Saturday, January 19, 2013

Sensory Processing Disorder

I haven't been blogging much lately... partly because I'm lazy and partly because I'm in a different place in my life, but mostly because I've been avoiding writing this post.

I struggle with how much to talk about this, because it's Michael's story and he deserves some privacy on this topic, but it's my story too to some extent and I think there are readers out there that would benefit from hearing it.

Something has always seemed off about Michael. He's smart and happy and people tell me he's a great kid and I must be the crazy one for thinking something was wrong with him, but I still couldn't let that feeling slide.

That feeling caused me so much trouble. Was I an inadequate mother? Everyone told me how wonderful he was, so surely that must mean that I'm crazy. And why can't my kid get this stuff?! Everyone else's kid does! I know I'm not suppose to compare my son to others, but still, why? What's wrong with him me?

Although I was incredibly happy when Michael was born, it wasn't long until I started feeling depressed and frustrated. Why doesn't my newborn sleep? Why won't my baby take a bottle? Did I ruin him by breastfeeding him? Why does he scream every time we're travel in the car? Why does he hate his baby swing? Why does he have to be swaddled to sleep? Did I ruin him by swaddling him? Why won't he let me wear him? Why won't he stop wiggling? Why does he puke when I try to make him eat solids? Why won't he stop hitting/pinching/poking me? Why?  Why? Why! Michael really defied most of my expectations about parenthood. He wasn't like the other babies and I  was constantly wondering what I did wrong. It really brought out a lot of insecurities in me.

The other thing about him was that he really wasn't a happy baby. He hated daycare and everyday was such a nightmare. When I picked him up and I should have been happy to be reunited with him, but instead my heart broke because I could see how hard the day had been on him. Big purple bags under his eyes, tears dried to his cheeks.  I'd strap him in his carseat and listen to him wail all the way home. Then I take him to his room and nurse him and we would both fall asleep. Neither of us even able to wake for dinner. I struggled so much and I was so ready to leave my job when it ended because I could see that it was the right thing to do for him. I was totally blindsided by a child that hated daycare. I never expected that. Didn't my baby get the message, these days most moms work.  I didn't finish my masters to be a SAHM. I often blamed his problems on the daycare staffing issues but I've come to realize that the same situation probably would have happened anywhere.

Michael and I continued to struggle. I continued to always feel that something was off about him, but I didn't know what it was. I kept coming back to autism, but that didn't seem right. Then one day a friend of mine, while talking about another child, mentioned sensory processing disorder (SPD). I had never heard of that before so I went home and googled it. Bingo. (And in case you were wondering, there is a wide range of the manifestations of SPDs and the extent to which they impact someone's life... cause almost everyone can relate to some aspect of an SPD.)

I tried respond to this new information calmly. I collected information. Read books. Talked to my Parents-As-Teachers educator (she agreed with me). Prepared some documentation and took it to the pediatrician. He agreed as well (after we ruled out more serious illnesses that could explain some of the symptoms). He made some recommendations for getting Michael fully assessed and occupational therapy.

The story gets more complicated from there, involving early intervention and red tape and medical records  and the school system and insurance and lots of other bits and pieces. We are still very much mid-process in terms of getting him fully assessed and figuring out what services are available to us. I really wanted to wait until that was all done to write this post, but I can see that's not really necessary and I'm not exactly sure where "done" is.

We've had several visits from a wonderful occupational therapist. It's been a real learning experience seeing her work with him and I'm glad that I listened to my gut. When he turns 3 in a few days, we will have to get a new OT because he will have aged out of the early intervention program and I'm not exactly sure how things will go from here, but working with her for the last couple of weeks has helped me to realize how much he needs this.

I still have to come to terms with the feelings of inadequacy that were a product of how Michael's SPD affected our relationship. I know I'm not crazy for noticing this stuff anymore, but at the same time, there is the scarier prospect that his issues are REAL and not created by the anxiety in my head. And who knows what caused his SPD... looking back I could literally see the signs of this issue while he was still in the womb. I'm not going to blame myself for ruining him somehow. I'm going to stop beating myself up for feeling like I should have been able to manage work with caring for my child better. We got dealt a different hand and we're going to play it the best we can.

I'm very happy that this is hopefully a minor issue in his life and that otherwise, Michael is healthy. And I'm  certainly glad that we identified this so early.

Maybe I'll blog about this again sometime, but for now, I wanted to get this out there for the other parents that can relate. Go with your gut. You know your kid better than anyone else. I was pretty much my son's only advocate on this issue. My husband wasn't even observant enough to see what I was seeing and disagreed with me at first, but I pushed against him for this and I'm glad I did.


Rachel said...

I am so glad that you were tuned in enough to notice Michael's struggles, and strong enough to get help. Hoping the process is not too burdensome as you battle the bureaucracy (I spent 5 hours on the phone trying to move a doctor's appt this week ... these things are truly draining even when they shouldn't be).

Stephanie said...

Way to go, Mom! How awesome that you were paying attention enough to know that something was up. I just hate that you had to go through all of that self doubt before seeking help. :-(
Praying for you as you embark on this journey!

Retro Girl said...

Reading this reminded me so much of our son Isaac and myself and my thoughts/feelings as I navigated my way as a new mom. We adopted Isaac at 10 months old from S. Korea, and he was finally diagnosed with SPD at age 3. It took awhile for my husband to fully understand that this was something very real and why Isaac and I both were really struggling. He was also diagnosed with ADHD on top of the SPD at age 4 and has gone to OT off and on an dew continue to work at this. I can say there are times it gets harder and definitely times it gets better as they grow. It's definitely something that you have to adjust to, and throw out any pre-conceived expectations ad just do what is best for your child and your family.

Jess @ said...

*hugs* I'm glad you know what the cause is and are able to seek help now.

Kate said...

You're a smart Mom and Michael's lucky to have you. Hope the services all get sorted out soon so that he can get as much help as possible with this.