The Thing You're Not Supposed to Say When Your Child Is Special Needs

monkeyThere is something to be said for those small moments, moments where there are things we can fix, Band-Aids to be applied, kisses to be given, Scotch tape, and glue, and staples ...

And there is something to be said about the needle and thread I hold now in my right hand, as I clutch a little blue and gray sock monkey we found in the back of my almost-4-year-old son Owen’s closet yesterday as I was doing some New Year’s cleaning. He asked to bring it into his crib to join the menagerie of dolls and stuffed animals that have nearly overtaken the space where his little body goes to rest, and I said it was fine, only stopping him when I happened to glance over and saw some stuffing emerging from the little monkey’s right leg.

I assured my boy that I would fix the monkey’s “boo boo” and return him right after Owen’s nap.

And I sit here now, clutching this little monkey, and find myself suddenly confused as to why I am weeping as I lovingly sew his injured leg back up.

Something so simple -- a needle, some thread -- can fix so much.

It’s something so maternal, so natural, to want to mend, to care for, to fix as a parent. It is something that I can easily do for this silly monkey, and yet feel as though I am constantly failing my son in that same respect.

Where is the beautiful simplicity of the needle and thread to fix him? He is not broken in the sense that I would return him or want another version that needed less repair -- but there are so many parts of him that need to be worked on, that need to be mended, that are misunderstood, or baffle the broad community of specialists and therapists and doctors we have built up around him like a fortress.

And still, there he stands, as though in some sort of bubble that we cannot break, cannot pierce, in order to understand him, to save him from himself and others that don’t understand him and  that don’t -- or one day won’t -- care enough to try before rejecting him.

Where is the needle? Where is the thread?

How did this little monkey become a symbol for how simple it was supposed to be? How much my dreams for my boy have had to be continuously ripped open, then sewn back up with a thread that is clearly not strong enough to hold.

What if I am not strong enough?

How do I mend him? How do I help him? I think I am doing what I can -- maybe even all I can -- and it never feels like enough because something new always comes out.

His speech is improving, and his behavior is deteriorating.

He understands more, but I understand him less -- he screams at an eardrum-perforating pitch with clenched fists and tears springing to his eyes and cannot tell me why.

His sister is embarrassed by him.

Sometimes, I am embarrassed by him.

Oh God, that’s so horrible to say, but it’s true. Sometimes, it’s just true.

And I’m not supposed to feel that way because I have a special needs child. It would be okay if he were typical and screaming his head off in the lighting section of Target. It would be funny to complain or tweet or post a picture somewhere of my tantruming almost-4-year-old. I would have other moms shaking their heads because they can relate, they’ve been there. There would be reassuring comments on Facebook or Instagram and funny little vignettes via text from friends regaling the times something similar had happened to them.

But not if he has special needs. There are different rules.

I’m supposed to say he has the Autism “Superpower,” or the “Magical” brain malformation gene where he has the ability to make part of his brain disappear from the MRI images right before your eyes (only to have other parts magically appear as a dark cloud within his gray matter all at once -- also called a stroke. Or would that be an “Enchanted Stroke”?).

Do I sound somewhat bitter and jaded about some of this? Well, I am.

I am not that mother -- I don’t buy into this being a superpower or magical gene. Nothing about this feels otherworldly.

Unbelievable, maybe. Dream-like? Occasionally -- but not in a good way. There have been no unicorn spottings here, no leprechauns, we don’t even have a box of Lucky Charms in the house (partially because food coloring “magically” turns both of our kids into maniacs). I dearly wish I could be -- that I had that cheerful outlook and optimism that I see and hear about and read about from so many other mothers in my situation.

For me?

It. Just. Sucks.

Do I love my son? Absolutely.

Do I wish that he didn’t have this myriad of diagnoses? Yep.

Do I wish I could magically fix him (for whatever that word means here)? Of course.

But I have not found that thread yet. I have not seen evidence that it exists alongside these “superpowers” and this magic that we have supposedly been “lucky” enough to inherit along with Owen’s genetic soup.

So we will try, and we will fail, and we will succeed, and we will have triumphs and setbacks, and I will keep my sewing kit as fully stocked as I possibly can.

Because there is always mending to be done.

Because I am his mother.

And he is my thread.

 

About the Author: Jamie Krug calls herself the luckiest mom, wife, and woman alive, and she spills it all over at her blog, Our Stroke of Luck. She is mom to two kids, including Owen who had a stroke shortly after birth. You can follow her on Twitter at @JamieKrugAuthor, on Facebook or on Instagram at @JamieKrug.

 

Image via Jamie Krug

toddler health, special needs, autism

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jkimb... jkimbrough

I love the way you express your thoughts. It helps me realize that I am not the only one who feels this way. Kids are hard work and when you have a full time job it makes it even harder. Thank you for being honest about motherhood.

Einyn Einyn

Beautifully honest.

Laine... Lainey0468

Awwwww.....I don't have a special needs child but I felt your frustruation being spilled onto your blog....all I can offer is a great big hug - to both of you!  you rock

EmilyKC EmilyKC

Awe this made me cry😢. You sound like a great mom and your sons lucky to have you😊

lucky... luckymama2girls

Jamie, you should know I feel the same way and for the exact same reasons. While Katie doesn't have Autism she has been enhanced with the spectacular stroke and her sister was lucky enough to get the awesome ADHD. I feel the same. I don't think it's wonderful. I think it sucks about 99% of the time. I guess one of the only reasons I can find to be grateful for Katie's stroke is that I got to meet you and all these other wonderful women with enhanced children who I now think of as friends and part of my family. 

Rando... Randomlady

This was the most honest thing about autism that I have ever read, I'm so glad to see it. When your child is non-verbal and constantly having outbursts and noone understands it's just too much to handle.

JuliaH JuliaH

Brought me tears cause i feel the same...my son is now 11 yrs old though things have gotten better he is still living inside of himself...id give my life just so he could have a so called mainstream life..but in my eyes he is the greatest gift under heaven and nobody but us mothers of special needs children understand...keep fighting dont ever give up! Much love

nonmember avatar Alexandra

As a mom with a now 21 year old with autism, I understand you completely. It will never be easy and there will be "twangs" of feelings along the way that you'll wish you never had (goes along with trying to be supermom all the time :-)) but we love them so much and that will always shine through. Yours shined through your article perfectly :-)

Gemin... GeminiMama2010

I can honestly tell you that I feel the same way. My daughter is 4 with an ASD diagnosis. Though she is high functioning and very smart I wish, for her more than for me , there was something that could help her. There is absolutely nothing like seeing the pain, anger and utter confusion in her eyes when she has a meltdown. No child should have to live like that. Since she had a early intervention, we started schooling in home at 2.5, things have gotten better and the meltdowns fewer but when she has a meltdown now it seems to last longer, be more violent both towards me and towards herself and they are louder. I love my daughter more than anything in this world but I do wish there was something I could do to help her.

nonmember avatar Jamie

This is my first comment EVER! I had to do it because this hit home for me! When my son received his diagnosis I was angry, worried, and felt "cheated" of having a "normal" experience with my only son. One major low point was when a well-meaning friend was trying to make positive statements of how it would be alright, and I yelled at him, "You wouldn't feel that way if it was your son!" But you know what, it IS alright. Now he is a healthy teen who has learned how to express himself and manage living and working with others. I saw my role as being to explain (in very simple and literal terms) how he should interact with others in every situation as it came up naturally in life, and this helped him. Now I feel honored that I could be there and teach and care for him, and I see now it has been one of my greatest achievements. Just love him and yourself everyday and FORGIVE yourself (and others) for the "tough spots" when you get frustrated, because it's only natural that will happen. Life is short for ALL of us and in the end it's all about love xoxo

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