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My Oldest: Over the Years Part 2

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Tuesday, June 7, 2011

My Oldest: Over the Years Part 2

I realize my posts about my son are all over the place lately. At least I feel like they are. I've probably written about the same things more than once, or left something out, but that's pretty much what's going on in my brain, so that's what comes out in my posts.

Due to alarming OCD behavior triggered by extreme anxiety over this move, we have a monster of a task ahead of us! We finally have a diagnosis that makes sense. My son has Asperger's Syndrome and Sensory Integration Dysfunction. He is a high-functioning autistic child.

I cannot express how good it feels to say that! I've known in my heart for years, and I could never get anyone to agree with me-until now! I told my husband, I've never been so happy to get bad news.

The struggles over the last few weeks have left me in a place of reflection. I have just been trying to make sense of things we missed. Looking back I see so much that wasn't really missed by us, but things that didn't make sense to us. I've had a hard time excepting the fact that he did not get the early intervention he needed. I think I'm carrying a lot of guilt over this.

In my head I know we did everything we could. In my heart I wish I had fought harder to get the right answers. I have to move forward, but perhaps just getting out the past a little will help me feel better about the future.

You can read Part 1 HERE. Sorry, if you've read some of this before. Rethinking things is the story of my life right now. I guess it's only natural that I might rewrite something.

3rd grade: Same problems. They just looked different. His lack of social skills was becoming more apparent. As the kids got older they started to form friendships, get invited to sleepovers, birthday parties, and so forth. I started to see that my son wasn't invited. He wasn't making those connections. He only talked to the people geographically around him. For example, whoever he sat next to at lunch or in the classroom. He didn't make an effort beyond that. He took the state standardized test for the first time and received a perfect score math. The kid Who does that? Most parents would be thrilled over a high score. I wasn't. I was proud, don't get me wrong. But, my heart hurt. I kept thinking, "What must be going on inside his mind?" The perfect score left me sad. He was so misunderstood by me. By everyone. His reading score was well above average too. He got straight A's. Yet, he was always in trouble for something. Then at the end of the year, he had a meltdown so bad, he locked himself in the class bathroom. Sigh...poor baby. He was never able to tell me why he was upset.

4th grade: All of the same issues, grades were always above average, test scores were off the charts...conference after conference...nothing ever made sense. He stayed in trouble at school, we tried to discipline at home. Something  was off though?! He was a great kid! He wasn't bad. I mean, he clearly wanted to do the things that were expected of him. He didn't have a bad attitude. He just couldn't get it together. We stayed frustrated. He stayed frustrated. When they had recess, he would never play. Every day they went out, the other kids ran and played. He stood by the fence. Every time, without fail, he would ask his teacher the same question..."What should I do?" She would just look at him confused, look at the other kids, and look back at him and say, "Go play, sweetheart."

But he never did.

Then one day in a conference she mentioned the term Asperger's Syndrome. She said, "I'm not sure if that's what it's called or not? Google it." So I did.

What I found after researching online was that I believed without a shadow of doubt that my son suffered from this. We decided to seek professional opinions and get some answers, and we decided to homeschool. That was the summer before 5th grade.

After spending an entire summer that year meeting with doctors and psychiatrists, we were told that our son has ADHD. Period. That Asperger's was the new "hot topic" (one doctor actually told me that) and we "didn't want to get carried away or jump on the band wagon." So...we decided to try ADHD medicine. It DID NOT HELP. It made everything worse. We didn't know what to do, but this was clearly not the answer. We decided to continue homeschooling and just work through this on our own. We gave up on doctors and psychiatrists. We decided to put all of our efforst into trying to make homeschool a positive experiience for him, and I think it has been!

But, almost two years later I began to doubt if I was giving him everything he needed. I shared that I still believed in my heart we were missing something, but that I was scared to seek out professional help and get nowhere like we had in the past. But, we did and thank God for that! What we got was a new direction.

We finally have some answers that make sense, and they couldn't be coming at a better time.

He will begin his 7th grade year in the fall. I can't believe the time has gone so fast.

He's my baby, yet he's a young man now.  A young man that needs help finding his way in this world.

I am praying that God will euip me to help make this the first amazing year my son has ever had.

He deserves it!

I've linked this post up with Shell at Things I Can't Say. She pours a tall glass of free therapy every Wednesday!

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At June 7, 2011 at 11:44 PM , Blogger Mandy said...

My thought is that it is wonderful to get a diagnosis. Power comes with knowledge, and the coming year can't be anything but your son's best year yet!

At June 8, 2011 at 7:41 AM , Blogger Halie said...

I know that the feelings of guilt will be there for quite a while, but I also know that your son would tell you to not feel that way. Every thing that happens is for a reason. And maybe the reason for all those things that happened in the past is for you to be more prepared for what came.

Blessings on your young man and your family.

At June 8, 2011 at 8:24 AM , Blogger Katina said...

You go girl for being an advocate for your child. Mommy gulit can get the best of us but you are doing what you can NOW and now is all you have!

At June 8, 2011 at 9:18 AM , Blogger Renee said...

Being the best advocate for your child is a never ending sounds like you are succeeding with flying colors!

At June 8, 2011 at 9:25 AM , Blogger Kate said...

Good for you for not accepting a wrong diagnosis and for standing up for your son! You go Mama!! I am praying for your son as well, you both deserve a positive, enriching, excellent year.

At June 8, 2011 at 10:00 AM , Blogger EMM said...

I am so glad that you have found some answers that make sense! I have to say, the teacher that mentioned Asperger's to you took a major leap of faith that she was right and that you would be open to her suggestion. In SC, at least, if we (public school teachers) in any way mentioned some kind of medical issue, be it ADD, ADHD, Asperger's, etc...we're talking potential for a major problem. You are doing the right things for your child- keep up the good work, Mama!

At June 8, 2011 at 11:18 AM , Blogger Shell said...

It's such a shame that doctors were so unwilling to go with this diagnosis earlier, but since they were saying no, it's not like there was anything you could do.

At June 8, 2011 at 1:31 PM , Blogger Nicolette said...

I think it's great that you keep seeking answers. Many parents, out of fear, only hear what they want to hear. It's not easy hearing that your child will need extra or more help then other children but it sounds like you are handling his needs the best way you can. He is lucky to have you!

At June 8, 2011 at 1:32 PM , Blogger Sara said...

You have so much more knowledge and information now, I know that he is going to have a great year. You are an AMAZING mom, and he is so lucky to have such a strong advocate for him and the things that he needs. There isn't anything to feel guilty about- we're not always meant to know things until God wants to reveal them to us. You just have to trust that this "late" diagnosis is part of His plan for you and your son!!

At June 8, 2011 at 5:01 PM , Blogger Sandra said...

As a parent, you just always want the best for (and sometimes for bettor or worse, the best FROM) your child and it sounds like you felt like you were missing both of those marks for such a long time (I don't mean you weren't getting the best from him, just not what you were expecting?) Now that you know what you're facing (I'm sure it's such a relief), you're probably rearranging your goals for him and may learn how to better deal with those tough situations. It's bound to get better for both him and you.
Thanks for sharing your heart! Lifting your family up in prayer today!

At June 8, 2011 at 5:48 PM , Anonymous Melanie said...

Wow, wow, wow, wow. I'm close to tears reading this. My son has had a "socially-awkward" year in Kindergarten so I can relate to a bit of what you're feeling.

It sounds like it's been a tough road but there seems to be light at the end of the tunnel, and that is awesome. You're an encouraging example of love and perseverance for this Mom.

Visiting from PYHO. So glad I stopped by!

At June 8, 2011 at 10:43 PM , Blogger Heather H said...

I'm so glad you were finally able to get a proper diagnosis. It's so frustrating to know in your gut what is wrong but not be able to convince a doctor of it. Good for you for continuing to push and advocate for your son!

At June 9, 2011 at 2:26 AM , Blogger Sarah said...

I'm so glad that you got a diagnosis. I have a friend who had to fight to get a diagnosis for her frustrates me to hear this. As a medical professional, it angers me too. I'm just glad that you trusted your gut and stayed with it until you got your answer. As for your son, I'm glad he has a mom that cares enough to stick it out and find out what's going on. That makes you awesome!

At June 9, 2011 at 11:26 AM , Blogger Jen said...

LOVE this. Love that you fought for your boy. Love that you believed yourself. Love that you know what to do know. Love that you are standing behind that beautiful boy! If you haven't heard it yet are one fantastic Mama!

At June 9, 2011 at 2:51 PM , Blogger Tiffany said...

I'm glad that you have a diagnosis and now can continue in the right direction for your son. It's frustrating when you know something isn't right with your child and no is listening. Good for you for continuing on to find the right path and doctors to help. I've said it before and I'll say it again, you are an amazing mom. You're son is blessed to have you in his corner.

At June 11, 2011 at 9:23 PM , Blogger Kim said...

You went through such a long period of time in the dark it seems. It hurts my heart that you knew something and couldn't find the confirmation. It said it all when you were not overly thrilled about the perfect grades in math. The depth of your love for your beautiful boy is beyond words.


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