Wednesday, March 21, 2012

On the road of special needs parenting


NOW

"Eeeyah yah ah eeeyah ah ah AH!" says Max.

I'm driving our minivan, and Max is babbling in the backseat. I listen, happily, occasionally peeking into the rearview mirror to watch. I am not sure what he's saying, but there's intonation there and he sounds like he is having the most awesome conversation with himself. He seems to love the sound of his voice.

I sure do; for years, I never thought I'd hear it.

THEN

Max is 18 months old and I am driving him to aquatic therapy, one of the 12 sessions of therapy he gets every week. My boss lets me work at home one day a week and on Friday mornings, Max and I head to the pool at a local children's hospital. He doesn't like it so much, but the warm water helps relax his stiff muscles.

"AH!" says Max from the back seat. "AH! AH!"

I am astounded. Max barely makes any sounds at all, none of that babbling I've heard from babies. The stroke he had at birth caused some serious brain damage. His brain is not like other kids'. That, I know. But I so want him to babble.

I am giddy. This could be the start of the babbling. He is so going to prove those NICU doctors wrong, especially the grim-faced geezer who told my husband and me that we could sign a Do Not Resuscitate if we wanted to.

For years afterward, Max doesn't make a single sound in the back seat.

NOW

"Max, do you want to get ice-cream later?" I ask from the front of the car.

"Eeeyah!" says Max. ["Yeah!"]

I think that perhaps "Eeeyah!" is one of the best words ever. It's Max's version of "YES!" and "HELL, YEAH!" He says it so enthusiastically every time and more importantly, he says it. He has, of course, also mastered "NO." He likes to say it emphatically: "Noooooooooo." It was Max's first word.

I never knew "No" could be such a welcome word.

THEN

I've just come from an appointment at a doctor's, and I have to pull over to the side of the road because my eyes are full of tears. I am tired. Tired of spending all my free time with therapists and doctors. Tired of the hopelessness and despair and thinking that my life will never be OK again. Tired of not getting to just enjoy my cute toddler with the chubby cheeks, bright eyes and big smile. Tired. I sob for a while, Max sleeping in the back seat as cars whiz by, and then I pull out and drive on.

NOW

"Arr wah!" says Max. We've just passed a car wash, one of his favorite activities in the whole wide world.

"You want to go to the car wash?" I ask, rhetorically. Because I know the answer.

"EEEYAH!" says Max.

"How many times do you want to go to the car wash?" I ask, again knowing the answer full well.

"Oooooh," says Max. Two.

I love talking with my boy. We go through the car wash twice.

THEN

Dave is driving and I am sitting in the backseat with Max. He's three. I'm reading that Dr. Seuss book Hop On Pop to him.

"Hop!" I say to Max. "Can you say 'hop?'"

Max looks at me.

"Ha," I say. "It sounds like that! Ha, ha, ha. Can you say 'Ha'?"

Max looks at me.

My heart slumps. Nothing's working—not all the speech therapy, the flash cards, the endless talking to him. The speech isn't coming. Not even sounds are coming. I put the book down on my lap and stare bleakly out the window.

NOW

I'm at home and Dave calls from the car, on speakerphone; he and Max are out running errands. I hear Max in the background, babbling. Dave and I talk, and he hangs up. Then he calls back.

"Max wants to say hello," he says.

"Ohmmmy!" I hear. "Ohmmmy!"

It is the most beautiful word ever.

If the doctors could have told me back when Max was a baby that at 9 years old he wouldn't be fully able to speak, I would have been out of my head with sadness. A 9-year-old who couldn't talk? A 9-year-old still babbling?  

Now, I am only grateful. I'm thrilled that Max has the desire to communicate, thankful for his progress and ebullient to hear him playing with sounds. No matter what lies down the road, I know he will be fine... and so will I.

This is exactly what I want to tell moms who are lost in the fog of grief: It will be OK. Whether your child talks as you consider talking or does it in his own way or doesn't, whether your child walks as you consider walking or does it in his own way or doesn't, whether your child learns as you consider learning or does it in his own way, you will both be OK.

No matter how much pain and despair you feel now, slowly but surely you will get to this place called "acceptance." Because as your child develops, your heart and mind will progress, too:

You will be less sad. Even though at times the hurt will still come your way, it won't be as intense as it once was.

You will quit peering into the rearview mirror of what-might-have-been.

You will stop constantly worrying about the delays and missed milestones and realize that kids with special needs travel at their own speed. There is no race.

You will stop freaking out about what lies ahead and learn to see the wonders of your child.

This is the road you will travel as the parent of a child with special needs. And things will get better as you go along. So much better.

That, I promise you.


iStock/DNY59

37 comments:

  1. Thank you so much for this blog. Your writing lifts me when I need it most.
    kct

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  2. beautiful - for some reason, this piece brings to mind my favorite poem, The Road Not Taken by Robert Frost.
    I needed to read this today - thank you.
    Kristen

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  3. I loved that post! Thank you. Your blog helps me a lot.

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  4. As always, wonderfully written and just what I needed to hear. I am at that 2 1/2 year-old stage where we have been trying so hard to get some communication and sometimes I get so sad and frustrated. Thank you for reminding me that everything will be ok. :)

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  5. I wish I could have read this post about 3 years ago. I can so so relate to the "then" and "now". I love reading your blog, but this post especially. So encouraging!

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  6. Needed this today. Having a slight regression to the 'then' feelings with a big appointment scheduled for this afternoon. Need to remember to focus on my little one's love of life, how far we've come and how much we continue to grow rather than what some doctor says. Thanks for writing this!!!

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  7. I feel like I'm living a parallel of your "then" life, we've been working with ECI for my 25 month old since he was 18 months, trying to help him communicate something, anything! Though we haven't been officially diagnosed yet, our therapists are leaning towards PDD-NOS. I feel some grief, still "peering into the rearview mirror of what-might-have-been." I feel isolated, but since I found your blog, I'm feeling a little less lonely, and as corny as it may sound, I see you as an idol a little more everytime I read a new blog post from you. Your road has been so much harder than mine thus far, and you have an amazingly strong attitude, I just want to be able to be as strong for my son as you have been for Max. Thank you for sharing, I've been feeling terribly guilty about feeling so sad about my Evan's developmental delays, but am relieved that I'm not alone in feeling like this.

    Janet B.

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  8. thanks so much for this post.

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  9. You just do not know how close you hit home with your post. Just when I started reading your post I sat at the computer crying, thinking about my appointment with the speech therapist yesterday, where she informed my why my 4 year old son has such difficulty learning to speak. And that it will still take a long, long time until he (hopefully!!) will be able to speak. God, how I wish he would learn to speak! Some days I think I just cannot take it anymore.

    So, reading your post has made me cry even more but, on the other hand, comforted me a little bit. Although, of course, I am still so sad and frustrated and full of despair. But it is good to read that others go through this as well. Thank you so much, Ellen!

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  10. Thank you for sharing your journey with us. We have a lot of people in our lives with special needs kids and adults and it is so important to know you are not on that road alone. It is also so important to be human in the journey, not the perfect person who weathers it all, but someone who feels the storms.

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  11. Thank you so much for this post.I cried my eyes out reading. I've been struggling through this the past few days and your post was a great comfort.
    My son was born @ 28weeks and suffered grade 3 and 4 bleeds(IVH) and has a shunt. While things are better then predicted he's still pretty delayed (he's 8m corrected and can't sit,lift his head for more then a few seconds on his tummy, use his r arm/hand-which is beginning to extend down his leg, sounds are almost non existant- what I wouldn't give to have him babbling away while playing or mimic.He rolled over for the 1st time on sunday:D a monumental moment for all of us.
    I'm so grateful to have come across your blog a few weeks ago.
    Thank you so much for sharing

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  12. thank you for this . after the news I got at the doctor yesterday I really needed it . my beautiful perfect 18 month old daughter has been diagnosed with a neurological disorder that has made her physically disabled . but no neurologist will see her until she is 2 years old. therefore we have no idea what disorder she has. I have been in shock most of the last 24 hours . but I know that with time, prayer and much therapy she will overcome this. as a mother I never wanted anything difficult for my children . and now my youngest has to go through a very difficult time . and it breaks my heart . so thank you for the encouraging story . it helped me realize that things will get better .

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  13. Awesome written, so touching, you are a great communicator. I know this "may be" hard for you. Always love Max.

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  14. Beautifully said, wonderfully written! So very true. Thank you!

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  15. Lovely, lovely post. I am an EI speech therapist and this really touches home with me. I'd love to use this post as a reference for some of my parents.

    I truly enjoy reading your blog every day. It helps me be a better therapist :)

    Blessings to you and yours .....

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  16. Thank you for reminding us today of the beauty and wonder of hope. Even if sometimes we are not quite sure what to hope for.

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  17. Ellen, you are a wise woman! I remember when Billy was 3 we found a speech therapist and she worked with him a few times and then said "There is no use continuing; Billy won't talk until his brain gives him something to say."

    Now, at 56 years, Billy communicates with family, friends, and customers at the store where he works. He has some unique expressions but we find that others adopt his words. Keep the faith and continue encouraging others.

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  18. Thank you, thank you and thank you some more!!

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  19. Thank you! My 10 year old has finally, I realized last night, been able to figure out what the day of the week was and how many days are left until the end of the week (and the start of Spring Break). I thought about how we were heartbroken to learn that she would be congnitively disabled but now I'm thrilled that she's made this progress. You said it better than I thought it!

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  20. It took me a while to accept that I was in a wheelchair. But I am doing so much better. So I understand what you're saying. It takes a lot of support and encouragement from people you love and care about.

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  21. Thank you. I needed to read this today.

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  22. Love it! We never take anything for granted...yet I do sometimes with Lancelot and I am amazed that he has lived long enough to get om nerves at times. He is a teenager! Could we put a sign in Dr's offices, NICU, PCIC, ect that says The Doctors don't know your baby! There is always Hope!

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  23. Thank you for this post, I love your blog, and this rang true with me in particular, I am definitely in your 'then'! My son is 12 months with severe delays, undiagnosed but suspected genetic syndrome. With regards to his speech, he vocalises a lot, lots of intonation, no consonants. I live in hope. I talk and sing to him all day long but as the weeks and months pass by and he says nothing it's getting harder not to panic...

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  24. Absolutely! Wish we could go back in time and tell ourselves this!

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  25. Thank you so much for this post! I am definitely in your "then". Your post gives me comfort. My son Carter is 19 months old but has suffered 2 strokes. And I definitely know the feeling of all the therapy sessions and doctors appointments...

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  26. Thank you for writing this. I needed this today. We have been doing the therapy thing for 7 months now and have close to 12 appts every week. Most days I am positive and feel I am handling it well and we are in the "now" phase you talk about. But some days it is just hard to get out of the "then" phase. I hope this passes soon as we have a million things tomorrow. I know what you mean by just feeling "tired". Some days I am just that - I am tired and I need a pause button for my life. I don;t want to run away, not do my part or wish for something else - just pause so I can catch my breath.
    Erica L.

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  27. Your posts always remind me that even when we think we are being weak, petty, ungrateful (all the things a SN mom's inner demon can come up with) we are alway Wonder Woman. My daughter is two and has just started to say Mom. It is the most wonderful thing ever!

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  28. My cleft-affected son did not drink through a straw until he was three years old. I remember being in the middle of a resteraunt with my sister and Eli wanted a drink of my Diet Coke. After months (or maybe a year or two) of therapy focusing on straw drinking nothing had worked. That day I handed him my Diet Coke and said, "You can have it if you use the straw.". He did. I cried. My sister thought I was crazy! You know, I have 2 other kids and I have no idea when they first drank through a straw, but the day Eli did, that was magic. I decided that a lot of times, when kids have special needs, the milestones are even more sweet-- no matter how old they are when they do them.

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  29. Lovely!

    It's all about having our eyes opened -- isn't it? Gaining the perspective that can only come with our experience about what really matters.

    I think you will appreciate this update on Ben's birthday party/friends

    http://bloom-parentingkidswithdisabilities.blogspot.ca/2012/03/party-boy.html

    Cheers!

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  30. This post is a keeper! I wasn't able to respond when I read it on my blackberry and I couldn't wait to get home tonight to write and thank you! I was smiling and weeping at the same time.

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  31. I wish I could bribe my son with something, but he doesn't understand. I need to potty train him he's 6.5 with DS and Autism. He had no clue what's happening. Any ideas? He screams and won't move with undies.

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  32. This is absolutely beautiful. You have such a gift. I have been sharing your work with a dear friend of mine who is just beginning this journey. This post is one that I will make sure she reads.

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  33. God, this post hit home with me. Thank you so much for writing it. I could relate to so much. If you had told me back then that my 6-year-old wouldn't be potty-trained, that he'd have very few words and still be babbling, that he'd still be drooling - I would have been a total basketcase. But here we are, and it's really OK. At times, it's a lot better than OK.

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  34. Thank you, Ellen! I'm glad to see this up. I am going to use it to send to a person who just wrote to me that her 6-month-old was diagnosed and she feels like she "wants to die."

    For myself, I find I keep repeating "Life is a marathon, not a sprint." It's hard to remember that taking a few extra years to learn a skill isn't as big a deal as it feels at first.

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Thanks for sharing!