Wednesday, October 7, 2009

10 things I could have never, ever imagined about having a kid with special needs

10. First off: I never imagined I would have a kid with special needs. I wasn't one of those overly concerned pregnant women. I always assumed (how could I have been so presumptuous?) that my baby would be born like any other healthy baby.

9. I never imagined I could be a strong as I am. I mean, I was never a pansy. But I have been determined, durable and Energizer-bunny-like beyond anything I thought possible.

8. I never imagined the grief over having a kid with special needs would subside—especially during the early years, when everything was so ominous and scary and terrifying. But the grief has subsided. Or, rather, it has retreated to a place where it doesn't rear its head all that often.

7. I never imagined that my child would be doing as well as he is. When doctors say that your baby may never walk or talk and could have severe cognitive deficits, it is hard to wipe their words from your psyche and soul, even as you do everything possible within your powers to make your child succeed, cheer him on and hope, hope, hope.

6. I never imagined what an incredible father my husband would turn out to be. You always figure the man you love would make a great dad, more or less. But he is the most hands-on, hardworking, caring, concerned, hug-giving father of any dad I know.

5. I never imagined the incredible help and support I would get—from family, friends, teachers, therapists, doctors, the insurance company (well, on occasion) and other parents of kids with special needs. Especially all of you. It's easy to feel alone when you have a kid with special needs.

4. I never imagined how absolutely wanted a child with special needs could be. Is that terrible to say? Until you have a child with special needs, it's easy to look upon them as a burden. I used to pity the moms at the mall or in the park who had a kid with disabilities. Now I'm that mom. And I am so not someone to pity. Neither is my son.

3. I never imagined the fun I could have with a child with special needs. Every-kid fun, like playing baseball, going to amusement parks, crashing toy trucks, rocking out to kiddie tunes, pretending to be a scary monster, giggling over total silliness.

2. I never imagined the ebullience you experience when your child with special needs does something for the first time.

1. I never imagined I'd look at my child with special needs and not see the special needs. But today, I look at my child and all I see is an amazing kid.


  1. love this post - I have a lot these thoughts scrambled in my head - you have a great way of putting these same thoughts into words!

  2. Another wonderful topic!

    I never thought I'd have kids...period! Talk about a path not planned for!

    Isn't it something, how the unexpected, unplanned, and even what you thought might be undesired can somehow become not just the norm, but the "preferred?"

    And isn't it something, how when life hands you lemons, you find a way to make some really delicious lemonade? Or chocolate ice cream at the beach house, if you prefer?

    What I never imagined is how many "friends" would fall off like gangrenous limbs when my circumstances changed--but what I also never imagined is that I don't miss those fair weather phonies one bit! You really do find out who is important in your life when your life gets serious. I am so lucky to have parents who would do ANYTHING to smooth my path--everyone should be so fortunate as I am in that regard!

  3. I can totally relate to all of these but particularly to numbers 4 and 1. I am completely amazed that when I look at Ashlea I don't see the disabilities all I see is HER - I don't think I ever thought that was really possible before. Same with number 4 - we love Ashlea so much and do not view her as a burden in any way - she is a delight and a joy and a blessing - never a burden - I'm not sure all our friends see it that way though.

  4. Amen! Great post...worthy of the sidebar!
    The biggest blessing of my life, which I never thought I'd say.

  5. I could have written this !! thank you! what a beautiful post! god bless you!

  6. Wonderful post as always. Thanks for sharing.

  7. Oh, I could have written this one!

    Especially the pity part. When I get the pity look from other Mommies I just want to shake them and say "I wouldn't change a single thing about him!!" But I doubt they'd believe me.

  8. I'm looking forward to a time and a place where I can get to that top ten. Not there yet, still too early in the anger/frustration stages, but I do have hope.

  9. I agree! My daughter is the best thing in my life, and I don't have any other children. She has CP. She is in a wheelchair and can't walk. She's 21 and all grown up.
    But, she's still my sunshine, and I would NEVER trade her for anything or anyone.

    I sort of think I have it better than people with "normal" kids. She's so very special. She's never met anyone who didn't like her. I've never met anyone as wonderful as my Amber.

  10. Thanks for this. It has really brightened my day.

    I would also say that I never imagined that having a child with special needs would change the way I treat the people around me. My son has taught me to respect differences in all their shapes and sizes.

  11. So so true. I also never thought I'd get past it all in the early years. And while my autistic child isn't my first kid, I think my husband has become a better parent because of him.

    So from my perspective, I'd love to add my own addition- I never imagined the whole experience would improve my parenting overall, and enrich my life so much, and that I'd actually be grateful for it.

  12. Wonderful! This whole list resonated with me but especially the part about seeing people at the mall and pitying them. I was the EXACT same way and now I'm all "pity me? I have a great life!"

  13. Ellen - another wonderful post! I think this is up there with the Bill of Rights. Thanks for sharing.

    I see you already received the Lemonade Award, but I nominated you again anyway. I just love your blog and want my readers to stop over here. No need to pass it on again, just wanted to let you know that you (and MAX!) inspire me.

  14. OK, I left one out: I never thought I could have a kid who was SO handsome! (I just didn't want Max to get a swelled head, although maybe come to think of it that wouldn't be so bad cause he has microcephaly.)

  15. AMEN to #4 !!!!!

    I can't tell you how much that resonates with me RIGHT NOW!

  16. Thank you for this - I needed to read #8. I am still in grief, and even though Hannah does well in the big scheme, and compared to many who have far greater obstacles, I am so full of hurt for what it means for her. Sometimes I can remember that she only knows who she is right now, and doesn't see herself as limited, but I only see the world that way sometimes. I know I'll do better, I'm sure I will be more able, but right now I still feel blindsided and overwhelmed. Thanks for showing me the rest of the story!

  17. Can I chime in a the "semi-pro"? #7 I hear (and have heard most often) and it's really weird to hear, and realize once you realize the gravity of it all.

    That's all I have to say.....except watch out for vocalizing #7 around kids CP or otherwise. Most of "us" don't see ourselves as different so it's strange, and sometimes hurtful, to hear.

    OK I'm done now....Ellen, I'll just email you with anything else. My energy is coming back (Can you tell?)

  18. Bravo! From one special needs mom to another, thank you for posting this. Every word you wrote is so true in my life too and I thank you for sharing your thoughts.

  19. THANK YOU for #8...I can't imagine this grief subsiding but it's so great to hear that it just might. We're only a year in (Ben was diagnosed just after his first birthday) and although it's better than a year's still very very very hard.

    And just one more thing. Max is are you. Love your blog. I'm now an addict.

  20. this is an awesome list. i love it!! xo

  21. I love, and I am paraphrasing due to exuberance, how easy it is to feel alone as a parent of a special needs kid...soooooo true...

    I like how you are taking my random thoughts and organizing them and spilling them on to the so true, all of them...

    I never knew I would be so strong...and the best part of special needs...their world through their eyes...its so great. When other kids are rolling their eyes and what not...mine is drinking in what ever is going on...Christmas, etc...I like that part...

    1. Elle,

      Sorry if I'm petty but I detest the words special needs child and special needs parents. Those two awful sounding words suggest the special needs is so big it buries the child or the adult.


      There is no better way to extract pity from people then if you use pity extracting words like special needs child and so on. And, I should add- inclusion starts with PFL, people first language.

  22. I never imagined the grief over having a kid with special needs would subside—especially during the early years, when everything was so ominous and scary and terrifying. Umm I can say I dont feel terrified or scared any more. And Amelia is only one.

    It took me 3 weeks to accept the fact Amelia had CP, that's how mild it is. My girl only has spasticity in one limb, her left leg. Despite the CP, she can walk fine.

    I have high hopes for Amelia and hope to be able to send her to regular school when she is 6. I am not worried about her future given that people with monoplegia have a good prognosis for later life. Amelia is unique- I was told this kind of CP is rare, really uncommon.


Thanks for sharing!

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