I've got some work deadlines I've set for myself that I need to meet, and I've dedicated today to that.
I've had the kids home for the past 4 days because they had a school-holiday on Friday, and the oldest and youngest were sick yesterday. Everybody's now bundled off somewhere or quietly occupied, so I should be able to have a productive day today.
But before I settle down to work, I owe you an update on how we're settling down to business on the home front. Again, thanks to all you wonderful wonderful fellow bloggers who have sent me links to resources and notes to lift my spirits. The words "they really helped" just do not capture it.
So here's where we are. We had that appointment to see the specialist - the psychologist last Thursday. I did really try to find another way through public healthcare and through the church. But the doors there just didn't seem to be opening. Yet? We'll see. One therapist working through the church asked me "Who what syndrome?", and "What syndrome?", then took my number, and never called back. Needless to say, I'm not feeling a lot of faith there, so I haven't called back either.
The psychologist was awesome. She obviously has a lot of experience dealing with this, and she has a room setup that was like a wonderland to my son. He was SO excited. I had to explain to her that he was not in his usual form. First of all, he was hyper all day, excited to go see the lady who would help us with "why he's so sad". He must have overheard my husband and I talking about it, and came right out and asked me. I wasn't sure how he'd react, but I told him yes anyway, and I think he was actually relieved. Hence hyper-excitement on the day of the appointment.
Anyway, she saw several obvious (to her, not to me) physical signs of sensory disorder right off the bat, like the way he sits, and moves. His speech she felt sounded as though he was translating back to English from another language and she wondered if that was normal. I guess we've gotten used to it, and we don't notice it anymore. She explained so much - like why he always wants to wear long sleeves and long pants, even in this heat! And why he always wears a belt, and things that we always thought were just his quirks. So now we know. He has a sensory disorder, and the suspicion is Aspergers.
She told me she could see where I had done a lot of work with him, and I felt so happy that a professional was basically confirming that I'm not a madwoman. Lol. She has shown me that my willingness to be so flexible with him has allowed him to develop trust and communication skills, but it has also allowed him to remain very rigid. So we're going to work on that.
When she explained to me how his sensory system works, despite the validation she had just given me, I still felt like I had so much staring me in the face that I missed.
- Why he constantly has the remote in his hand when watching TV. He flips to the TV Schedule every 5 mins to check what's coming next, and how much longer. And I would lose my temper and take the remote away. Now I know that he needs to rely on a structure and he needs to know what's next. Slaps forehead. Doh.
- Why when he asks you to confirm something and you explain that's not right, and then he says "I know, I was just joking!". It's a coping mechanism... On Sunday it was a neighbour's birthday. He asked when is your birthday. But what he meant was, what DAY is your birthday. Or how we would ask is, what day is Today. When the neighbour answered, you know today is my birthday. He gave the standard "I know, I was just joking. What day in October is it today?" Oh lil man, I can only imagine how hard these things we take for granted are for you...
- That I'm not going deaf, your hearing really is that sensitive!
- Why when you say something is irritating your skin, it really is. I'm sorry for all those times when I just sent you in the shower, and then if that didn't work left you to suffer through it.
- Why phonetics drove you crazy and you would memorize your words. I'm glad you stuck it out and now you're comfortable in your rules. I'm going to learn how to reach you better to make that journey less stressful for us both.
The list goes on and on. And so do we. We move on.
We need to get him to a speech therapist and occupational therapist next to be assessed. Then we're confirming the diagnosis and charting a course of action. I've caught myself, gotten off the emotional roller-coaster, and am ready for action.
Aside from the work we'll be doing with the therapist, I'm going to start a separate blog to keep as a journal of our journey. Hopefully this will be helpful to other parents who are wondering about their children and Aspergers. There were so many revelations I had once I finally got in touch with other people who have experience with this. I will let you guys know when it's up and running.
Ok before I go, have you heard about Motherhood - the movie starring Uma Thurman as a SAHM blogger? It opens October 23rd in select theaters. Can you do 2 things for me?
1. If you're on Twitter, please follow @Motherhood for updates, giveaways and news. She needs 12 more followers to get to 2000!
2. Check out this write-up on the movie and go see it if it's coming to your city (LA, San Francisco, Chicago, Boston, NY) on October 23rd.
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8 comments:
I'm glad you're getting an understanding for your son's quirks and that now they make sense. I think I mentioned this, but for years I thought my sister was a bad parent to my nephew. She was so harsh with him. He seemed to have so many little issues. Once she received the diagnosis of Asperger's, everything made SENSE and I realized it wasn't about her parenting skills. She was frustrated. Now it's all in place and my nephew is flourishing.
Hugs!
I'm so glad you are getting some aswers and are finally able to understand this all better. What a sigh of relief for you. I hope things only continue to get better for your family. :)
I am at work and I'm crying. I can not express how I feel. I am so happy you are getting help and I am so thrilled that your child has you as a mother. I'm sending you love.
I hope the doctors can get oto the bottom of it!!
My cousin has Aspergers (he's 15 now) and though it hasn't been easy on his parents, having regular visits with therapists and psychologists have helped tremendously. I hope you and your son get the help you need. It must be such a relief just to have some answers.
You sound like such a diligent, wonderful mama!
I'm so happy that you've found a psychologist that seems to know what's going on. It makes me so sad to think of little guys who feel sad all the time, that's heartbreaking and I really hope this helps you guys. It sounds like it's going to.
He's lucky to have you. Keep us posted. Sending my good vibes your way!
It's a start and a step and perhaps a new beginning. I'm so glad she seemed to shed a lot of light on this!
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