December 17, 2011

I Keep Forgetting My Kid Has Autism

Sometimes I forget my son has Autism. Yeah, I know, but don't get in a tizzy just yet Autism parents. After diagnosis, it is all you can focus on, the behaviors, routines, stims, speech, diet, therapies; how do you forget that your son who you drive a 70 mile daily roundtrip, 5 days a week to therapy has Autism? I suppose over time, it becomes less Autism, and more of who he is. I don't want to say my son is Autism, he is not. I suppose I have conditioned myself to look past those behaviors and his struggles so much, that I see him for him. A smart, funny, loving little boy. I suppose those behaviors that once stood out, commonly referred to as, "red flags", fade to gray overtime.  {At least in my mind}  So when Autism rears its ugly head, and not just rear, but comes knocking with fangs and fire, I'm shocked back to reality. And then I think, ugh, Autism.

I usually don't write much about Autism. As I've said before, this blog is my escape from Autism.  But it does and should find its way here, it's woven through our life.
This week Autism kicked my ass. Hey Autism, could you have waited a week, until I didn't have crazy cramps, headaches and bloating? Of course not, Autism is a bastard. I wish I could take a vacation day. Yeah, I'm calling in Autism today, maybe some Autism PTO, or a half-day; I'd kill for a half-day. A day when I don't have to say, "oh, he has Autism”, to explain away a strange behavior, or run after him even though he's five, or prompt him to answer a stranger asking him a question because he didn't even realize they spoke to him, or make sure nothing on his plate touches anything else.

I don't want to fight with him to wear mittens when it's 20 degrees, although I know it's because of his sensory issues he can't wear them and not because he's difficult. I don't want to change his jammies 3 times because the top doesn't match the bottom’s pattern exactly or switch socks 12 times until we find a pair that doesn't hurt. I really don't want to hear him repeat his Christmas list 20 times in 3 minutes, and answer my questions with scripting from Cars 2.

But this week Autism sucker punched me: The boy has this, "blanket", or better described as germ-infested-grayed-out-disintegrating-piece-of-"material" that used to resemble a blanket. Somehow it found its way to school. This is not allowed, for I know if blanket was lost, there would be hell to pay. But alas, snuck it into the backpack when I deviated from the morning routine and went to the bathroom. Well, wont' be doing anything foolish like going to bathroom again!  I didn't notice until that evening, and blanket was nowhere to be found.

Me: Dude, where's your blanket?

The boy: At school.

Panic. You know those red lights and sirens, waaaaahhhh, wahhhhhh, Danger, this is an alarm, you are screwed, Mom, good luck and don't dive of the back porch. That's my inner voice panicking; calm on the outside, sweating and hyperventilating on the inside. The boy was playing with matchbox cars; he clearly does not understand that blanket will not magically re-appear... This wasn't going to be good. So here's how it went down:

Me: Okay time for bed.

The boy: I need my bwhanket.

Me: I know buddy, but blankets at school. No blanket tonight, we'll pick it up in the morning.

The boy: NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

I want my bwhanket.

Me: I know, bud. But Mommy can't get it right now, school is closed.

The boy: My bwhanket, my bwanket, Mommy find for me. {Crying}

Okay, so imagine the above 29 different ways. You can explain all you want to a kid with Autism, he just didn't get it. And it didn't help that the blanket is a calming item to him, a stim and a chewy. Screwed. The anxiety quickly escalated, to whimpering, and scripting, him, not me. He didn't stop crying and talking until 2 am. There is no worse feeling as a parent than when your child is melting down and can't stop, and you don't know how to stop it; because reasoning doesn't work. When rocking and hugging only make things worse, when he covers his ears because my quiet voice is hurting him.

I did as much "therapeutically" as I could, but when he is so over-stimulated, only time will bring him down. And only exhaustion can make him sleep. Even with Melatonin.

Luckily, blanket is back, and we are back on schedule.

On these days, I remember Autism, and I curse it for the pain and stress it causes. I lay awake, even though exhausted replaying the meltdown in my head and thinking how I could have handled it differently, and how I will tell his therapists tomorrow. I think about how I should be blogging about this everyday and educating people about this disorder; no epidemic that affects 1 out of 89 children. I think about all these things and wonder if I'm doing too much, or not enough. And I think was there something I did? And then tell myself to go sleep because I know I didn't cause this, but desperately want to understand why, and hate that there is no answer. I think of the parents who will find out their child has Autism today and how they will mourn the loss of the child they once thought they would have.

So on these days, I remember Autism. I look at my son with tears in my eyes for the hurdles he has to overcome and I look with gratitude that he has come so far and our days like this are few and far between. I am thankful that most meltdowns can be managed in minutes not hours, I am thankful he will wear yellow again and shirts with tags, I am thankful that he has words to express himself, where there once were none, I am thankful that he hugs me and says, "I love you, Mommy", because so many parents with these kids will never hear their child say that.

I am grateful that Autism made me slow down and realize how beautiful life's potential is, and how if I didn't stop to notice these small things, I would miss everything.

I am grateful.


16 comments:

  1. I am sorry. 2am is really, really rough on everyone. It was a bad day. It will be better. It's been a little while since I've seen little dude, but last spring when I last saw him, I was thinking the kid was pretty darn typical! And I mean that in the nicest way :-)

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  2. I do not have a child with Autism. My cousin has Autism, and 40 years ago we did not know as much about Autism and how to help those with Autism as we do now (although it is still painfully little) and help was very slow to arrive, so I grew up facing situations as these on a daily basis. She is a non-functioning Autistic woman, she never went to school or participated in a normal family life because she has severe Autism, the crippling kind, the kind that prevents her from participating in pretty much anything. But there is one thing I learned 40 years ago and still stands: the parents of an Autistic child (regardless of how mild or severe Autism that child has) are my heroes. They are the kind of parents we all wish we could be, they deal with difficult situations every day and ALWAYS always always look out for the child's needs, become researchers, therapists, teachers, doctors, nurses, sitters, nutritionists, and every other profession in the world to provide their children with the best environment possible so they can shine. They overcome incredible odds and fight for their child's rights. They have an inexhaustible supply of love and dedication and patience and stamina for that child. It is difficult. It is hard. It is heartbreaking. And it is the single most heroic kind of parenting that any adult can do. And it is all done because of the love we all feel for our children. But yours is a kind of love that leaves us, the parents of "normal" children, in the dust.

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  3. As a mom of a special needs child I hear ya! After seven years with my daughter I no longer think about her disabilities everyday. She is just Zoey with all her uniqueness, but some days it does sucker punch you right in the gut and all the crazy fears and awful feelings come rushing back. Those days suck but thankfully they are few and far between and most days our kiddos are just that are kiddos.

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  4. "I am thankful he will wear yellow again..."

    Now that is just mean. No kid should be forced to dress like a banana. I'm with Gabe on this one.

    Thanks for sharing this story and living out true love.

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  5. Ah...your post made me weepy and then Maria's comment made me weepy. I'm sorry it's been so tough for you guys. Glad you wrote about it and although the blog is your escape, hope you will write about it more often. It not only educates but makes us stop and think about those things that we often take for granted. It is the little things that we sometimes forget to be grateful for.

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  6. @Salt- :) I can't even imagine having 2 kids on the Spectrum, you're pretty amazing! I think our parenting style is similar in that we live our life despite Autism. We won't miss out on things or experiences for our kids, even though they might be harder to accomplish. Never thought I'd love a life that is "boring and normal".

    @Maria- That made me boohoo. Thank you. Being a parent to that kid is amazing, he has taught me more than I could ever teach him. I feel lucky everyday that God picked me to be his Mom.

    It is just amazing the strides Autism research has made in 40 years. Just that many years ago, kids with Autism were not even given a chance in society, and their parents were labeled bad parents. Early intervention makes such a great impact on these kiddos, and we really have only scratched the surface. In my fight for my son to find a cause, a cure, or to heal, I will fight for your cousin.

    @Sara- So true, some days, I just think he is as "normal" as can be...then bam! But I won't let Autism take over his life, or our life. But yeah, sometimes it does...

    @Beard- Good thing boys can wear pastels and pink too. I'm working with primary colors in the color wheel here, there aren't many options. Yeah, those kids are the loves of my life.

    @Christina- She made me bawl too! Tough times make you strong, but sometimes I just can't internalize it all. I am very blessed to have a supportive online community, whether they dabble in Autism or not;) It's human nature to take things for granted until they are gone, it's a necessary lesson we all continually learn. I'm glad there are blogs out there worse than mine, so I don't take this one for granted.

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  7. *Raising my hand* Two kids on the spectrum in my house!! Life is GRAND!!! We've had the leaving-the-favorite-item-at-school event, and I promise, when the child has emerged from the bus without it, I have plopped both kids right in the car and have driven to school to get it.

    I know. I'm not teaching life skills. But, mama's gotta preserve her sanity.

    Cheers!

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  8. Cari and Maria, you both made me weepy. One of my dearest friends has a child with Autism. You guys are AMAZING. God has given you a special depth of love that the rest of us can only envy.

    My youngest does not have Autism but he does have a "special Blanket" that thing is little more than strings and boogers. It smells and I cannot get him to give it up. He has snuck it to school too. He is 9. Don't mess with a boy and his blanket.

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  9. Your post made me cry, Cari...for real...

    I honestly don't know what to say. I think I've said in previous comments that I do admire you for keeping it all together. I wouldn't know what to do if I were in your situation.

    As you've said, you have made progress. Congrats on that. It's good to see your son simply for who he is.

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  10. @Amy-Kudos to you girl. And I also have to say that you have one of the most hilarious blogs out there girl. I love your posts. I've high-tailed it back to school too, but this time I was too late. Sometimes when you have the really, really bad days, it makes you appreciate that the other days that seemed like they were driving you up a wall weren't so bad.

    @Moms- Girl, no. A kid and their lovie is a scared thing. My daughter lost her lovie once when she was one, replaced it easily. But once the silkiness is worn off and the stench sets in, it's all downhill.

    @Pepper-If you were in my situation, you would do exactly what I am doing. Same goes for those who say they don't know how we do it as single parents...we just do, because what is the alternative? We love our kids and will do what is necessary. Thanks girl!

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  11. Man oh man...do I get this moment. I've been there myself, on quite a few nights. And sometimes after all else fails all I can do is let him work it out on his own.

    There are moments when I forget all about autism, moments when it's just a word not a part of our every day lives. I guess that's part of the peace making process.


    And like you, I am grateful, because if it weren't for autism, I would not appreciate all those little things so many parents take for granted. :)

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  12. Well said and I can absolutely relate.

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  13. Wonderful post, Cari. I mean it. Thanks for giving us a glimpse of this moment with your son. I, too, know what it's like.

    Recently I was up with my oldest trying to calm severe nighttime anxiety he has about possibly hearing the sound of the rain hitting the window. And then my youngest (after hearing all of the sobbing and such) got up and I had to do it all over again with him. He doesn't have the same anxiety, but had created it in his mind due to his super keen hearing, echolalia and desire to mimic his older brother. I don't think either kid made it to bed before midnight that night.

    I may have 2 kids with autism, but the fact that you have 1 and do it as a single mama, I cannot even imagine how you stay sane. Kudos to you, my friend. You are definitely a strong woman and a good mama.

    -Angela

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  14. My son is almost 20 and things are getting VERY physical. He is strong, and as a mom I just can't get myself to fight back. I was wondering if any of the mom's on this site have older kids. I've been thru all the younger years when I thought he would always be my "baby". But this adult thing is kicking my ass!

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