I'm Wearing Blue Today for Autism Awareness - Will You Join Me?

Because you know me, you know this is uber long. i can NEVER tell a short story - but I think that all of the details are very important to this tale.

I will never, ever forget the first two years of my daughter's life. The pregnancy was great, the delivery as close to pretty much perfect as one could be. (Hey, by #6 I knew what I liked in a birth and how to get it done.) The first six months of her life were standard. I recently read some entries on my old blog that I kept during this time frame and I remarked, over and over, what an easy baby she was. She slept. She was calm. She was typical.

But shortly after 6 months, things started to shift, slowly but inexorably.

Her sleep patterns changed. We started solid foods and she cried with all of them. It was odd how she also didn't seem to have great muscle tone in her mouth - but she'd had no trouble nursing. But probably the single most jarring trouble was the crabbiness. The kid became so, so irritable. She stopped napping and was not easily consoled. Between the age of 6 and 9 months she became a different baby. But there wasn't anything I could point to, anything that caused this shift. And it wasn't a dramatic shift, but slowly and progressively she became more difficult to console and more irritable.

At 9 months, I told her doctor of these issues.  "She's going to be strong willed," I was told. "You'll have your hands full with her." I've had five kids before her and I worked as a nanny for a family that had 2 kids when I started and 5 when I left. I know a little bit about children. I didn't pursue the issue. Maybe the problem really was me, I thought. (I kept really good notes during this time - seriously, it's amazing - you should see the file I have for this quirky kid.) She didn't sleep. She didn't eat solid foods really at all. We kept on keeping on. I wore her in my sling as much as possible, but the kid just never stopped crying. Not really crying, more like a constant scream. I seriously thought that I was just a shitty parent. I never had these problems with my other kids, but maybe I'd lost my touch. At 12 months, I told the doctor again. She repeated her "strong willed kid" diagnosis.

I don't blame her for that. I adore my doctor and all but one of the doctors in the practice are rock stars in the extreme.

Again at 15 months. Lather, rinse, repeat. I was growing more and more frustrated. And then my husband was awarded his annual trip - and being that Quirky was wee, we took her with us to Mexico. And that trip was a complete and utter nightmare. She screamed the ENTIRE trip. On the plane. Off the plane. I walked at night in the hotel with her, trying desperately to keep her quiet. I took her on the beach and she howled as soon as her feet touched the sand, as if she was being burnt. We took walks outside the resort to keep away from other travelers and their (totally understandable) dirty looks. My husband was pissed at me for bringing her. I spent much of the trip crying while holding this obviously upset baby. The end came in the Mexican airport, when the kids screamed and screamed and threw herself OUT of my arms, and I caught her as she hit the floor. We watched in disbelief as she hit her head on the concrete floor again and again. It was a horrible scene, and going home with a gigantic goose egg on my beautiful girl was mortifying. My husband was furious with me for ruining our getaway, and I cried all the way home, holding this kid was was so obviously miserable and clearly hated me.When we returned home, shortly thereafter it was time for her 18 month check up, and I walked into the room with a purpose. I was at my wit's end.

"Either you fix this kid, or I'm dropping her off somewhere. I can't do this anymore. It's not strong willed, it's not bad parenting - there is something clearly WRONG with this kid. She screams all the time. She never sleeps. She doesn't eat. She won't talk. She won't look at me. She bangs her head. She bites her lips and her cheeks until they bleed. She bites her fingers until they bleed. She picks at her skin. She pulls off all of her clothes. Fix her now, I'm begging you. I can't do it."

She believed me and sent me for a couple of specialist visits.Two months later we had a diagnosis. Sensory Processing Disorder. (Man, reading that page just sent me way back. I seriously got chills.) We were referred for Occupational Therapy - but insurance didn't cover it. So we went self pay - for 2 years. $100 a visit was the cash discount rate, beginning with 3 times a week. At her original assessment, she was 100% grossly delayed in 7 of the 8 areas tested. We did a tour in the sleep clinic. We did some feeding clinic time. We bought therapy aids, we did tons and tons and tons of work at home with Quirky because I couldn't pay for the other sessions that she needed - we'd been recommended to start with 5 a week. We did Wilbarger brushing and joint compression every waking hour. We borrowed a therapeutic listening system and forced it on her. She cried for every minute of every session and was miserable - and for 6 months, I was convinced that this was a stupid idea. We made her do stuff that she hated - dunked her in sand, made her stand on small rocks, forced her to play in shaving cream and blow out candles. We stuck her in play tunnels as she screamed and forced her to find her way out, and held her on swings that she hated. We sent her down slides as she screamed. Rolled pebbles across her hands, stuck her hands in glue and made her pick up spongy balls and gooey messes. We added supplements to her diet - fish oil (Coromega), calcium, liquid multi's recommended that smelled like gross in a bottle. I held her mouth closed and made her swallow.We bought a weight vest and had her wear it, bought different blankets until we found one she tolerated and bundled her to sleep at night. Bribed her to eat just.one.bite of applesauce and had a party when she swallowed it.

It sounds awful - and it was. Part of the therapy, though, is forcing them to do the things that they cannot tolerate in order to break past it. When we left therapy, we were both drenched and exhausted. But at the 6 month assessment, I suddenly realized that she was making progress. She climbed the slide without screaming. No, she wasn't smiling - but she did it. Begrudgingly, but she did it. She started to eat more solid foods. She slept for 3 and then 5 hour stretches.I have the first picture of her smiling inside the play tunnel - my mom took it - framed on my wall.

And at the end of 2 years, she graduated out of the program. (see also: I ran out of money - and we did continue with lots of stuff at home.) I worried about her constantly, for this kind of stuff never goes away. I sent her to day care at the school my kids attended for 4 hours a day when she was 3 - and she tolerated it, but it wasn't good. I had to go to work, and this was the best option - but it wasn't good for her. When she was 4, and turned 5 during the year - she went to full day preschool. She didn't talk to the other kids, spoke to her teacher very minimally until December, and cried every.single.afternoon when I picked her up. Screamed all the way home. Threw her shoes at me while I was driving. By the end of the year, though, she began to come out of her shell. I still worried though, especially as the specialist we'd seen for her check up indicated that he thought she had characteristics of Aspergers. Especially the "no talking to people outside of her family" internal rule she seemed to have created. We still struggled with eye contact and occasional lip and cheek biting. And the tantrum throwing. OH MY GOD, the tantrum throwing.

Which is why this past two months has been AMAZING. She ordered a drink at Starbucks - looking at the clerk IN THE EYES the whole time. She has, all of a sudden, become outgoing and friendly at school with other classmates. She speaks to adults that she doesn't know - not a long conversation, but at least a "hello" or "yes" in answer to a question. She looks people in the eye - sometimes it does take a reminder. On her assessment testing for the Spring of Kindergarten, she scored in the 8th (of 9!!) stanine for concepts and communications. She scored almost 100% on everything. She only missed 1 on the summary of her diagnostic analyses.It was music to my ears to hear her teacher say, "If you hadn't told me that she had a problem, I wouldn't have known at all now."

Most telling of all, the kid who DEMANDED that I not only walk her in to class every single day - and wait while she unpacked, and told me good bye obsessively 100 million times - REQUESTED that I begin to use the drop off line in the morning. The kid who has not wanted to change one.single.solitary.thing about morning drop off since AUGUST has suddenly decided that change is GOOD, let us EMBRACE the change. She sleeps. She eats. She no longer bites her hands or lips or cheeks until they bleed. She cheerfully goes off on weekend excursions with my saint of a mother and has had 2 successful play dates - without me present. I have to be certain that she gets enough to eat and if she's not in bed by 7:30, the rest of us SUFFER.

But she's in a good place. And so am I.

Note: I know that I've been bashed in the past for saying that Quirky Kid isn't TRULY autistic. Different schools of thought have, well, different schools of thought on this. Some say yes, some say no. For my own purposes, I say yes - and also for ease of explanation. For all those times that someone said to me - "What's WRONG with your kid???? - saying that she's on the Autistic Spectrum is the easiest and least intrusive way to explain it.

Comments

[Jenn E]

Even as the mother of a child who is moderately autistic and non verbal, my feeling is no matter where the child falls on the spectrum there are challenges. Do I wish my child was more high functioning? Yes Do I wish he didn't have autism at all? YES! Would I cure him if I could? HELL YES!

This was beautiful and honest post. It resonated with me in so many ways. Thank you for writing it.

[Laura Horner]

It is so illuminating to read how your daughter has progressed, and she could most certainly not have done what she has if she didn't have AWESOME support in her corner. As the mother of a 3 year old boy who is not developmentally challenged, just "stubborn" and "active" there are days I want to bang my head. Repeatedly. Into the nearest wall. So I cannot imagine how you made it through. How did you do it without just walking away from it all? I know, Mothers do what they have to do, and we do. But hats off to you! And to your adorable, Quirky girl as well.

[Tina]

This touches me on so many levels. I'm so happy to hear things are going well. Both my children (mostly my daughter) are dyslexic and even though I've not had to deal with anything like you have it can get discouraging to see them struggle in school (my daughter is 8 and can not read very well).... so when I hear that my son is doing better in school (average) then I just swell with pride. And when my daughter tries so hard and has so many advances and then set backs it can be discouraging because like your daughter this is a life long thing... But I understand your pride on looking back and seeing how far you've come. Thank you for sharing!

[Sarah]

I loved reading this. Thank you so much for sharing--so encouraging!

[Trece]

Dear Carmen, I am so glad that your family is being blessed by these wonderful changes! You have made it through so much, and with apparent grace.
God bless, Trece

[Sue @ Laundry for Six]

The part that REALLY makes me cry is that you had to pay OUT OF POCKET for 3 therapy sessions a week. I could write for days about that, but I won't hijack your comments.

This is a fabulous post and very, very inspiring. Great work on everyone's part!

[Young Wife]

Wow. What a journey. I'm so sorry you blamed yourself! I'm so glad she's doing so well.

[Rox]

I'll be wearing blue, too, thinking of you and yours as well as my sister, who is on the spectrum.

[MB Squared]

I can see a change in her, and I am so happy for all of you.

[Debby Pucci]

Wow, it sounds like she is doing wonderful.
Does she take medication? My daughter who is 28 has OCD & BDD and it can be hell. I pray that your daughter continue to do so well.

[Tricia]

This was such an incredibly brave thing to do: to tell your story true and real and honest. I can't tell you how in awe I am of you. I mean, I was before because let's face it, you've got 6 kids. I would LOVE to have six babes, and maybe I'll be blessed with 6. But you are a supermom! I think of you now not only as a supermom, but an amazing superWOMAN. Thank you for this, Carmen. You are truly an inspiration.

[Karen (from Our Deer Baby)]

Big {{{ HUGS }}}

I have two kids on the spectrum and although one of them is doing as well as yours, the other one isn't at all. Your emotions and your story really resonate with me. And yes, there is always the 'oh, she is just strong willed' or the 'you must be doing it wrong, or maybe you just have too many kids to pay enough attention to her' stupid reasoning which crops up more often than it should.

You are doing a great job with this kid and your hard work when she was younger really seems to be paying off now. Kudos!!

Karen

[Starr]

This whole post made me cry, Carmen. The first part because of all you and your daughter went through, and the second part because of how incredibly far she's come. I feel like jumping up and down and cheering my lungs out!

And I'm wearing blue today. :)

[Jodi]

As a mother of a child who has "issues" (as I call them) of her own (not autistic though) I was crying at the results of all the hard work you and she have put in.

It is so worth it in the end isn't it?

Congrats to you both!

[UKCraftySal]

Oh Carmen, well done. You have worked miracles from the sound of it. I can only begin to imagine how painful it was; thank you for sharing your story. I'm so happy to hear the huge amount of progress your quirky girl has made, and continues to make. Love to you both.

[Iowamom]

I'm so glad that you and her are in a good place. Happy Easter!

[Stimey]

This was a great post. I don't think I'd ever heard her whole story before. And how wonderful that she's in such a good place. I hope it keeps on! :)

[Cheryl]

A friend recommended your blog to me just for this entry. We are in the process of having our 7-year-old daughter evaluated for Asperger's. So much of what you wrote rang true for us. I love that you call her Quirky. That's how I describe my daughter, too. So much of her is "right," but then there's the quirks. Thank you for an honest discussion of the road you and your daughter are on. It gives hope to those of us who are following right behind. :)

[Kari]

So glad things have improved - but WHOA, did reading the parts about Quirky's earlier life really take me back, too.

I am so relieved that my own quirky kid is doing so well these days, and glad that the same has happened with yours.

It is amazing how much can change in a few years, even if we would never believe it when we're in the thick of it, particularly as we are being beaten down by others for "obviously" not knowing how to parent.

Hooray for your hard work, and for Quirky's recent "growth spurts!"

[Beth Bullock]

Carmen,
I teach pediatric occupational therapy. Next week i will be teaching sensory integration. May I have your permission to share this post with my college students? I think it's a great perspective for future therapists to read.
Beth Bullock
Adjunct Faculty
Cuyahoga Community College
Cleveland, Ohio
bethbullock@ameritech.net