Suddenly Special Needs

bike riding
Image via Amanda Rodriquez

Earlier this year my youngest son came down with an aggressive strain of strep throat.

He got super sick.  Missed a bunch of school.  And, is actually still recovering from it now, 5 months later.

You can read more about our experience here: Post Streptococcal Glomerulonephritis.

In addition to the acute medical issues he faced, we’ve also been tasked with adjusting to life with a newly diagnosed special needs child.

Now, don’t get me wrong, we are so grateful that his recovery has gone so well and that he is even still here with us to smile and play and get into trouble.  Because for a few days there, we really weren’t sure he would be.

But, when I think about what we call before “The Illness” versus how things are after “The Illness”, it’s like we are living two different lives.

#3 has always been a gifted child.  He’s extremely smart, performing well above grade level in both reading and math, and there’s just always been this thing about him.  Like he’s been here before.  The things he knows and understands are not similar to things other children his age know and understand.  Add to that the fact that he has this huge personality bursting out of him.  He’s funny, and fun, and everywhere he goes there is this group of people (children and adults) who come up to him to enjoy a little of his awesome.

That hasn’t really changed.  He’s still all of those things.  But, now he’s also some other things.  He’s paranoid and frightened by irrational things.  He hallucinates and has night terrors.  He has developed a chronic tick disorder, has frequent anxiety attacks, and can’t leave home without hand sanitizer and at least two beverages.

Life BEFORE was just simpler.  We didn’t have to schedule sports and vacations and life around his appointments with his specialists.  We didn’t have to worry about if something was going to “set him off” or if he was going to be able to do regular, every day kid things, like go to school and play soccer, without support.

Life BEFORE felt more certain.  More predictable.  More free.

…just take a beat to consider…Think about the possibility that that little boy went to sleep one day healthy and vibrant and totally restaurant capable, only to wake up the next day with an illness that would change all of that for him. And then consider how you would feel if that were you.

I have a new found respect for parents of children with special needs.  I appreciate the challenge they face when it comes to managing something the rest of us take for granted, like a family dinner at a restaurant, or a bike ride through the forest.

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Things like spontaneity and, um, ice cream are hard for us now in a way that they just didn’t used to be.

This experience has given (and taken) a lot to our family.  It’s tested my fortitude.  It’s put stress on our marriage.  It’s caused me to reevaluate my life and realign my priorities.

And, it’s given me perspective.

If I could give one message to other parents who like to judge it would be this: next time you look around a restaurant and wonder why that one big boy is crying hysterically while his mom just holds him and whispers quietly in his ear, before you judge their parenting, before you text your friend or make a comment to your husband just take a beat to consider.  Consider that maybe that mom is counting to 100 in that little boy’s ear because it’s the only thing that will calm him down.  Think about how that family is maybe trying to cope with something no one can see just by looking at them because sometimes children with special needs are adorable little boys with bouncy curls and bright smiles.  Think about the possibility that that little boy went to sleep one day healthy and vibrant and totally restaurant capable, only to wake up the next day with an illness that would change all of that for him.  And then consider how you would feel if that were you.

What do you think?

Suddenly Special Needs

Amanda has been wowing the Internet since 2008 when she launched her pretty-much-useless guide for parents, parenting BY dummies. As it turns out, her parenting advice is not generally useful for more than a good laugh, but sometimes that’s exactly what you need! Amanda spends her offline time (which is embarrassingly limited) running a photography business, working as a social media director for a local magazine, writing freelance articles about stuff she loves, wrangling her 3 little Dudes ... More

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8 comments

  1. Virginia says:

    Wow!I have been walking in those same shoes since Sept. 2011. Our son was then in further grade and a series of health events caused him to have a strep explosion. Absolutely horrifying in the intensity. We are dealing, day by day. Things got great and we relaxed some of the meds but that didn’t work. Good luck and know there are others of us parenting through much craziness.

  2. Jennifer says:

    Cady has a huge amount of anxiety, not to this level, but I can see how a serious illness would send her down a path I’m not sure I could pull her back from. I worry about it all the time, which is ironic considering worry is her issue. I hate this for both of you. Because you both live in my heart and I know that you deserve better. So much better.

  3. Wow Amanda, I am so sorry for all that you must be going through! Thank you for sharing your story…so many of us are way too quick to judge. Your little guy sounds like such an amazing little dude…I’ll be thinking of him and your family, praying for a speedy recovery! *hugs*

  4. We have been in the same shoes (different issues, however) for many years. It’s heartbreaking to see your child struggle with things that *should* be easy. I’m so sorry for him, for you, and for your family, but if there’s one thing having special needs kids has taught me is that we find more joy in the simple things in life because of them.

  5. Heather says:

    I am assuming that your little dude has something similar to this http://www.nimh.nih.gov/health/publications/pandas/index.shtml

    Earlier this school year I worked with a little boy in one of our Kindergarten classrooms who also had PANDAS, it was the first time I had ever heard of it. I know that it was super scary and frustrating for everyone involved, especially of course the little boy and his family. The good news is that after a couple of months the little boys symptoms subsided as quickly as they started. The family works closely with their pediatrician to help with any reoccurances.

    I feel for your family because I know for me, as just an educator working with a child, it was heartbreaking and even more heartbreaking to hear and see the frustration and sadness of the parents as we worked through the diagnosis and symptoms. Wishing your son good health and quick healing.

  6. Jennifer says:

    Thanks so much for sharing your story, Amanda. People are SO quick to judge sometimes and it’s good to have a reminder that everyone has a story–and it’s not always the story you dream up about them.

  7. Wait, strep throat caused this??? Wow

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