I never thought I would become a parent of a child with a disability. When people asked, “Are you hoping for a boy or a girl?” Like many expecting parents, I responded with the cliché, “I don’t care, for as long as my baby is healthy.” Healthy, for me, also meant “typical.”
Jennifer Enderlin Blougouras in her essay, “Notes From the Deep End,” says that becoming a parent of a child with a disability feels like being pushed into the deep end of a pool, and you don’t know how to swim. And it’s true. So you kick frantically, gasp for air, and fling your arms hoping to find something — or someone — to hold on to. Suddenly, because your survival depends on it, you figure out how to float.
Parenthood, to me, was like a giant swimming pool. I saw other people in the pool and they looked okay. And, tentatively, I put my foot in the water. Suddenly, someone grabbed me from behind and threw me in the deep end of the pool. In the deep end! How unfair!
Jennifer Enderlin Blougouras
I never thought I would receive my baby with tears rather than joy. Dealing with my child’s diagnosis was difficult. I was heartbroken for my child, for me, for my family.
I never thought I would become an expert on medical terminology, with OT, PT, ASV, biliary atresia, or hypotonia becoming my second language.
I never thought my child would have an IEP (Individualized Education Plan) at school. For many parents of children who receive special education, getting the appropriate services for their children at school becomes one of the greatest battles they fight.
I never thought I would lose friends because of my child’s disability.
I didn’t know grief was part of learning to deal with a diagnosis, but after the grief comes acceptance and joy and an abundant life.
I never thought I would become a parent of a child with a disability. But I did. And it can be hard, and it can be exhausting, and it can be lonely… and it can be surprising. And it can be beautiful. Because this is parenting. The diagnosis just becomes part of the equation.
I never thought I had the strength to stand up to professionals to advocate for my child.
I never thought I would indeed become and expert, and that I would be the one educating people about my child’s disability, and their great potential.
I never thought that witnessing my child reaching a milestone, would mean the witnessing of what professionals said my child could “never do.” And those moments have you jumping, and cheering, and laughing because you are so proud of your child.
I never thought I would meet the most giving, compassionate, courageous people in other parents of kids with disabilities.
I never thought that my children with disabilities would inspire me, that they would give me a purpose and fuel me with passion.
I never thought my heart would expand so greatly and love so fiercely.
I never thought that my child with a disability would be the one to teach me about priorities, about what really matters, and about what makes us human, what makes our hearts beat.
I never thought I would become a parent to a child with a disability. But I am. It’s changed me. And I am thankful.
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I never thought that I would become a special needs parent – let alone that I would LOVE it. Who could ever see that coming??
Beautifully written Ellen! I’ve have been on a bit of writing break, but am ready to get back on track.
Thanks Ellen, for making me remember! Needed that this week.
I’m back! And yes, there are so so so many things you don’t think about before becoming a SN parent!
This is perfect. Love it!
I love this. Beautifully written!!!!
just beautiful. and so so true. thank you for sharing.
I can relate to so much of this, thanks for putting it into words.
Steph thanks for taking the time to leave a comment!
I am a special needs grandmother This is a beautifully written essay. Just to share: have you heard of the Anat Baniel Method? You can go to my website to find out more.
Yes! I have heard about it and looked at it a while back. I have not researched it enough, but thanks for the reminder and I will be checking it out 🙂
That’s exactly what it feels… Being pulled in the water and gasping for breath. I still have days like these, but I too have learned how to float. This is beautifully written and a perfect reminder of how we all didn’t think of the things we have all had to think about and yet it has changed us. Thank you!
Thank you, for taking the time to leave a message Mary!
Very well written! As a mother of a 20 year old son, whom I would not trade for anyone, I have discovered the conditions in the pool change often, more like the rolling sea; but I am stronger than I ever thought possible. My son amazes me more each day with all that he has accomplished. His diagnosis does not define him. He is capable and perseveres despite the odds. Thanks You for the excellent analogy of learning and relearning how to float.
Kelli, I think you are right! Just like sometimes we have to grieve all over again over certain things in this journey.
I’m not a special needs mom, but as a nurse I worked w special needs children. Then along comes my new marriage, and w it the eventual assistance w his special needs aging brother. It is as you said, being thrown into the deep end and trying to learn not ti drown.
Now 16 yrs later he is in a nursing home. His dementia and then an injury had gotten to the point that he was no longer safe at home.
I also have a darling Daughter (adult) who probably should have had an IEP and we fought not to label her. She is bipolar now. I wonder if we had been able to get that as a diagnosis 15-20 yrs ago if it would have made a difference in her life? In mine?
Carolyn, thank you for sharing your story! I don’t know if having a diagnosis for your daughter would have made a difference, but loving her and encouraging her, and believing in her certainly do make a difference. So keep doing that!
I love this. Thank you so much.
Who would have thought that I would become a Special Education Teacher? Who would have thought that, in 2014, I would have to fight so many to advocate for my kids? Someone should have told me how many times I would have to hear, “It’s always been done this way!” Even from those who profess to love working with children who have special needs- my toughest battles have been status quo and those who do not have the faith that these kids CAN achieve great things! I have to believe, because sometimes parents have been beaten back and no longer believe. . . I feel so lost sometimes! I just want to make a difference! Who could have known I would love teaching so much!
Thank you for your story, Ellen, it moved me. Especially at this time of high school graduation, which is so difficult for many families. A mixed blessing, to be sure.
Sheila, thank you for what you do! We need more special ed teachers like you!
Yes this is how it is as a special needs parents…. and no matter how tired we are… we still have to stay strong and move on.
I am a single parent of a special needs daughter.. She has a very rare BIRTH DEFECT. Ring 13, She is 34. Doctors said noway she could ever live ,walk talk or anything. Boy did we prove them wrong.
Me too.
Dear Ellen,
A friend sent me this post today and I have been reading through lots of your other posts. Thankyou for sharing your thoughts so honestly, helping me feel it’s ok that I have felt the same. My daughter doesn’t have DS but we experienced a pregnancy full of gloomy warnings from doctors, and when our little girl was born perfect we felt like we’d won. Then came the hearing loss diagnosis, the cataract operations, the failure to gain weight, the reflux medications, and the missed milestones. It has been such a hard journey, and yet she is such a delight. I adore her, and know that she is God’s gift to us. Thanks for reminding me. And Nichole is absolutely beautiful x
Thank you Amy. And you are right, although the journey can (and will) be hard a times, our children are a delight! 🙂
Being a special needs Parent was forced upon me. I took charge immediately and am very Glad God picked me to do this job. I would not want anyone to take my place. I to know I am all alone in caring for my son. No friends anymore, no family. So my child and I have each other and I am ok with that. We empower each other.
Cammie, I do hope you find a friend, it is hard to do this alone (and you are not alone, so many of us walk a similar journey and “get it”) but it is nice to actually have a friend that understands, listens, or to have fun with.
I never thought I would be a “Never Empty Nester”
Thank you for your words, very well put.
I have 5 children ages 29 to 10, I call myself the second time around mom because of my youngest children, son 16 (3 brain surgeries, cp & a list of brain disorders) and daughter 10 (severely autistic) and now in my 50’s and alone this is not the life I expected to live 16 years ago but God had other plans in store for me and here I am, lol with a smile on my face.
Your words ring so true for my life. Thanks again!!
April, thanks you for taking the time to share about your family and a little bit about your journey. A second-time-around mom, I like that description 🙂
So beautifully written! Your words really touched me. Only special needs parents truly understand the depth of the sorrow and triumph that comes along with it. Thank you for sharing and I hope I can become as strong and open as you some day!
Thanks Jessica, I think it is good to be reminded that we are not alone!
Beautifully written Ellen , I have a 15 yr old special needs son . I love him and would not trade for any one , still there are days when I feel like I am in deep end of pool and struggling for air .
Everyday struggles of life with these kids become so normal for us that we don’t even think about their diagnosis any more until another bout of sickness or emotional out burst then u feel yes grieve has a way of finding u again
Love the way you write , keep it up
Your post is well written and every word I can relate to. I am a mother of a child who had spastic quadriplegic cerebral palsy. My son passed away in 2006 at the age of 28. I wrote my son’s story and the book was released in March and available on Amazon and Barnes and Noble, Our Special Child: Jason’s Story.
I would like to have an opportunity to spread the word about my book. Would you consider either reviewing my book or interviewing me. I will send you the book to read, of course.
I believe young parents today who are just learning about their special needs child, will find my book to be resourceful, comforting knowing they are not alone in their feelings, and help support them in advocating for their child.
Judith, this summer I am doing a series on writers who focus on disability, what about you send me a guest post? Email me ellen at ellenstumbo dot com
I will and thank you for the opportunity to spread the word.
I have two special needs sons. Your comments and writings are beautiful. I saw something one time that said becoming a special needs parent is like packing for a vacation and thinking you are going to Italy, but then finding out you are going to Holland. It is nice, but not what you expected. I have been the Mom of a special needs child for 36 years. It has made me grow and enriched my life in ways I never imagined it could. I do not take anything for granted and am thankful for my two dear boys. May God bless you in your journey.
Phyllis, I heard that poem, “Welcome to Holland” before I had kids with disabilities, but it was shared during a presentation by a mom who had a daughter with Down syndrome, so when my daughter was born, I looked for that poem right away.
Your piece moved me to tears! I am also the Mom of a special needs son who is exceptional in every way. I blog about how he has changed my life and has now helped me find my purpose to live a life of happiness, wholeness and mindfulness. My blog can be found at http://www.exceptionalmomchild.wordpress.com. I will look for your Facebook page. Mine can be found at “Exceptional Parenting/Exceptional Balance.” Thanks for writing such an inspirational piece and sharing it!
Joanne, thanks so much for sharing your website, I just stopped by and read your about page, you are a writer too! Seems like we are on similar paths, writing about disability, yet also having a desire to write fiction. I really want to write fiction 🙂
I am doing a summer series highlighting other writers who focus on disability, and I want to extend an invitation to you, if you are interested, send me an email!
When i became a special needs parent, many times it felt like I had no oxygen to breathe. I couldn’t grasp the facts at first and still get stressed by my son’s future.
I think this is the best description I have ever read of being a worior and how it feels to take the daily battle on that is being a special needs parent. So true that I never thought….but I do, and it’s changed me, and I love it.
Thank you Ellen xxx
You are welcome Mandy.