Tuesday, February 17, 2009

Raising a child with special needs: a photo essay

It's hardest when they are very little. You assess their every movement, their every look. Is this normal? Is that? You fear what the future might hold. You wonder why it happened. Why.

As they get bigger, so do their personalities. And boy, can they have big personalities. So much bigger than their disabilities.

Sometimes, they have sisters or brothers to help. Or to fight. It's all good.

Sometimes, they figure stuff out by themselves. If they don't, maybe they will tomorrow, or the month after, or the year after. You learn that they are on their own timeline, and that is OK.

You still have moments when you worry that your child is staring out the window at the world as it passes him by.

But what lies ahead isn't as scary as it once was. You have a new sense of what "normal" means. You've found patience, strength, resilience and determination you never knew you had. And your love for your child? It is so much bigger than his disabilities.


  1. Great photos, I love the very first one...
    The people who do not have a disability, are the ones who define the disability... To Max, he knows no different... he does not define his disability, WE and the people around him define it for him... until the day comes he can make his own choice.

    Every disabled child should be treated as "normal" as they can... when they get older, they will thank you... (trust me). :-)

  2. Fun pics. I like the Max on the beach shot best! Good thing u take so many pics. I tagged u with a photo award today!

  3. You have such a beautiful way of saying things. The topic itself is so BIG, but your words are straightforward and speak to the basic feelings we all have as parents of children with special needs.

    That very difficult beginning becomes so much easier as time passes and we, like them, begin to figure all this stuff out!

    I love reading your blog - so glad I found it.

  4. It makes my heart ache to see younger pictures of Alex. It also motivates me to do more - more - more. Thanks for sharing!

  5. Beautiful pics! You know, we get out and have our fun when we can, too, but we're just so bad about memorializing it with a camera. That's my fault and I have no good excuse, really. We use the drugstore cameras because we just can't keep up with/afford the technology, so there's really no "I left the camera at home" excuse--our camera is as far as a Duane Reed or CVS away!

    Thank you for posting this photo essay--it reminds me that I really should take more family pictures. I can't always count on my momma to be the one snapping away! I get so busy sometimes it just isn't a priority, and it really should be a little higher on my "To Do" list.

    What a lovely family you have, Ellen! What joy you must get from them! And how lucky they are to have you!

  6. This was a beautiful post, Ellen. You made me tear up. :)


  7. I love taking photos of the kids for all sorts of reasons: I know they're at such a precious age right now, and I sense that I will someday wish I'd taken even MORE photos than I already have (that's how I feel when I look back at Max's baby photos, anyway). It's also a great creative outlet, I don't have time for many other hobbies right now. And it's therapeutic for me, too; Max is so full of life, and seeing him in photos reminds me of how lucky I am, even on days when I feel less so. The only problem is organizing them in photo albums! (I prefer not to just store them online.) If I ever won the lottery, I would pay someone to keep up my albums. :)

  8. Beautiful post. I love reading the blogs of parents who have been "at this" for a while. I'm a year into Bennett's diagnosis and although the clouds have lifted I still have a hard time seeing the sun sometimes. Your blog reminds that the some of those clouds will always be there but it does get so much better as you grow with your child.

    I love the pics too - especially the beach one!

  9. I loved this photo essay! Great post!

  10. Wonderful pictures - you can really see his big personality shine through!

  11. Loved the photo essay. Truly.

    Would you like to share it on the kidz blog sometime? Let me know.

  12. Love, love, love it! What an amazing post. Thanks for sharing!

  13. wow ellen! that is beautiful. you rock. sending hugs! xo

  14. Beautiful post! Love the pictures that help tell a story. Brilliant!

  15. i am so grateful i found this blog.i have two children who are both needs special attention,my son is 13 years old but diagnosed to have a global developmental delay and my daughter is hearing impaired. i am proud of them seeing them cathcing up....i love them both and they are our blessings and treasures


Thanks for sharing!

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