In the Beginning (part one of our journey with Asperger’s)
So how did all of this start?
Back in late October/early November 2009, Z was attending a three-day-a-week, half-day preschool, partly because I thought he needed more interaction with other kids but mostly because I really needed a break during the week. I had been a SAHM for over a year with a difficult baby (S) and an even more difficult toddler (Z). I desperately wanted to go back to work and was finding it difficult to find a job (thank you, economic downturn).
And then, it happened. I got an offer for a director position that was an amazing fit. It was a quick transition; they called me on a Monday and my first day was the following Monday. Luckily I had everything teed up in terms of full-time child care and I quickly rearranged our lives so I could start immediately.
The Beginning came while I was on my way to the office for the first time the Friday before my start date. Z’s preschool was having their parent/teacher meetings and even though he wasn’t going to continue going to that school I decided it would be great to get some outside feedback on how he was doing. I figured I’d stop by, meet with his teachers for 10 minutes and then head to the office to bring cupcakes to the team, introduce myself and fill out some paperwork.
Nothing they told me in that meeting was a surprise. Z didn’t like being around other kids. He didn’t like getting dirty. He didn’t like wearing hats. He took inappropriate risks on the playground. He was defiant. Well, yeah, sure. That’s Z. He’s an independent little guy who loves to run, just like his Daddy. And he’s a helluva terrible two. What did surprise me was that all of these things were warning signs of potential sensory issues. The teachers suggested I contact Project Enlightenment to set up an evaluation and to read the “Out of Sync Child.” Out of Sync? Who the hell are you to call my kid out of sync? And what the hell is Sensory Processing Disorder?
I left the parent/teacher meeting numb and a little shell-shocked. On my way to the office, I called J and told him what they had said. Both of us were (to say the least) a little perplexed and unsettled. BUT, I had to put my game face on and walk into my new office fired up to meet them and ready to take on the world.
Looking back I find it ironic that at the same time my “MBA” life gets back on track, my “MOM” life gets derailed.
Next time: Hurry Up and Wait (part 2 of our journey with Asperger’s). In case you missed Rebecca’s first post, I Know How I’m Going to Die.
Rebecca lives in Denver, CO where she spends her days wrangling 2 kids, a dog and a husband, working part time and enjoying Colorado as much as possible. She even manages to eek out some time to write in her blog, MBA Mommy where she talks about…you guessed it….wrangling 2 kids, a dog and a husband, working part time and enjoying Colorado as much as possible! Photo
I think I know where this story is going. My son has the same diagnosis. Funny, I was just talking today to a friend of mine about the past four years of coping with this as our SPD diagnosis turned to “bipolar” turned to Asperger’s. She worked with me as I was in the thick of daily phone calls from preschool, nuclear meltdowns through kindergarten, me running out of the office to pick him up because they couldn’t calm him down after a kid bumped into him and he was screaming that the kid “punched” him. He was “a runner,” which really freaked them out.
He’s doing a lot better now but not without years and tens of thousands of dollars of therapy and me cutting back to part-time work (I’m full-time again and my husband has the flex job now).
At first, I was heartbroken. I kept thinking cancer would be better because at least you can treat cancer and there’s a good chance it will get better and go away. My marriage suffered, but we’re more of a team now than ever and I think we’re stronger for it. I have now learned to appreciate my son for who his is. He’s going to be a brilliant engineer someday.
Mainly, I’m thankful he’s high functioning. There are parents who have children that can’t speak. There are parents that have to quit their jobs forever. There are kids that die from cancer. I’ve also learned to take life one day at a time. Good days are celebrated and on bad days, I remind myself that tomorrow is another day.
Marie, you and I are definitely on the same page. Ironically, I just heard from Z’s OT that she doesn’t agree with the Asperger’s diagnosis. She thinks it’s *just* SPD. What a roller coaster. As soon as you get your head around one thing, they throw you a curveball. We’ve been in it for almost 2 years….so based on your experiences, I can expect at least 2 more labels, right?! LOL.
Thanks so much for commenting!
Have a close friend that has been dealing with this issue. My son, although doesn’t have this issue, was diagnosed with a stutter and we began the roller coaster ride to get him help. It’s hard to swallow when someone tells you your perfect child, isn’t perfect! He was our first child and it made me wake up to realize the expectation we set for him was completely unrealistic. Now we have three little ones and that diagnoses has let me love and laugh a lot more.
When Children’s Hospital diagnosed my son with incurable Eosinophilic Esophagitis at 19 months, I cried so hard. I was devastated. But on the other hand, I was relieved because I knew something was wrong with him and we finally knew what it was. His regular pediatrician thought I was overreacting with his symptoms but I KNEW something was seriously wrong with him, so I took him to Children’s. It was like I wanted them to find something but I didn’t want them to find something all at the same time. And when I got the diagnosis, I cried like a baby (at work!!). Although it’s incurable, at least now I know how to manage it and I’ve found a great support group.
Thanks for sharing! I think many parents have gone through months and even years of symptoms. To find an answer (even a bad one) has at least some relief because, like you said, support is there. How old is he now?
He’s 4 now and is a happy little guy. We have a great team of doctors at Children’s and they have done a great job stabilizing him. I look at the day he was diagnosed as a blessing in disguise because although it’s hard to hear that your child has an incurable and rare disorder, I could exhale a tad because I knew the diagnosis meant that we could finally tackle his health issues head on. Actually the hardest part was dealing with extended family and having them accept the diagnosis. But the support of the other families affected with the same disease have helped tremendously because they actually understand my fears, my hopes, my struggles, and my happiness.
Children’s diagnosed my 3rd son w/ liver disease. He’s on the transplant list waiting. Breaks my heart, the wirst thing to ever experience is your baby wasting away.
Oh Stephanie, my heart goes out to you and your little guy. I really really hope he gets a transplant soon. xoxoxo
Cher, we had the same experience. I was taking my son to his pediatrician weekly for over 2 months telling them something was wrong (he only weighed 8 pounds at 2 months) and they said over and over that he’s fine and just a lil guy. We went for a second opinion and were immeaditely rushed to the hospital where we stayed for 2 weeks. Gotta always trust the mommy gut!