Becoming advocates for kids with special needs was not part of our parenting job description when we were expecting our first child. It probably wasn’t part of yours, and it wasn’t part of John and Michelle Bartlett’s either. But after their son Jake was born, Michelle morphed into an extraordinary advocate for their son. Over the next few days, Michelle shares her journey with DifferentDream.com readers. Today, in Part 1 she describes how she became her son’s advocate.
Michelle’s Special Needs Advocacy Journey
Jacob was first diagnosed with 4p- syndrome when he was 7 months of age. We were told he would not live to 2 years of age and this year he will be 12 years old. We have had a few close calls over the years, but we are truly blessed to have him here still with us. He is also diagnosed with epilepsy, CP, PDD-NOS, osteopenia, and Mitochondrial Disorder. Jake has been in and out of the hospitals for various surgeries for club feet, ear tubes, hypospadia, but has been in the hospital the most for uncontrollable seizures. The tonic clonics are from fever related illnesses, and one time due to a surgery.
We have spent a lot of time battling with the school districts to get Jake an appropriate education, and I have appealed many times with insurance companies to get things covered for him. I could easily write a book on schools, and one on insurance companies. I would also have to add a book about dealing with doctors as well. At times it is hard to get people to see past the diagnosis to the child. I tell families that the diagnosis is just words to describe a medical condition; it does not define who my child is. In fact how would we define a super cute, snuggley, awesome little boy? He is impossible to define. He is Super Cool Man!
I guess you could say our special needs journey has been pretty awesome. I have learned more than I ever thought possible. I always tell people parenting a typically developing child it has it sharp peaks when things happens, but you pretty much stay in the middle as far as what life gives you. With a child like Jake it is a constant up and down journey, but a journey I would do over again a million times over. We have lots of ups and downs and don’t spend a lot of time in the middle. It is an intense roller coaster ride, but a blessed coaster.
How Parenting Jake Changed Michelle and John
I am a much better person, and Jake challenges me daily. Our first priority in life is taking care of our son, and providing him the best care possible. When he was younger we spoiled Jake a lot since we were told he would not be with us a long time. I think subconsciously we did this without realizing we were spoiling him. He is now an 11-year-old boy that even though he is non verbal he lets us know when he is unhappy. He yells at us when he is angry. So in the last year we had to start treating him more like a typically developing 11 year old and putting him in his room when he is being naughty. It felt weird at first putting him in a time out, and it was actually refreshing because we saw how much alike Jake was to other kids. He may be developmentally delayed but behaviorally he is right on track.
There are certain things that I focus on more than other things. An example would be that I am always working on his walking, and using his legs, and do not work as hard on his academic skills. I think every family is different, so how a child functions not only depends on the level of disability but early intervention, schools, and what do the parents focus on. I hope this makes sense. The other thing I learned was that Jake will do things when he wants to, and not when I want him to do it. It can be hard to back off on teaching a skill when you really want them to do it, but sometimes it is necessary. I have learned to have more patience, and let Jake develop at his own pace.
How Parenting Jake Turned Michelle into a Special Needs Advocate
The things I have learned from Jake have carried over into every aspect of my life. My passion in life is now helping other families that have children with disabilities. I also learned to be an incredible advocate when it comes to the medical community and was able to provide information to my father in his last years of life. People have asked my advice on many other issues and having Jake has helped me prepare for so many things. My best advice for families is to slow down and climb into your child’s world instead of making them fit into our world. Once I let go of developmental milestones things became so much better, and we have so much fun. Jacob has taught me to slow down and rejoice in the little things.
What’s Your Advocacy Story?
If you’re the parent of a child with special needs, you’ve learned to be an advocate, too. So share your advocacy story in the comment box and come back tomorrow to learn about Caregiver’s Ladder, the parent support group Michelle formed. See you then!
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It’s a whole new world, isn’t it Yvonne? How wonderful that you have found friends able to show you how to be a better advocate. I hope you come to this website often for ideas, too. We’d love to hear more about your journey and Cheyenne’s.
Jolene
It’s a whole new world, isn’t it Yvonne? How wonderful that you have found friends able to show you how to be a better advocate. I hope you come to this website often for ideas, too. We’d love to hear more about your journey and Cheyenne’s.
Jolene
I have yet to read the blog, but I just wanted to say, what a beautiful shot! Beautiful family!
I have yet to read the blog, but I just wanted to say, what a beautiful shot! Beautiful family!
Im the mom of Cheyenne.I had her 2 wks before I turned 40 in IL and 1 1/2 yrs later moved back to tx.Im still in the what I call the milk and honey stage of learning how to advocate for my daughter.Just this past yr Ive meet alot of new friends that Im learning from on how to better advocate for my daughter.
Im the mom of Cheyenne.I had her 2 wks before I turned 40 in IL and 1 1/2 yrs later moved back to tx.Im still in the what I call the milk and honey stage of learning how to advocate for my daughter.Just this past yr Ive meet alot of new friends that Im learning from on how to better advocate for my daughter.
Way to go, Rachel!
Way to go, Rachel!
Karen,
Thanks for sharing your story. Readers, a stop by http://www.faithinclusionnetwork.org is worth your time. What Karen is doing through that organization is marvelous!
Jolene
Karen,
Thanks for sharing your story. Readers, a stop by http://www.faithinclusionnetwork.org is worth your time. What Karen is doing through that organization is marvelous!
Jolene
For me, advocating for my daughter who has autism naturally evolved into advocating for others with disabilities and their families. As a person of Christian faith, I was concerned that so many of the other parents I met had difficulty as we did, finding a faith community that would accommodate our daughter and our family. Through advocacy work at church, by starting a faith based support group for parents called Living in Holland and then by founding an organization called Faith Inclusion Network, http://www.faithinclusionnetwork.org , I have been blessed beyond measure. The world of faith and disability advocacy has enabled me to create and enjoy community not only with people throughout our area in VA, but also helped me connect with a national community of like minded advocates, people throughout the country working to make faith communities more accessible and welcoming for all. Although I recognize that not every parent can or should advocate beyond the needs of their own child, I wouldn’t trade my experiences for anything. I feel so blessed to be mom to Samantha and an advocate for people with disabilities and their families in our community.
For me, advocating for my daughter who has autism naturally evolved into advocating for others with disabilities and their families. As a person of Christian faith, I was concerned that so many of the other parents I met had difficulty as we did, finding a faith community that would accommodate our daughter and our family. Through advocacy work at church, by starting a faith based support group for parents called Living in Holland and then by founding an organization called Faith Inclusion Network, http://www.faithinclusionnetwork.org , I have been blessed beyond measure. The world of faith and disability advocacy has enabled me to create and enjoy community not only with people throughout our area in VA, but also helped me connect with a national community of like minded advocates, people throughout the country working to make faith communities more accessible and welcoming for all. Although I recognize that not every parent can or should advocate beyond the needs of their own child, I wouldn’t trade my experiences for anything. I feel so blessed to be mom to Samantha and an advocate for people with disabilities and their families in our community.
Recently, we’ve had to do a lot in terms of advocating for our daughter. It took two separate meetings before settling on an IEP that we felt would be providing the appropriate education for her this school year, but I’m so thankful we didn’t just choose to settle for less and for all we learned throughout the entire process!
LOVED this…”My best advice for families is to slow down and climb into your child’s world instead of making them fit into our world.”
Recently, we’ve had to do a lot in terms of advocating for our daughter. It took two separate meetings before settling on an IEP that we felt would be providing the appropriate education for her this school year, but I’m so thankful we didn’t just choose to settle for less and for all we learned throughout the entire process!
LOVED this…”My best advice for families is to slow down and climb into your child’s world instead of making them fit into our world.”