ourselves and our sons, complained about inequalities and watched each other’s backs. I have shown Megan the fun in a sledding party with bonfire and hot dogs, and she has taught me what the beginnings of a blue ribbon sweater looks like when she starts to knit it. As a teach at our boys’ high school, she keeps me up to date on all the important events and news. I do all the driving to the boys’ sporting events with Special Olympics, because she hates to drive. You cannot put a price on something like a friendship and as I look back 18 years, I think of the call I got from Tracie and I am so grateful that she made it. I am also grateful for everything Parent to Parent and Children’s Village has offered this community and our family. I am so grateful for my dear friend, Megan.
~~Beth Palmer (Apr/May/Jun 2018 Issue 74 Yakima P2P)
“I can’t thank you enough for all your incredible advice and wise direction for our family. We are truly indebted to you for the path we are now going to travel down – so excited!! Thank you for taking the time out of your busy schedule to help us out. You are such a new delight and joy to me as I am now on the hunt to get outside help for our kiddos.”
~~Coffee & Conversation (A Program in Kent to provide peer support to parents.)
“Thank you all SO much for taking the time this week to come share with us. It is really powerful to be reminded of the experiences parents of kids with disabilities are going through. Our Vice President of Finance attended and afterward came to my office and said how moved she was and how her eyes were really opened. She hadn’t realized how isolating it can be, or how often you have to advocate and defend your child. She was so grateful for your stories. I’m sure your stories will make an impact on all of us and will help us improve how we interact with families. Thank you!”
A Chinese-immigrant single mother of a child with autism was referred to The Arc through HopeLink. When she first met with our Parent to Parent staff, she cried for two hours expressing her sense of isolation, fears, and experiences of mistreatment from other professionals. With support from The Arc she accessed DDA services including respite care and was also matched with a Mandarin-speaking Helping Parent. She now participates in parent groups and events with her Helping Parent mentor, and while times can still be tough on occasion, she is developing a network of support.
For the first time, The Arc of King County provided a Family Connections: Helping Parent Training specifically for grandparents of people with intellectual and developmental disabilities. Following that training in January, we received this email, “I just wanted to thank you and congratulate you on the grandparents of special needs kids workshop you held on Sat. My Mom went and said it was fabulous.”
You help me find resources and possibilities for my daughter’s future.
~~ Anonymous King County parent
I don’t feel like I’m alone in this journey.
~~ Anonymous King County parent
Parent to Parent has been a life line for me all of these years.
~~ Anonymous parent
You are doing well informing parents. I love the Arc web site
~~ Anonymous King County parent
At the beginning of the year my (then) fiancé and I were in such a terrible place in our relationship. Family outings were a struggle. Our home life was busy and complicated. We couldn’t agree on parenting our 3 year old son, who has Autism and sensory processing disorder. This diagnosis came with so many new things, we didn’t know where to start or who to turn to for advice. Then one day I got an email saying that a new Holland session was starting in the Spring. I was hesitant to sign up for this class, but in the end, I decided I didn’t have anything to lose and I called to register. When the day came to start Holland, my fiancé and I were greeted by the staff with welcoming arms. I knew then that I had found my home. In the group we discovered that we weren’t the only ones going through this and we got a lot of help along the way. When we graduated from Holland we came out stronger as a couple and as parents. My husband could finally understand our son on a new level, and was able to communicate and interact with him in fun and successful new ways. We were married this fall. If it wasn’t for Holland, I’m not sure where our relationship would be today. Not to mention I gained some awesome new friends from the group as well. I can’t thank Parent to Parent enough for everything they have done for me.~~by Samantha J (Yakima)
I wouldn’t have been able to provide for my child in a well informed, healthy manner without the classes, information, email parent support groups. As lonely as I can sometimes feel in the battle of managing life as a caregiver of a child with disabilities I had a place to go, I was always just an email away from a group of people in which at least one would reach out with help or heart felt reassurance.
I can’t imagine where I’d be without the Arc.
~~Anonymous King County parent
“People keep saying education shouldn’t depend on your ZIP code. It’s thrown around a lot in terms of kids in poverty, but it’s also true for kids with disabilities. It shouldn’t depend on your ZIP code,” but it does, she said.
~~See the article – Huffington Post, 12/09/2017“For Students with Disabilities, Quality of Education Can Depend on ZIP Code”
~~ Rebecca Klein
“My story of who I am, who is my family and what is our biggest challenge? After a long term marriage, I became a single Mama and sole provider 6 years ago. This event created challenges for my two kiddos and myself, too many to name. After spending the last three years in commission only, high level sales, I got really honest with myself about the kind of “work” I wanted to spend my time doing, and not knowing if I would have a partner again, I knew I needed to find a sense of fulfillment that would sustain me, and bring a new and different sense of purpose. Fast forward to 7 months ago. I came on board with The Arc of SW WA as the development coordinator, and quickly found use for the sales and business experience I had acquired over the years. I felt proud that my skill-set was contributing to the service of those that experience developmental disabilities, but it was with the addition of the P2P coordinator piece that I felt inspired! As the Mom of a now 23 yr old son who has fought his way through diagnosis of low IQ, severe communication disorder, and “global disabilities” I am so grateful that it’s me on the other end of the phone as the calls for help and support come in. More often than not, the calls are from single parents processing diagnosis, the complexities of the DD world, IEP’s, work, and at times on the brink of homelessness as well!” “The role of Parent to Parent coordinator is an honored one. I consider the vulnerability of these families as they share their stories a gift, and I am happy to engage this part of my heart as I serve here. As I come in touch with the ever growing need for supports, I am motivated to stay up-to-date on local resources that will make figuring out the next “right thing to do” more obvious, and more easily identifiable.” “Time will tell what impact I am able to have on my community as I have only served in this way for about 8 weeks. If Anything, I am the one who gets to go home feeling happy to be part of the ripple effect of so much good.”
~~Bobbi Bjork (Clark County P2P)
I HAVE ALWAYS BEEN AN ADVOCATE FOR BEING AN ADVOCATE. Parent to Parent has given me a platform to reach parents and the tools I needed to be a credible resource. I am the mother of five total kids, two are grown up and on their own and three are still at home. Our biggest challenge is finding the time and money to do everything that we’d like to do. I have a baseball player who also wants to take music lessons, dance lessons, gymnastics and coding. I have an artist who also wants to learn piano, drums and gymnastics. I have a drummer who is starting volleyball and also wants to take art, gymnastics and dancing. We would all like to take vacations (we’ve taken two in 17 years) and my husband and I would like date nights. Since starting as a P2P coordinator, I have been to many more meetings and trainings with groups that I didn’t even know about. I have gained more knowledge about our community and resources. Even though I had knowledge in many areas before starting as P2P, now that I have a title, I have gained credibility and more people are more readily reaching out to me for information. I feel very confident now because I am surrounded by knowledgeable people that I can go to for information and guidance if I don’t have the information that someone is looking for. My family misses me at home, and they have been forced to take on more household chores. They don’t like it, but I don’t mind. �� I am still so new at this position and am still in the planning stages of building my programs and reputation, that I don’t know that there has been a community impact yet, but I hope to be impactful soon!
~~Shelly G (Spokane P2P)
“Parent to Parent has helped me in many ways. I have made connections to supports and resources that have been tremendously valuable to me. I have made friendships that I could not imagine my life without. I have found my passion and an outlet to express myself. “Since my involvement in Parent to Parent I have had an opportunity to build capacity person/family centered supports in my community.”
~~Sara Palm-Sons (Lewis County P2P)
My name is Lacey Cairns, I’m a single parent with 4 kids. Aidan is 20 currently serving in the Army Reserve, a full time college student, works in an adult supported living group home as a caregiver and loves to travel the world, Alex is 18 and has Lennox Gastaut Syndrome, Autism and is nonverbal. He has lived in a supported living residential group home since he was 9. We are blessed he only lives 5 minutes away from our home and that his older brother and I work for the same agency that houses him. Zach is 17 currently a high school student and loves to volunteer and Chloe is 12, she has Autism, Epilepsy and Major Neurocognitive Disorder and going through an array of testing to confirm a diagnosis. She has regressed significantly this past year making her my biggest challenge. It’s been emotionally challenging watching her lose skills and abilities across the board and become a whole new person. In a lot of ways this has been like a refresher course in what I went through with her brother and has given me a different perspective. I know that what I’m going through now will have a positive benefit somewhere down the road. The last 2 years that Alex lived at home when life was overwhelming and unbearable I would often tell myself this too shall pass. I cannot be the only parent going through this. There has to be a reason or purpose why I’m experiencing this. There is always hope…am I right? Those were my answers when I would ask, “Why me”? Why Alex? This isn’t fair, when I would rant and rave to myself as I didn’t have anyone to talk to about what I was going through. I knew that if I ever got to a point where I could breathe, I wanted to help other families going through what I was going through. I didn’t want them to have to endure the isolation and desperation. I didn’t want them to feel alone. I wanted to give them a glimmer of hope. Working for The Arc of Cowlitz County as the Parent to Parent Coordinator and Individual and Family Advocate has been highly therapeutic for me. Some of my first cases were with families much like my own. Once I could see how sharing my story could positively impact a family, I was then able to start my own healing. I have been working for The Arc of Cowlitz County for 7 years and absolutely love what I do. I believe things happen for a reason, you may not understand exactly why but what you experience serves a purpose or a lesson. You can turn a negative into a positive; it’s just a matter of perspective. 7 years ago I was presented with an opportunity to turn a highly stressful, challenging and lonely situation into a positive one. I was able to take those experiences and make them meaningful and give them a purpose.
~~Lacey Cairns shared by permission
“Not sure if I said thank you, but I made a call to Melissa today at Parent to Parent and emailed Angela and Jamie. Melissa was super helpful. Gave me a little more hope. Thank you so much! And it would be wonderful to connect with other siblings also.”
~~“From an adult sibling who is guardian for her brother now.” Connected her to the Adult Sibling Network getting started.
January 2015 for my family was the most exciting and surprising time in our lives. My husband, Levi, and I just found out that after about 6 years of hoping for another child that we would give our daughter Ali who was 9 at the time a sibling. We were over the moon.
I had bought a cute “Big Sister” shirt to surprise her with after giving her a card and a picture of the ultrasound at 10 weeks. Our check-up went normal, everything looked great. Of course I had asked the same questions as I had with Ali, I was a little more concerned since I was older. I was 37 which is not old, but for starting over it felt like it was. The doctors gave me the statistics of things that could happen, since none of the scenarios ran in my family, we never really worried.
1 in 695 babies are born with Down syndrome; that is a .001% odds – that is lottery odds; my family has never won the lottery. Well we won the lottery this time! At our twenty week check-up we were excited to find out the sex of the baby, it was a boy; we also saw only 3 chambers of the heart and were referred to UW. We went to our first University of Washington appointment hoping for it to be just a bad view, it wasn’t. My husband and I sat down in a cold room staring at each other until the news was broken. “Your son has a congenital heart defect, and…..markers for Down syndrome”. We both cried, we were heartbroken.
After a rough weekend we decided that it was time to move forward with our news, my husband thankfully was the stronger of the two. We were connected with the Parent to Parent at Children’s Village while we went to appointment after appointment, and then, at 32 weeks, it was 2 weekly stress tests and then the news of having to have the baby in Seattle, 200 miles away from home. I had a really rough time, I couldn’t see past the diagnosis. I didn’t think I could do this. I remember one day at work I got a phone call from another mom of a child with Down syndrome. I cried talking to her. She just listened. It was probably the first time I felt like someone “Got it”.
Colton Reid came barreling into this world on August 30, 2015 after a C-Section. When I saw him, I just knew it was going to be ok. He was rushed off to Seattle Children’s due to medical issues; he surprised UW doctors a little. We spent 30 days at Seattle Children’s before we came home. Colton had his heart repair in January and we stayed another 32 days at Seattle Children’s. One last bump in the road was when Colton was airlifted to Seattle for our 3rd longest stay due to lung issues.
Finally, after all of those stays, we got to start our life with our 5 month old baby boy in Yakima. The hardest thing I have ever done in my life has turned into the most rewarding. Children’s Village has helped me connect with other parents. One new friend I just recently connected with, and I found out we were pregnant at the same time with our special babies. Our children are about two weeks apart.
Colton just turned the big “One”. We had the biggest celebration for him and for us. We made it a year. We now have a little “ginger” one-year-old boy who loves squash, his dog Arnold, and his big Sister Ali with all his heart. He can roll over and is working on standing, doesn’t let anything stop him, who says momma, da-da, bye-bye, and is currently working on his parade wave.
Everyone falls in love with him where ever he goes. He is a spitting image of his dad and has my toes…and also Down syndrome. We attended the Children’s Buddy Walk in October for the 2nd time. I enjoy meeting other families and supporting Colton. We recently graduated from the Holland program that is offered through Parent to Parent.
We have proudly established Colton’s Crew, who has been there every step of the way cheering us on, and our new found friends who we have met through Parent to Parent that are now part of our lives. I don’t know where I would be today without all the love and support of the families who reached out to me and Amy from Parent to Parent. They helped me through my darkest days, and I am so glad. We are not alone anymore-connected to Parent to Parent/Children’s Village and many other parents.
My story of who I am, who is my family, and what is our biggest challenge. As a little girl, my three most important goals were to someday marry a man that I am head over heels in love with, become an elementary school teacher and a mother. And I did! My husband, Bryan, and I recently celebrated our 25th anniversary. We have three AMAZING children who mean the world to us. And, I taught elementary school for 6.5 years before starting our family. Our biggest challenge is slowing down the hands of time. How has P2P helped me with participation, knowledge, relationships, experience and confidence?P2P has forever changed me. Never did I believe I would be fully immersed in the special needs world, meet such incredible people or grow as a leader taking issues/stories all the way to Washington, D.C. As a high schooler, I was quite intimidated to do any public speaking. Today, I am no longer willing to stay quiet on matters that need attention. P2P continues to offer me opportunities to grow personally and professionally. How has this impacted my family and my community? I am grateful for the opportunities P2P has afforded my family. We’ve been able to access resources for our daughter that we wouldn’t have known about otherwise. We’ve made deep connections with other parents also on a similar journey. But, most importantly, we’ve been able to give back to others and, hopefully, make a difference to someone else.
~~Heather Milliren – Skagit County Parent to Parent Coordinator October 28, 2016 (Used with permission January 17, 2017.)
My family consists of two amazing kids, both with their own struggles; and their father, my husband of over 20 years. Quentin will be 16 (with a driver’s license) on February 1st. Quentin has been diagnosed with Tourettes, ADHD and anxiety disorder. Anxiety is his biggest hurdle right now. Zoe Rose is 13 and rocks an extra chromosome. Her struggle right now is understanding her body changes and hormonal outbursts. I used P2P when my daughter was born, all those years ago. I felt a need/desire to pay it forward and help future generations on their journey. P2P has given me confidence to be heard, for our families, in our community, outreach for support and resources for our families. The knowledge that has come with this position is invaluable to not only my family but those that desperately need the up-to-date information. It is an ongoing changing world and it is up to us as leaders to keep our family voices heard. P2P gives many that platform.
~~Tiffany Wheeler Thompson – Island County Parent to Parent January 26, 2017
My story of who I am, who is my family, what is our biggest challenge. I have been married for 23 years and we have 2 teen daughters, one in high school and the other in college. After receiving my daughter’s autism spectrum diagnosis, my family felt very overwhelmed and isolated. It has been a challenge to find balance and we have learned patience and gratitude along the way. Looking back, I am amazed at how far we have come together as a family.How has P2P helped me with participation, knowledge, relationships, experiences and confidence?I have worked as a Parent to Parent Coordinator at The Arc of Snohomish County for nearly 3 years. I have been able to expand my knowledge and understanding of disability services and supports through trainings, workshops, and by working together with an amazing team of Arc staff and Parent to Parent Coordinators throughout our state. I am able to help connect families with information and resources about their child’s disability, special education, social & family supports, disability services, and community resources. I have the opportunity to help families fell less isolated and more empowered through Helping Parent matches, Arc support groups, Sibhops, Lego Club, Connecting Families events, and Arc Speaker Nights. Personally, I have developed confidence in facilitating groups and communicating with professionals and speakers to help educate our Arc families. I am grateful for the friendships I have formed and the deeper level of compassion and understanding that our Arc families and my colleagues have taught me. How has this impacted my family and community? Parent to Parent was a natural fit for me as I was able to build on my personal experiences and obtain the training and tools needed to support other families who have children with special needs. I now have an increased understanding of disability services and am able to better navigate systems and advocate for my family and the families we support at The Arc of Snohomish County. But most importantly, I am able to help families connect with each other and realize that they are not alone!
~~Alaina Kube, Parent to Parent Coordinator/The Arc of Snohomish County
“Parent to Parent is a ‘life line’ for new families entering the world of special needs. When a parent learns his or her child has Down Syndrome, Autism, Cerebral Palsy, or another developmental disability, their world suddenly becomes very small, and sometimes very dark. Parents struggle to adjust to new information that will impact their child and family for the rest of their lives. Research has shown that what helps these families is compassionate support- from other parents who have ‘been there’; who can share stories from years ago when their child was first diagnosed, to stories from today when their child is thriving and parents are learning to navigate systems and become a strong voice for their child. Unlike other services for young families raising children with special needs, Parent to Parent support is not reimbursed by insurance companies. Funding is minimal and sporadic across counties in Washington state. Equitable access and stable funding requires Olympia’s attention and support.”
~~Tracie Hoppis, Yakima Parent to Parent program
South Sound Parent to Parent started in 1987 and we currently serve Thurston and Mason County. We exist to help families raising children and supporting adults with disabilities. We do a need’s assessment every year and the consistent thing that parents and caregivers tell us is that they feel isolated. Sometimes this isolation comes from being overwhelmed, feeling like no one else is sharing the same experience or simply being embarrassed by their child’s behavior or just too tired to go out. We provide one on one parent matches with trained parent mentors, support groups, recreational activities, educational workshops around effective communication and navigating big systems, emotional and informational support, a helping hand and a listening ear. From 2012 to 2014 we fielded over 13,000 calls from parents looking for some sort of support. In the previous two years, we took about 4800 calls. The number of families who are reaching out and seeking help is sometimes staggering and we are doing everything we can to keep up with the demands and continue to provide quality services. Our goal is to ensure that no family goes without services. Parenting is hard work and with the added challenge of navigating the world with a child who has a disability can make it even more difficult, we want to ensure that we can make it as easy as possible. We respectfully ask that you continue to support and enhance Parent to Parent programs across the state.
~~Kim Smith, Executive Director South Sound Parent to Parent & Testimony given during the 2016 Legislative Session.
Parent to Parent is a vital program for families raising children with special needs. I am the Kittitas County P2P Coordinator and have had this position for 13 years. When my son was diagnosed with classic autism and epilepsy over 15 years ago, P2P helped connect me with other families who were raising special children, shared disability resources and provided educational workshops so I could understand the multitude of agencies and programs that we would need to navigate for our son. Raising special children is very wonderful and rewarding……it can also be hard and isolating. Having other parents to talk to and get the emotional support we need, is vital to having healthy and resilient parents who can advocated effectively for their children. Please support P2P. It needs to be statewide to help ALL of Washington’s special families.
~~This is the testimony that Michelle Williams, Kittitas County, gave to her Legislators in January 2016 when she commented on the P2P bill.
“Parent to Parent was a lifesaver for me and my husband during the beginning years of our daughter’s diagnosis. The events and support allowed us to meet other families and feel connected, laugh and have fun. We also found other parents had wonderful ideas and tips. I feel grateful to have connected to the program and wish there was a Parent to Parent program in every County.”
~~Betsy from King County
“Living with a child on the spectrum is like hunting for a light switch in the dark and you can t help but hope that someday you will be able to find that switch and turn it on to lighten your child s path to independence.”
~~Parent from Walla Walla P2P Program
October is both Disability Awareness Month, and Down Syndrome Awareness Month. Awareness is a life or death reality for children with Down Syndrome. Molly was born January 29, 2003. She’s one of the lucky 15% of babies with Down Syndrome to be allowed a live birth according to Global Down Syndrome Foundation statistics. I wish I could go back to the mom of eleven years ago and paint the beautiful picture that is Molly’s life and reject the dismal picture painted by our society.In the hospital after Molly’s birth I was having a hard time with the “what ifs.” One of the pediatric nurses in Spokane said firmly, “You don’t know what the future hold for ANY child. Don’t put a box around Molly. Let her show you what she can do.” Molly, like most kids with Ds had an accompanying health problem, in Molly’s case, Herschprung’s disease (corrected with colon surgery when Molly was three weeks old). Molly’s first few weeks were a medical rollercoaster ride; it was a ride that redirected my role as mother…to advocate. Molly is now 11. She has been a source of entertainment that only a Molly boogie, or off-tune karaoke of “Let It Go” can bring. She has an adoring family. Her two sisters keep me in check especially if they feel I am spoiling Molly by telling me, “Molly can pick up her stuff too!’ Molly has an older sister Madelyn (14) and a younger sister Chloe (9) who are the unsung heroes in Molly’s life. One day after school last year, Chloe, in tears, said, “Molly doesn’t hug me long enough at recess.” Molly will be in fifth grade this year with Mr. Lux (aka Mr. Yucks, one of her favorite people). His daughter Whitney was P2P Volunteer of the Year in 2013.As parents, Lawson and I worry about inclusion, puberty, and the tricky balance of pushing too hard or not enough. Molly is reading at a Kindergarten/First Grade level. She loves her iPad and our dog Gus. She loves chickens and elephants. She loves her friends and being the mother hen to younger cousins. Can you catch the theme? Molly loves. I am only aware of three things Molly does not love; hurrying, taking showers, and spiders.This summer our family visited Yellowstone National Park in Wyoming. (Did you know that persons with disabilities can get an Access Pass that allows free entrance for the family and 50% off on campgrounds?) The whole car erupts in cheers for Molly every time we enter a National Park for free. Molly loves the wildlife, hiking, and camping. Molly has completed three Junior Ranger Programs, at Glacier, Crater Lake, and Yellowstone. She has the badges to prove it.In Walla Walla we have found lasting friends through Parent to Parent, a community that shares and supports each other in the often turbulent seas of disabilities. Even without paid services, we have benefited greatly from the P2P Parent Workshops learning about PAVE, developing skills for future employment, WA Endowment Trust, and so much more.The last three summers Molly has enjoyed P2P Summer Camp (thank you Blue Mountain Community Foundation!!) and her time at Camp Meadowood Springs (Speech Camp) at Tollgate, OR (a forty-five minute drive from Walla Walla). She comes back after a week at camp with better articulation and stories than an entire year of speech therapy.P2P basketball coach Patrick McFetridge and Challenger Baseball coach Mike Spiess have shown me how investments of time can transform lives. We are so grateful for their volunteer service and kindness. Other early heroes in our world include Karen Gaffney, self-advocate and athlete with Down Syndrome, who recently received an honorary doctorate at the University of Portland, Oregon. Speaking of heroes, we are very fortunate to live close to my parents who are a huge support to our family.I am passionate about bringing awareness to the abilities of our children. Molly has taught me to look outside the box, to stretch in ways that aren’t always comfortable. She has taught me that ignorance is to be feared more than lack of intelligence. Funny, when I stopped putting Molly in a box, endless possibilities opened for both of us. Shouldn’t it really be called developing abilities, not developmental disabilities! ~~Cyndy Knight
Autism Tales: Reflecting on Holland
We recently celebrated Gustavo’s 16th birthday. He’s more than just a little taller than me— it still seems impossible but you can’t deny the pictures. When I first found out Gustavo had autism I was given the phone number to a program called Parent to Parent. I never called. Thankfully they were persistent and knew something I did not. I needed to talk. I had questions that the doctor could not answer. Some questions no one could answer. I wondered if I had done something wrong while pregnant. I spent hours thinking about what I might have eaten or drank that could have caused autism. There is a story on this blog that tells more about those early days– Autism Tales: He Gets It From Me. Parent to Parent is a program that connects parents of children with special needs with parents of newly diagnosed children with special needs. In the reading material Jennifer, my helping parent had left me I found this story on brightly colored paper. I keep a copy folded in my wallet. Here is what Emily Kingsley and Jennifer gave to me. “Welcome to Holland: I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.S o you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”~~A proud mom from Grant/Adams Counties shares about her son.
Tammy and Mike had wanted a family for a long time. After trying to get pregnant for two years without success, they sought the help of a fertility doctor and were successful the first try. In April 2010, daughter Chloe was born.“We were so excited and happy!” recalls Tammy.Four months later, another child joined their family when they obtained parental custody of Tammy’s niece, Alexis. She was only 16 months old at the time and was born with Down Syndrome.“We knew that we needed to get Alexis the help she deserved medically and developmentally. We set up services for her and began the school year with a 4-month-old and a 16-month-old, not knowing what we were doing,” Tammy said.Because of Alexis’ special needs, the school district and their local Parent 2 Parent became their new community where they learned about special needs, physical therapy, occupational therapy, speech therapy, and more.“I think that because of the relationship we had formed with these specialists, it was easier for me to accept that my suspicion of Chloe having autism might be true,” Tammy said.When Chloe was around 9 months old, Tammy noticed that she would line toys up in a particular way and did not want anyone touching them. As time went on, Tammy also realized that Chloe was not talking at the level they would expect her to be.They arranged an evaluation by the Birth to Three program to see if she was delayed in any other areas as well as speech. Chloe started receiving services privately as Alexis had been and then started the Birth to Three program.“As time went on, I began to become more and more convinced that Chloe did have Autism Spectrum Disorder. Others questioned if she did or not, but I did not back down. I knew in my gut that she did,” Tammy said.When Tammy requested an evaluation for autism through Group Health, the psychologist told her that 2-year-old Chloe was “too young” to be evaluated for autism.Due to medical issues that their other child developed shortly after this, Tammy and Mike were not able to pursue having Chloe seen elsewhere. It wasn’t until Chloe was 3 years old that they were able to request a second opinion at Seattle Children’s Autism Center.The full evaluation at Seattle Children’s Autism Center resulted in a diagnosis of Autism Spectrum Disorder.“I felt validated and relieved to know that my instinct was right and I could now make sure that my child received the appropriate therapies to better help her navigate this world.” Tammy said, adding “We knew that Applied Behavior Analysis therapy was going to be essential in helping Chloe.”Their insurance company was Group Health, which now offers coverage for ABA after a legal fight that resulted in a settlement of a class action lawsuit in 2012, just a year before Chloe was diagnosed.“I am thankful for all of the hard work and dedication from other parents and the wonderful advocacy team at WAAA. If it had not been for attorney Ele Hamburger, WAAA and parents willing to fight Group Health in court to include ABA benefits, I would have had to fight even harder to get my child the services that she needs and deserves,” Tammy said.Although Group Health offers ABA coverage, it was not easy for the family to find an ABA provider in their area.“A new Applied Behavior Analysis therapy company called Basics NW opened in our area. We sought their advice and information at their monthly support groups. Once we officially had Chloe’s diagnosis, I requested a referral from Group Health to have Chloe start ABA therapy there,” Tammy said.At that time, Basics NW did not have a contract with Group Health. Group Health declined Tammy’s request for referral and were told that Group Health already had a company that they worked with for ABA therapy.The company was farther away from their home and had a 2-3 month waiting list.“This was not going to work for me!” Tammy said.Tammy wrote an appeal stating that Basics NW was not only closer to home but could begin services with Chloe immediately whereas the other company could not begin services for 2 to 3 months.She said the last sentence of the appeal letter was the key phrase that made a difference: “Denying my child to receive services at Basics NW is delay of care.”“Delay of care, that three-word phrase, is what every insurance company does not want to hear as it puts the liability in their hands,” Tammy said.Ultimately, Group Health approved their request.“I was so happy that I could finally start getting Chloe ABA therapy close to home and a lot sooner than I would have had I not fought Group Health’s decision.” Tammy said.“It has now been more than a year and Chloe has been doing great! ABA therapy has really helped Chloe and the rest of our family. She still deals with a lot of common autism behaviors, but now we have the tools and understanding to help her every day! The best part of it all, Chloe is now able to tell us how she feels and is being able to start regulating her emotions. This is a huge difference from a year ago.”Tammy adds: “Thank you to WAAA and all who paved the path for families that have Group Health insurance like my family! Without you, I don’t know how our daughter would be able to cope without the tools she has learned in less than a year thanks to ABA therapy!”
A “Sense of Community” The Arc of SW Washington and P2P gives a “sense of community.”
“Knowing I’m not alone in parenting struggles. IEP training & help. Hope with the Home group. Pride that there is a Spanish support group. Tangible clothing items. Food for holiday to those in need. Advocacy for those who cannot speak for themselves. ARC does so much with a small overhead. I love you guys!”
~~Ann from Clark County
“Our family has benefited enormously from our involvement with Parent to Parent. I have received direct and ongoing emotional support from the initial contact which consisted of my being matched with a trained “helping parent” right at the time of my son’s diagnosis. It has saved my life, and my family’s well being, just to be able to talk to another mom who was having the same experiences and to share my son’s challenges and his accomplishments. That was six years ago, and we still have regular contact. I no longer feel helpless, or depressed, or alone. The confidence I have gained has enabled me to advocate for my son for needed services from his school and other agencies. I am a better mother to all my children. I also have been able to contribute to the program by becoming a “helping parent” myself. It feels great to use my own challenges and experiences to help another parent overcome theirs.”
~~ Susan in Yakima County
“PS: This could have been written by me – “this Susan”- when our daughter Alexa was 6 years old, as well. Parent to Parent has always been and still is a comforting support and great help in our lives. It has helped make Alexa the “woman” she is today and helped this Mom, “this Susan” so much.”
~~Susan Atkins, WA State Parent to Parent Programs
5 Ways The Providers at Children’s Village Have Enriched Our Journey
(A parent shares specific ways that the providers at Children’s Village have supported her son and her family.)
~~E. Christie Afualo
My husband and I have three wonderful children. Mason, our 12 year-old, has Down syndrome. He received early intervention services from Children’s Village, and he and our family continue to be involved in different events and activities at the Village. In addition to having developmental delays, Mason was born with a gastrointestinal malformation that required four surgeries. We have interacted with many providers, both medical and developmental, and have felt fortunate that most of those interactions have been great. These are some specific ways that the providers at Children’s Village have supported Mason and our family:
Providers who “know their stuff” and share their expertise are invaluable. It’s true that I’m an expert on my son, but sometimes I just want to be a mom, not a therapist or teacher. I’m grateful to have professionals like therapists and teachers at Children’s Village who work with Mason so I can enjoy being his mom.
I appreciate providers who show interest in Mason and are excited to work with him, not just as a project or a job, but are truly happy to engage with the cute little boy with funny habits or the older boy with not so cute habits. These dedicated providers at Children’s Village demonstrate that they are invested in Mason’s success.
I appreciate providers who are genuine and show integrity. They treat our family with respect and kindness at all times, whether or not we’re directly working with them. They don’t speak poorly of us when we’re not present.
Sometimes I don’t know exactly what questions to ask. The providers at Children’s Village are prepared and are able to anticipate some of our family’s needs and then offer appropriate guidance that makes our journey easier.
Our family has benefited from providers at Children’s Village who share their wealth of knowledge. If they don’t know the answers to our questions, they can find someone who does. They are adept at connecting us with other families and providers, services, events and helpful information. Our interactions with providers at Children’s Village have been particularly positive. We cherish those relationships and would like to extend our heartfelt thanks to all the special providers who have made a difference in our lives.
“It was a pleasure to come to The Arc of Spokane, Parent 2 Parent program, for a consultation on people available to help our adult niece and nephew who live in the Spokane area. Roz Bethmann advised us on issues having to do with Social Security income and employment. Roz introduced us to Helen Black (one of the Parent Peer Matches) who works as advocate for individuals who are making their way in the world of employment. Roz gave us a referral to an agency that, in addition to the impact of marriage on benefits, could also advise our family on the details of income from employment with respect to SS income. Our niece, her husband and our nephew made appointments to address their specific SS issues and to work with Helen in finding resources for the areas of employment in which they are interested. By having the information and referrals to pass along, we were able to assist our niece and nephew meet their own goals. It is wonderful to know that The Arc of Spokane, P2P program, is there to answer our questions as our niece and nephew continue to gain independence and make good decisions. We are most grateful!”
~~Aunt from Spokane, WA
“Parent to parent has helped me so much emotionally!
I met Angela at a play group and she has offered all kinds of support and resources when I asked for help. Her experience in special needs and medical issues with her own son has also helped me cope with our journey in those areas. Having her to turn to during our battle with Cliff was vital since we started going to Seattle children’s hospital and she had lots of knowledge about locations and policies . I call Angela my friend now and am very thankful someone like her was available to me for support.”
~~A parent from Lewis County
Special Kids: Surviving and Thriving While Raising a Child With Special Needs
An article in Parent Map magazine written by Patricia Guthrie on September 26, 2013. Young siblings of children who need a myriad of medical, social and therapy support often feel jealous and resentful about being the “not so special child.” And teens with special-needs siblings may feel they’re being called upon to be mature beyond their years, says Rachel Simon, a best-selling author who grew up in a family of four, which includes Beth, who has developmental disabilities. Simon’s 1999 book, Riding the Bus with My Sister, details the year she spent discovering the many friendships her sister formed while riding city buses in a Pennsylvania city. She said her sense of responsibility for Beth intensified in her 20s when her friends were free to “goof off.” She remembers thinking, “How can they be so carefree and foolish?” Experts say children growing up with a sibling with special needs often reflect the way their parents cope. If the parent is handling things well, the kids will, also. But, Simon says, people often forget that adults have the advantage of perspective. Young brothers and sisters, on the other hand, have not experienced a “before” and “after.” They only know the “now.” And that now can seem unfair, uncompromising and downright difficult.
More help today
These days, families such as the one I grew up in can draw on more support and resources, especially in Washington state. In fact, this region has been a leader in creating innovative programs replicated across the country and globe. Three of these — Parent to Parent, Sibshops and Washington State Fathers Network — have helped tens thousands of families for more than three decades.
Click here to read the entire article online.
Parenting Children With Special Needs~~A story written by Stacey Schultz, nationally published freelance writer in Seattle. Stacy writes about parenting, health, education and the environment.
December 30, 2011 Not long after Rachel Trindle’s twin son Daniel was born with cerebral palsy, she noticed the friendships she’d cultivated with other parents just “withered up and died away.” After all, her life as a mom had changed dramatically. No longer could she connect with parents of typical children as she did when raising her two older sons. Even more disconcerting, those same parents – the ones she’d spent so much time with – clearly didn’t comprehend the challenges she was now facing. “I’m dealing with major surgeries and the acquisition of a wheelchair,” says Trindle, a Bellevue resident. “I’m trying to listen to them talk about Disney vacations and I just cannot relate on any level.” Trindle’s sense of disconnection is not uncommon for parents who have been suddenly thrown into a world of grief, medical jargon and awkward exchanges with family, friends and strangers, say Gina Gallagher and Patricia Konjoian, authors of the book Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children.” Because we’ve struggled so much trying to find a place for our kids in this perfection-obsessed society, we become frustrated when other parents don’t share the same struggles,” they write. ” And often [we] resent the fact that they don’t understand ours.” Parents of children with special needs find it’s easier to spend time with other parents who have had similar experiences, a bond the writers wryly call the “imperfect connection.” Schools especially can be hotbeds for tension between parents. Yet, says Trindle, as the dust has settled in her life as the parent of a child with special needs – Daniel is now in the fifth grade – she’s started to see the common ground that all parents share. “I deal with pretty much all the same things that a typical mom does,” she says, “and then there are some things that are unusual.”
Dealing with grief, loss
The term “special needs” refers to a range of developmental disabilities that can impact a person’s ability to move, communicate, lean, care for himself and live independently. According to the U.S. Centers for Disease Control and Prevention, these include attention deficit hyperactivity disorder, cerebral palsy, autism, seizures, stuttering or stammering, hearing loss, blindness, learning disorders and other developmental delays. A study publised last May in the journal Pediatrics found that 15 percent of children ages 3 to 17 years, or nearly 10 million children between 2006 and 2008, had a developmental disability, and that boys were twice as likely as girls to be affected. Many parents experience a profound sense of grief and loss when they realize their child is different from typically developing children. Seattle mom Brenda Biernat is a photographer. Her 9-month-old son, Jasper, had a stroke at birth that caused mild damage to the visual portion of his brain. “I’m a really visual person and I literally had fantasized about visual things like showing him mountains or animals,” she says. “You grieve the loss of the dream you had and what you imagined it would be like.”
Her pain was especially potent when she was around other babies. At a mommy/baby meet-up shortly after Jasper’s birth, Biernat watched the babies sitting on the floor, all looking around. “It was just so hard to see that,” she says. “I ended up leaving early.” On the way home, she pulled over to the side of the road and cried. “I went through the whole ‘Why did it have to happen to him?'” she says.
The process of accepting a child’s disability can take years, says Susan Atkins, the Washington state coordinator for Parent to Parent, and organization that connects parents of kids with special needs to each other as well as to resources and information.
Atkins’ daughter Alexa, now 28, was born with Down syndrome. “It took me a while to be comfortable with Alexa having Down syndrome and not being typical,” she says. “I didn’t tell everybody for the first three or four years of her life that she had it.”
When Alexa was born, Atkins left the hospital with little information or support. A month later, a mother of a 3-year-old boy with Down syndrome called and offered to drive her to a support group for parents.
“She helped me so much,” says Atkins. “Parents with special-needs children are often the best resource for each other to get information and support.”
Biernat found a support group through Boyer Children’s Clinic, a Seattle-based facility that offers therapy and early childhood education to children from birth to 3 years of age. “This group has been my salvation,” she says. “It’s a really different experience from the typical mom.” The moms in her group share the grind of endless doctor’s visits and medication regimens. “Those are your daily routines, versus the moms who are just raising their kids and doing the standard things.” she says.
Trying to connect
Parenting a child with special needs can feel isolating. Ours is a world where young children ask awkward questions and strangers might peer disapprovingly at unusual behavior. Before Daniel was born, says Trindle, connecting with other moms was easy. “You have a parallel life and a lot to talk about,” she says. When a special-needs child enters the picture, things change.
“Suddenly, you’re uncomfortable to be around.” Trindle feels especially alone in public settings, since her son’s disability is so apparent. Daniel uses a wheelchair and a feeding tube, and has a voice output computer to help him communicate. Because people don’t know how to respond to Trindle and her family, they often ignore them, she says. “That’s one of the most uncomfortable things: to know that you are extremely visible, but to be treated as if you are invisible.”
While being ignored is unpleasant, being judged can be intolerable. Disabilities such as autism, not always obvious to onlookers, can provoke responses ranging from curiosity to downright disapproval. When autistic children, stressed by their environment, become frustrated or anxious, other parents mistake the meltdowns for misbehavior, says Kelly Johnson, a clinical psychologist at the University of Washington Autism Center. Many conclude that child needs more discipline. “There’s a lot of blaming of the parenting,” Johnson says.
Toby Beth Jarman’s 7-year-old son, Zachary, was diagnosed last year with Asperger syndrome, a mild form of autism. In preschool, Zachary had a tricky time with transitions and taking turns. Sometimes he’d punch other kids. “Parents who didn’t know me thought he was a bad boy,” she says. “There was talk that I should be spanking him. Everyone had an opinion.”
In many cases, kids with special needs share classrooms with typical children – upping the pressure for parents of the special-needs kids. Parents of typical kids are sometimes wary of having a student with special needs in their child’s classroom, says Stacy Gillett, education ombudsman for the Governor’s Office. they fret that critical time or resources will be diverted from their own child’s education. “They won’t say anything directly to the parent,” says Gillett. Instead, “They will go to the principal and ask, ‘Did you make the right decision having this child in our class?’ or ‘Are you spending too much energy on this child with disabilities?'”
Fears and prejudices
Underlying those concerns are even deeper fears and prejudices, Gillett says. These range from the irrational worry that a disability might be contagious to discomfort with not knowing how to interact with someone who looks and lives differently. “These are very visceral responses from parents that are aimed at protecting their own children,” she says.
That tension is not lost on parents of kids with special needs. Jarman likens being the parent of a special-needs student to the person with the crying baby on the airplane. “Maybe people are being polite to your face, but you know nobody’s really that happy to see you,” she says. “And you’re going to do everything you can, you’re going to exhaust yourself trying to keep your baby from crying, but the fact is that baby is probably going to cry at some point and it’s probably going to annoy people, and they’re going to resent your presence.”
Jarman finds that people are not always forgiving or understanding, even if they know about a child’s disability. “Last year, my son wanted to have a playdate with this kid with whom he’d gotten into some fights earlier in the year, so I invited him to a playdate,” Jarman says.
The father expressed reservations; she explained that her son’s Asperger syndrome means he doesn’t always get social dynamics right. “It was a really awkward conversation. I could tell he really wanted to be big enough to get past his discomfort and let this happen, but in the end he wasn’t comfortable with it, and then I wasn’t comfortable with it.”
Jarman would like to feel welcome and accepted by the parents in her child’s class, but is reluctant to reach out to them. “Just the few negative interactions we’ve had with other parents have made me gun-shy,” she says. “But when people are outgoing and indicate that they are accepting, that goes a long, long way.”
Rachel Trindle agrees. “The kind of response that I love is when people make eye contact, smile and say, ‘Hi,'” she says. She understands that people may be worried that they will offend her by saying the wrong thing. “It’s never irretrievable,” she says. Some times, after awkward conversations, people tell her, “I feel really bad about the way I came across,” says Trindle. “We can go on from there and have a really good exchange.”
Trindle has learned to have a thick skin. Years ago, a parent from her other twin’s preschool, emailing about kindergarten, wrote, “You definately want to avoid this class because I heard it’s going to have a totally retarded kid in it.” Trindle was shocked and hurt. Eventually she realized that the comment reflected the parent’s fear about her child’s ability succeed in a classroom with limited resources. “I can recognize that that fear is not about rejecting my child,” she says. “It allowed me to continue to interact with her.”
Helping others understand
How can parents achieve better understanding and communication with parents of children with special needs – and with the kids themselves? How can they help their own children do the same?
Susan Atkins’ solution was to get involved with her daughter’s school. Each year, she introduced Alexa’s classmates to an “All About Me” book Atkins created. The book included pictures of Alexa as a baby and activities Alexa liked to do. Atkins also talked to her daughter’s classmates about Alexa’s Down syndrome.
At the end of the talk, she’d ask if anyone would like to be in Alexa’s “Circle of Friends.” that meant the kids would eat lunch with Alexa and a teacher once a week and share pizza once a month. “They had an opportunity to get to know Alexa on a different level than just being in the classroom,” Atkins says. “It was always amazing how many kids raised their hand.”
Atkins says the Circle of Friends led to birthday party and playdate invitations for Alexa. “I got to know some of their parents well and still know them,” she says.
Parents of typical kids can also reach out to make social connections. The UW’s Kelly Johnson suggests that parents offer to have a playdate at either child’s house. Parents should try to find out what the child with special needs is interested in and whether there are certain times of day that seem to work best, she says. Initially, try to plan an activity that both kids with enjoy, “something that is really a special treat so that the activity itself is really enjoyable to both – and they happen to be together,” says Johnson. And when parents are socializing with each other, Johnson advises parents of typical children avoid discussing the special-needs child’s diagnosis. Instead, talk about the things any parent might chat about, she says.
Trindle says she appreciates those typical kinds of interactions. “I admire the moms who are able to get past the obviousness of the wheelchair and just ask how Daniel’s year is going,” she says.
Julie George, an education consultant at the UW Autism Center, is hopeful that the next generation will be more comfortable with people who have disabilities. With education and information, kids are usually quick to accept each other’s differences, she notes. “Kids can be really understanding. They just want to know what to do and how they can help.”
When Daniel was in the first grade, one of his classmates felt bad that Daniel couldn’t eat candy on Valentine’s Day (he uses a feeding tube). So the classmate and his mother come up with an idea.
They created a bandana for Daniel that had the signatures of each student in the class. Since Daniel wears a bandana, this gesture embodied the level of thoughtfulness that Trindle cherishes. “That one kid who thought about Daniel as an individual,” she says, “if he ran for president of the United States, I’d vote for him.”
Article: “Whitman Student Starts First ‘Best Buddies’ Chapter in Washington State” Read how P2P Coordinator Carla Nibler (Walla Walla) helped Whitman student Michaela Lambert with her “Best Buddies” project. Biology major Michaela Lambert ’14 used to hate Mondays. For the first two years of high school, Lambert, from Napa, Calif., dreaded Monday mornings as much as any other student. But during her junior year, she came across the notebook. It was a notebook full of remarkable cartoon sketches, said Lambert and it led her forge new ground at Whitman.
Click here to read the complete article.
“One positive program that has offered me a sense of connection is Parent to Parent (PAVE).”
November 2, 2011-Sir/Madam,
Eight years ago I gave birth to my first child. His name was John and he lived for 5 days. It is needless to say that this time in my life was marked with a number of emotions. There was grief, joy, love, sadness, stress, and hopelessness- to name just a few. The death of my child has never become easier to bear, but it has changed in nature. Since that time, I had another boy named Davy who is a healthy (and very energetic) six-year-old. Jeffrey was my next child. He would have been four this year but died at birth on my 33rd birthday. My last son is Randy, who we call Junior.
He is three and diagnosed with Prader-Willi Syndrome. This is a genetic disorder with delays in cognitive, physical, and behavioral benchmarks. The focal point of this diagnosis though is an inability to control food intake. He will always be hungry. He will never be able to manage this without help. All of this, plus the general living of life, have filled the last eight years of my life with tremendous elation and tragedy.
Thank you for your support!
~~Jessica Takehara (Gig Harbor, WA)
Yakima County recognized by Champions for Inclusive Communities as a Star Community Located in central Washington, Yakima County’s children are more likely than the average child to live in poverty, have a mother without a high school diploma, and speak a language other than English. Supported by Children’s Village and its partnerships, children with special health care needs in Yakima have been thriving for over a decade. Diane Patterson, director of the Children’s Village says, “The key is creating a vision that inspires your community to commit their time, resources, and energy.
(Link to Full Story-pdf)
“If we lose…Parent to Parent, where do we go to get the support?”
I’m not able to go but would like to say that thanks to Parent to Parent. Miles received a tricycle donated to him by Windemere Properties. Kathy Evans excepted it and handed over the trike to Miles that has helped him get the exercise that he needs for his legs. Miles really enjoys his trike and I believe it has allowed him to feel more a part of the family when he can enjoy something of his own and we get to see the smile and hear his laughter as we take him for his walks everyday (weather permitting). Miles has since lost the ability to walk because the surgery that was to help him walk did not go well and this trike has given him the ability to get out and use the legs that no longer let him walk or stand on his own.
The other thing is the camp for the kids and families where we can go and know that someone is not looking at him or any of the other kids as being different. Being able to share our thoughts, feelings and frustrations as a family rather than just one parent is an important thing not only for the kids with disabilities but their families as a whole. Have fun at the same time as a group.
Moms’ group, dance and the once a month get togethers that was nice to be a part of that and be able to take a big breathe and feel like a part of something instead of a misfit because of our child with disabilities.
Parent to Parent is needed for us that feel loss, stressed and information that is needed to figure out what next step we as parents need to make to insure our children’s life. Without them we would be floundering because there isn’t a program here in Thurston County that I found that has the compassion and the want to help families in need. If we lose them Parent to Parent where do we go to get the support and directions to make life a little easier for the children and us as parents with our disabled children? Thank You Parent to Parent for the support and information that I have asked for and help with getting medical needed equipment for my son. You have a blessing for us.
“We are now in a huge family.” ~~To Whom It May Concern:
My name is Charlotte Quevedo, and I am the mother of a 2 1/2 year old, Paulino Israel Quevedo, who was diagnosed with autism on January 27, 2009. Neither my family nor my husband’s knew anything about autism spectrum disorders and so it has been up to me to get all the information I could find to help my son. My son’s grandparents live far apart, and so we have been living on our own in Sultan, Washington, without sufficient socialization and feeling of belonging to the community.
When my son got the diagnosis, I suffered extreme depression because I was isolated, feeling intellectually incapable of understanding my new responsibilities, and lacking close friends and family support. Shortly after my son’s diagnosis, I went through the paperwork his doctor gave me, and found some important information that helped change my life.
I made a phone call to the Arc of Snohomish County, met Jessica Atkins, and then was connected to another wonderful woman, Cynthia Weissinger. From there I was invited to birthday parties and have been notified of all the support group functions and events. This has been extremely priceless for me, as my family has been struggling financially, and we can’t afford counseling services for ourselves to cope with the depression (so therefore, friendship has been a powerful source of healing). While we have lost assets in the past few months, we have gained something so much more in terms of quality of life. We feel like we have friends we can turn to, and that is priceless. I have people I can talk to when I feel upset, people who won’t tell me that my problems aren’t real.
Having other parents to socialize with and help us find out what all of our financial options are has strengthened our marriage as well. Instead of two isolated adults with a special needs child, we are now in a huge family with other people who seem to have experienced everything we are going through. Nevertheless, I still have many worries in regards to how I can help my son. I am not capable of working full time, and so my husband is struggling to help us pay for my son’s diet and health care costs. Having people around to support us has led us to find opportunities to broaden our options for treatment.
Needless to say, families with special needs children need a network for socialization and information on treatment and financial assistance. Without that network, it will be especially difficult for families who live in smaller cities, like Sultan. Our children deserve just as much opportunity to exceed and live a happy life as children who are born to more fortunate situations.
Charlotte Quevedo, Sultan, WA
“P2P has been a huge help for my family. We have 3 children with developmental delays. Some days I am overwhelmed by the number of things I have to accomplish to help them develop.
P2P provides a place where other moms understand. We laugh about things that other moms would be shocked at. We laugh because if we don’t we’ll cry. That support and understanding is such a relief.
Even more important is the support provide through the Sibshop events for my typically developing child. She watches her siblings go to multiple appointments. They are “special” and get lot of Mom’s attention. She’s old enough to understand why they get so much attention, but it’s only natural to have some resentment. Sometimes her siblings odd behavior becomes almost overwhelmingly frustrating for her. Sometimes, it’s just plain embarrassing. Sibshop provides a safe place for her to talk about her feelings about her siblings. It also gives her a “special” event to attend and reminds her that she is special too.”
Dawnette M. Chadwick, Coordinator
Medical Reserve Corps
Whatcom County, WA
To Whom It May Concern: Parent to Parent programs MUST stay available to us! I am the mother of 4 Sons. My son Joshua who is 6 years old has Autism. I have just found a Mom’s group where I can get the wisdom, knowledge, and the support that I so desperately have been trying to find! For a couple of years now, I have been so frustrated trying to figure out everything on my own on how to help my son function in this world; parent to parent groups are so vital in bringing families out of isolation and into the community! I’m afraid that if they cut these groups along with school aid and programs our kids won’t have a fighting chance! Please help us to help our children… the future…. the next generation.
To Whom It May Concern: This letter is in support of the Parent to Parent Program. Here is a little bit of background on my family. I am a young mother of 2 boys, 2 year old Noah and 6 week old baby Elliot. Earlier this year Noah was diagnosed with autism. Devastating and extremely hard to deal with while adding a new baby to our family. I was at risk to get Post Partum depression but the support I found from mothers I connected
with through the Parent to Parent program has helped me tremendously.
This program offers many events and activities appropriate for kids with disabilities and their families, this is a safe environment where my son is learning how to socialize, which is a major challenge for autistic children like him. I haven’t found this anywhere else in the community. Please consider the Parent to Parent program for funding. There are too many families across the state benefiting from it and we are one of them. Thank You.
Fabiola Tercero, a parent in Lynwood, WA
“You have a place where you can feel at home and understood.”
When Tracie Hoppis approached me this year and asked me to write an article about my daughter Emma and what Valley Parents and Children’s Village has meant to us, I was delighted! Hi! My name is Sue and I am a single mom to Emma and Lane. Emma is 8 years old and was diagnosed in 2006 with Autism. We have always known that Emma was developmentally delayed but having a firm diagnosis has really helped us access services.
When Emma was 4, I joined Valley Parents. Valley Parents is a group of moms and dads who have kids with special needs- they get together to talk, laugh, learn and sometimes cry. When I first attended, I wasn’t sure what to expect and even asked my mother to attend with me. I soon found out that I wasn’t alone and that there were other families who shared my same journey through life. We all think that we have it the roughest until we hear someone’s story of day to day challenges, then stand back and say to yourself…. “maybe I don’t have it so bad”. Don’t get me wrong, we have good days and bad days, but we learn something from EVERY ONE of them!
Valley Parents has been a blessing to us. I encourage EACH of you who have not tried one of the Parent to Parent groups to just come and see what they’re like. You don’t have to talk if you don’t want to BUT you can listen and be amazed at how many of the same challenges other families have that are just like yours. I guarantee you will enjoy it and come away with NEW information from parents who have “been there”. We all have challenges with the systems: SSI, Medical Coupons, General Insurance, and School. I am speaking from experience when I say that there are people in EACH of these groups that have some great insight to share on these topics and others. I’ve learned at Valley Parents that no matter how big or small your challenge is with your child, rest assured from someone who has been there, you have a place where you can feel at home and understood.
In addition to Valley Parents, we’ve been involved in another program through Parent to Parent called one 2 one. It warms my heart to attend one 2 one’s Slug Bug group every Saturday. We just finished playing three months of basketball and Emma has come along way. The first time we went to Slug Bugs when Emma was 6 years old she didn’t want to participate. But you know what, that was okay. If she wanted to run laps during basketball or run the field during baseball and participate here and there, it was all acceptable. We feel welcomed with open arms in all of these activities.
Today, Emma has become more participative in all of the activities. It gives her (and mom) a chance to exercise and spend some very important one on one time together. Parent to Parent’s one 2 one program also has a great group of teenage mentors who get out there and work with the children.
~~Sue Fate, Yakima, WA
“I have never felt alone again thanks to (P2P).”
Hello and thank you for listening to my story: My son was diagnosed with Autism Spectrum Disorder with Global Developmental Delays in November of 2007, at almost 4 years old. Even though Autism is one of the largest developmental disabilities to date, I felt all alone. I struggled with his diagnosis and the constant feelings of failure. I didn’t know how to handle him or how to deal with Autism. I had no idea what was to come of anything. I was angry that my son was not “normal”, I felt guilty that I was angry. I felt guilty, sure that I had done something wrong to cause his problems. I FELT LOST!
I found the Arc of Snohomish County and it took me a few months to get the courage to go to my first Mother’s Network meeting, for fear of more failure. Here I was sure were women who “got it” and understood and knew what they were doing, while I knew nothing. I remember the first few meetings, I would sit and listen and try not to cry (I cried a lot). I was sure they would tell me everything I was doing wrong, or I wasn’t doing enough. THAT NEVER HAPPENED!! I found a group of women who CARE!! I found a group of women who did understand and told me often that I was a great mom and my son was beautiful!! I found a place that I could be brutally honest about anything, and I am never judged. I am supported, I am loved! I know that I can call these women in the middle of the night and cry if I need to. I know that I can be angry about Autism and how hard it is for my son to go through, what most take for granted, a trip to the grocery store. They are there to cheer when he learns a new task…at 5 he became potty trained!!
This past month, we were able to go out to lunch with friends, and he was able to sit at the table for an hour and not have a meltdown for the first time EVER!! Things most people take for granted are celebrated with these women, and I could never repay what I have gained from them!! It has meant the world to me to be able to get support from the Parent to Parent groups through the Arc. I have never felt alone again thanks to them.
To Whom it May Concern: I cannot say enough about the Parent to Parent organization. When my son was unexpectedly born with multiple congenital anomalies and later diagnosed with Cerebral Palsy and Epilepsy I was stuck in an emotional black hole. I had not even begun to comprehend the magnitude of what lay ahead when a home health nurse asked if I had been “hooked up” with Parent to Parent yet. I questioned her because I had never heard of the organization before and had no idea what it could offer me. I was in for a wonderful surprise when I made the call. Since my son was under 3 years of age my family was assigned a Family Resource Coordinator. This is what I later learned to be an extremely valuable position. A person only knows what they have experienced or read about and cannot truly understand what lay ahead if no one is there to guide them along. I had no idea that a Birth to Three program existed for developmentally challenged children. My FRC informed me that it would be an early start to school for my son since he would need extra time and services to level the playing field for him. Not only did P2P get us involved in the school system, they provided a multitude of community resources for things ranging from individual funding, healthcare services, educational materials/classes, and so much more. Still this does not describe the full spectrum of Parent to Parent’s services. Several community events that are more accessible and more accepting of disabled individuals are put on by P2P each year. These events help children realize that there are others like them and that they can grow up to be functioning adults. The toy and equipment loan program is another valuable asset that P2P has. Families that have items which are no longer being used donate their things to P2P. This is a spectacular place to go to find enticing toys for the sensory challenged child as well as positional equipment that is very expensive and all too often not covered by health insurance. As my son has grown and is now out of the Birth to Three program our needs have changed. Parent to Parent has been there to meet these new needs and is still a very important part of our lives. Presently I attend a monthly Mom to Mom meeting, through P2P, where moms of disabled children meet and discuss our trials and triumphs. This group means a lot to me; the women are all so understanding and they listen without judgment. I hope that you take my words to heart today and see the need to keep funding a fabulous program.
Dear Legislators, I am a single parent of two daughters, one of them is a child with special needs. I have found the ARC of Snohomish Co. to be a tremendous resource for me to help my daughter. The programs that they put on, the parents who offer insight and advice and the resources of that office will be decimated if they aren’t able to keep the funding that helps to keep this program all together. My experience was that I needed some specific advice on how to transition my daughter from high school into adulthood. This is complicated enough with trying to understand the paperwork involved with a guardianship and starting the paperwork with some of the agencies who will help her as an adult. The Parent to Parent program was very instrumental in helping me to learn how to start this process, what to do first, what things were of a lesser priority, etc. I will continue to use this program because it is a terrific resource for me and my family. Please keep the funding intact. I now these are difficult times, but the services that this program offers are too important to lose. Thank you for your time and support, Susan Paine
I remember when my son was first diagnosed with Chromosome Ring 18 at two months of age. I (and my husband) was terrified! The only words that kept running through my mind were that of all the degrees of the unknown: mental retardation, heart anomalies, kidney failure, blindness, deafness, low muscle tone, microcephaly, and the worst: failure to thrive. I felt as though I was alone on a deserted island. Not one friend or relative could even come close to imaging the fear of the unknown that I felt. No words could comfort me. I was so terrified that my little beautiful baby would never know love.
I remember picking up a P2P pamphlet one early evening that my FRC had given me. It seemed like the only promising thing I had read in the weeks of reading Doctor’s notes and talking to people who really didn’t know of my son’s rare anomaly. I had cried so hard for two weeks straight that I felt like a zombie when Michelle answered the phone. And then again, I felt those tears rushing back. I explained to her my situation, and she replied back to all my comments and her story with three undercurrents in her voice: strength, humility and courage. I knew then that there was SOMEONE out there who could relate, and suddenly I realized that I was now in a whole new “club” of life, and that I could actually become like her with that same strength. I could get through this, and raise my son just fine!
To fast forward…my son is almost three now and is a tremendous gift to our family! He has enriched our souls more than I could ever explain. I have still had my fears, and I am grateful that there are other families out there going through raising children with varying degrees of special needs. I have learned something from them all. I probably would not have met most of these people if it were not for our local Parent 2 Parent meetings. I communicate with some of these families outside our varying activities, and am meeting new ones all the time. Without these people, I may have fallen into a pit of helplessness. Now, whenever I feel a “wave” of worry about what my son will face to come, and things seem a little overwhelming, I reach for the phone and talk to one of them, and it always helps to bring me back to a “can do” attitude. Kipp (my son) has overcome so many obstacles that were the “unknowns.” Like any child, but maybe a little more so, we will always have to assist him with his own individual needs that will help him flourish and grow. I believe that with faith, family, friends, and Parent to Parent in our lives, I have become a stronger parent. They have helped get me through all the rough patches of raising a child with special needs. I can now focus on watching my beautiful boy reveal the miracles of daily life he was always intended to show, to those with the courage to truly see.
Amy Kocher – Kittitas County Parent to Parent
“Having P2P’s support helped us to realize other parents have the same difficulties.” March 31, 2009-Dear Legislators, We are unable to attend Family Advocacy Day but would like to let you know how the Parent to Parent Program is important to us. First a little background information about our family. We are a family of three – Arv, Charla and a 17 year old son, Ole. Our son has multiple developmental and mental disabilities – high functioning autism, ADHD, Oppositional Defiant Disorder, sensory processing problems, Bipolar and is also legally blind in one eye. Raising him has been challenging but also enlightening because of the way he processes information. Luckily I was able to be a stay at home mom and Arv is now retired. Parent to Parent has been a life saver the last several years. The Mother’s Network meetings have helped me connect with other Mom’s going through the same difficulties I have and also to know that I am not alone. The same goes for the Father’s Network for Arv. Speakers at other meetings have helped us stay informed and learn new ways of working with Ole. Lego Club sponsored by the Snohomish Parent to Parent has been great for Ole. It helps him connect with other kids and for us to connect with other parents. There are so many ways that Parent to Parent helps us stay connected and feel we belong somewhere. It is hard for people to realize how isolated parents and families feel when they have a child with disabilities. It is extremely hard when you are talking with other parents that have not gone through what we are going through and they tell you your child is “spoiled” or being a brat – they have not had to deal with issues we deal with. Even the doctor’s have no answers on how to deal with him. In fact the doctor’s were going to institutionalize him because they didn’t know how to deal with him. Fortunately we did not give up and now have his anger somewhat controlled by putting him on a Gluten Free/Casein Free diet. Having Parent to Parent’s support has helped us to realize that, yes, Ole is unique but also that other parents have gone through some of the same difficulties as we have.
We understand the difficulties you are having with balancing the budget but Parent to Parent Programs are extremely important to families with children that have disabilities. Please continue to fund the Parent to Parent Programs.
Charla and Arv Aurdal, Snohomish, WA