Yesterday, I wrote about my son, Thom, and the story of his birth.

The first three years after he was born, starting at five months old, he was in early intervention. Because of his stroke, we were told, he had developmental delays. He didn't talk when he was supposed to but we had known he may not ever talk. But he learned sign language.

He started walking at 9 months before he even ever crawled.

He was potty trained at 10 months-something he did himself because he didn't like cloth diapers (he was allergic to aloe so disposable diapers were out).

He did have right-sided weakness for years and to some degree even still today at age 12.

At three years old, he began to finally talk. He talked in full sentences giving me the suspicions that he could have talked sooner if he had really wanted to. Guess he just didn't have anything to say out loud.

But he did communicate. He'd share books with me and point at the pictures and sign the events going on. He had no interest in the words of the books--just the pictures.

He'd draw pictures; he'd look at pictures; he'd go on the computer. By age 3, he knew more about operating the computer than I did!

Around this time my cousin Diana had come over to visit and we were sitting at my kitchen table, talking and catching up as I hadn't seen her in awhile. Thom came up to us and asked me "Did it hurt?" And I asked, shocked, "Did what hurt?" He replied, "When the doctor made you a girl?" I blinked a few times and then said "No, honey, I was born a girl." And he blithely informed us that when he was older he was going to become a girl and then walked away. This was the second time he had spoken verbally.

He's since changed his mind about being a girl when he grows up.

It is during this same time span that his biological father left the state with another woman. He'd be gone for four years before he returned. He had another child with the woman. And from all appearances, he did not care about how his kids were doing because during this time, he wouldn't call or write or even email his son. Thom took that very hard. Very, very, hard.

I walked into his room one day because he had gotten quiet. He had gone to his room because he needed to calm down as he had begun these fits that could only be called rages. I sent him to his room to calm down because it was a safe place for him to throw himself to the ground, scream, kick out, etc. while I racked my brain for how to teach him how to deal with these emotions that seemed so overwhelming.

This particular day though he had gotten quiet rather quickly and so I went to check on him. I walked into the room and found the sleeves of his sweatshirt wrapped around his neck and Thom was pulling tightly, trying to strangle himself. At this tender age, he had decided it would be best if he was dead.

This is when Thomas started seeing a psychiatrist and therapist. They'd tried to force medications on him but to me, he was just too young. He needed coping skills. And that is what I advocated for.

He was diagnosed with bipolar disorder type III (mixed bipolar). My eldest sister also has bipolar disorder so I wasn't unfamiliar with its effects. There are other family members with this disorder as well. To me, though, it just didn't set well with me. I didn't agree that was his problem or maybe it wasn't his only problem. I could be wrong though, I thought.

The next few years were spent teaching Thom had to express his anger, disappointment, and depression without the raging fits. He'd throw full-size wooden dressers across the room like a toy. He has always been a big boy. He's now 5'5" and 180 lbs. At age 12.

The fits stopped but not the problems. Thom didn't make friends easily and that was part of the problem. He was extremely lonely. He wanted friends but no one seemed to want to be friends with him.

At his school when he was six years old, the policy was that if a child wanted to give out invitations to a party, they had to give out invitations to all the children. Thomas was so excited he was finally invited to someone else's party. When I called to confirm that Thom was going, the mom informed me that the party had to be canceled. I expressed my disappointment and wished them a better day.

Thomas went to school the following Monday and all the kids were talking about the party. Turns out the party wasn't canceled--just Thom's invitation.

He would come home with tales of woe--of being bullied, harassed. I'd troop up to the school or call the bus barn and speak to the bus driver. I'd demand satisfaction every time for my son. Turns out though, Thom usually did or said something to provoke the incident. I couldn't understand why Thom would say things or do things and then expect the kids to be his friends?!?!

When he was ten, we were living in Sallisaw, OK. He began to make friends. He kept those friends too--until they moved away usually. They move around a lot down here. The school here decided he needed new psychological testing and educational testing. I said fine. His prior testing from MA wasn't too clear they said.

You see, his past testing indicated that he had all of these: bipolar disorder, Oppositional Defiance Disorder, Attention Deficit Disorder, and post-traumatic stress disorder and a few more besides. Their school psychologist, who had studied and treated autism for 30 years at that point, suggested that maybe Thom's problems were a little less complicated.

He gave Thom the questionnaires, and did interviews with him and me. He was of the opinion that all of Thom's issues could be explained with the label of Asperger's Syndrome, a type of autism. Of course, I knew about that one. *I* have Asperger's Syndrome. My youngest son has another kind of autism called PDD/NOS. I had asked the neuropsych who diagnosed me if Thom could have a form of autism and I had been told then that the answer was no and here this doctor was telling me that it explains it all.

I hadn't studied Asperger's Syndrome. I just knew how it affected ME. And I'm a female. It's quite different in males. I had studied autism in general and PDD/NOS specifically because of my youngest son. So I learned and studied more about Asperger's Syndrome. I had Thom tested again by a neuropsychologist to determine a differential diagnosis. He said it was Asperger's Syndrome AND bipolar disorder.

Well, to me, it doesn't matter what the insurance companies want to call it. Now that I have learned much more about autism, I see that he does have it and he does have bipolar disorder. His depression comes on quite strong and it is usually triggered by his lack of social skills, from the Asperger's.

In August of 2005, Thom has a febral seizure that nearly took his life. I called his father once Thom was out of the hospital and home and told him in no uncertain terms he needed to pull his head out of his butt and get home and be a father to these kids. The whole point of his leaving us was because he couldn't handle the responsibility of being a father and husband and here he was a father again with his girlfriend (we never divorced). So, if that's the case, he can be a father to all three back here.

I told him he almost lost the chance to "make it up" to Thom the way he kept saying he wanted to do. Thomas' seizure was that bad. He was unconscious for about 24 hours.... on a ventilator. It was a scary time and I was angry that I had to go through that without the benefit of his father being there. I was quite resentful about it, frankly. I wanted Thom to have his father there with him because Thom wanted his father there.

So, by October of 2005, Thom's father returned to the state. He began visiting his children every weekend. Life was not good for this man though and he had no job and then his girlfriend kicked him out and so he was homeless. He still worked at a temp agency and would come every Saturday to our house for his visits. Rain or shine. For those that do not know this man, for my then-husband to take PUBLIC TRANSPORTATION, in the rain, ANYWHERE, was a huge step in growing up!

In May of 2006, when Thom was eight years old, his biological father committed suicide by stepping in front  of a high speed train. He had left a note on our computer that I did not find until afterward when I went looking for one. He had done the same thing to his girlfriend. This was on a Friday night, a holiday. The previous Tuesday, his girlfriend (then ex) had tried taking him to the ER to have him committed but he lied about being suicidal. He told them he was only saying that for attention. So they had to let him go.

Thom was quite afraid for a long time of trains after that. More than afraid--terrified. Not too hard to understand. He had been told his father was hit by a train, but not that it was on purpose, and now he was afraid *I* would be hit by a train or he would. Someone (not naming names) thought it best that Thom understood that it was on purpose that his father died. That way he'd understand that it was highly unlikely that I would be hit by a train or anyone else he knew.

And so now Thom is of the opinion that a permanent solution is an answer to a temporary problem. He'd had these tendencies before but in his mind, he now has permission because his biological father had done it. The past four years have been hell on this boy emotionally and mentally and I'm glad to say that while he has moments still... he has grown past that part.

During his most depressive states, Thom would often have visual and auditory hallucinations. I think this is why doctors used to confuse autism with schizophrenia. One such night, Thom was about five years old and I woke up to his screaming as if he had been murdered.

I followed the sounds of his screams to the living room and there he was curled up on the floor screaming. I grabbed him up in my arms and sat on the floor rocking him. He was nashing at his eyes, screaming, "Make it go away, Make him go away."

Warning: Graphic details follow--if you are squeamish, please do not continue reading...

He calmed down enough and told me that he was laying in bed, trying to sleep and he woke up to someone telling him we were all dead. That if Thom got up, and he should get up, he'll see our bodies piled up in the living room... in parts. With blood all over. He was told that I ate his brother's head and so Papa (my father) killed me and dismembered me with a chainsaw (which we did not own).

Well, you get the point. Thom got up and went to the living room to prove to this voice that it was lying. However, when he got there, in his mind's eyes, he saw the vision of this carnage.

What do you do as a mom? What do you for your child to make him feel better? What do you do?

The only thing I could do. I talked to him. At first, we picked apart the voice's inconsistencies. Papa wasn't home. He was at work. We do not have a chainsaw anywhere. I am not a cannibal. We picked apart all the details that were "wrong." So that next time the voice began to tell him these types of things, he could tell the voice to go to hell.

We talked about what had him upset before he went to sleep. We talked about it all. He began to see that when he was sad, this It would come talk to him. So, to keep the It away, he had to figure out his sadness and try and fix it, if he could.

We then put a T.V. in his room. It "grounded" him to something of reality.

I also then began the okay for mood stabilizers and anti-psychotics. Today, Thom is on one medication for help with sleeping and his "oppositional" issues. It really does help him.

He also saw his neurologist then for follow-up testing. He was allowed off his high-fat content diet and his newest images showed some amazing things. Most of the damage had healed. Some of it hadn't. Some parts of the brain that others do not use, were all lit up like a Christmas tree. Amazing, the human mind. Terrifying, too.

I told the neurologist about these hallucinations and that Thom was seeing a psychiatrist, etc. She informed me Thom was making it all up and that it was all for attention.

Yeah. Okay, lady.

Maybe some other kid. Thom's imagination just isn't that developed. It still isn't really. When asked to write stories for school assignments, we get things like this: "My brother is a boy. He is eight years old." Very factual, no adjectives. Even his most recent Halloween story (written last year and published here at this blog) was the best he's ever done in this regard and he was 11 then. Nah... imagination just isn't a strong suit for him.

The best way for Thom to deal with things is by talking. He still enjoys the talking. Talking, with words or pictures as he still does, lets the emotions out. I give a safe place to talk about whatever it is that is bothering him. He knows that I won't take his words the wrong way or assume he is trying to be insulting.

For instance, last night, Halloween, there were individuals who thought I was a kid. I told my husband this when we returned and Thom added: "Must've thought you were a fat kid." He didn't say that to be mean. Yes, it hurt my feelings but that wasn't his intent. He was just being honest. He's still working on the "leaving things unsaid" part of life :)

I'm 33 and I still have trouble with that, too.

So, when I first read about "Communication Shutdown," I thought.. Hmmm.. that's great for them. But for us auties at my house? We'll keep talking, thank you.

Whether it's on Facebook, Twitter, the internet, or face-to-face, talking things out has been Thom's saving grace. After waiting to hear Thom's voice for so many years (and really it wasn't that long compared to Bboy), I don't ever want to hear anyone tell him to shut-up.

Granted, the organizer's intent was not to shush the individuals with autism. But that is how it came across. I'd much rather individuals tune in to Twitter and Facebook and blogs and find those adults and teens with autism that are out there and online. Listen to them. Understand them. Accept them. Don't shut them out.

 

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I went to the school this morning for Bboy’s IEP meeting. I had met, informally, with the individual responsible for heading these meetings earlier in the year (when school had first started, in August). And so, I knew what to expect.

 

Well, I knew what the plan for placement was going to be and what additional services there were going to be. Such as, he will be in a substantially separate classroom. Although, they don’t refer to it as that. They call it a “resource room.” I don’t care what they call it as long as he can get his academics done there! He will spend the mornings in this room with his paraprofessional.

After lunch, he goes to either keyboarding or R & P (rhythm and play). Then, he returns to academics in the regular education room. He will get another dose of math along with social studies and science. Social Studies and Science are his two favorite subjects.

On previous tests, Brandon has scored well in Reading (above grade level; superior level). He has scored low in Writing and Math (below grade level; low scores). That wasn’t any different this year, either.

But what *was* surprising is the work that he is doing in the resource room. Miss A has been working with him as his special education teacher, along with the help of a paraprofessional. I’m SO ecstatic at his progress!

She was absent today but provided a letter for the IEP discussion.

I was floored when reading the letter. But more on that later.

His reader is grade level 4 (level 9). His first week of school, (August 12^th, 2010), he passed 29/35 of his books for level 8 (third grade). He only needs to pass 25 to move to the next level. So, here it is about a month later (9/15/2010), and he has passed 18/39 books for level 9. He will soon be moving up. Possibly at the end of this week.

The math book Miss A uses is for grade 4/5. She states that when he gives effort, his scores are high (100, 80, 72, and 75) and yet when he’s determined not to do the math, his score is low (46).

Mind you, Bboy is officially in the third grade. *THIS* is exactly what I had been saying for the past two years. He needed the right academic setting to succeed. He needed the right amount of support. I’m so glad that his school now recognizes that and it has been evidenced by Miss Anne’s letter. Yes, his scores are low. That is because in the testing environment, he is not given the “support’ he needs. They can’t. So, without proper support, he cannot succeed. But, given proper support, he not only does grade level work, but ABOVE grade level work.

What is the proper support? More attention from the teacher. Attention that doesn’t coddle him but expects him to achieve. Attention that doesn’t make excuses for him but rather provides encouragement. And more challenging work. He’s been bored. However, regular education teachers cannot go above grade level; regular education teachers cannot provide the one-on-one attention he requires.

Also attending the meeting was Scott Farmer. I was so glad to get to meet him face-to-face today. We’d corresponded before over the summer. Mr. Farmer is the Federal Programs Director of the school district in which my children attend. He decides (well, with others) where the federal money goes to within the school district. We had corresponded about the need for a math program for the earlier grades (Pre-k-2) because currently the school only offers reading during the summer. I appreciate his attending the meeting and offering his valuable input.

Even though my son has moved on from those grades, I had corresponded with Mr. Farmer about the needs the children have because I know my son is not the only one who would benefit from a math program at that age. There are many kids who progress just fine with reading but need math help. Those children deserve the help just as much as the children who need and receive help with reading. Mr. Farmer was very concerned about this need as well and perhaps some future decisions will be made to cover that.

I have to say that while I may not have always agreed with school staff in prior years, at any of the schools, with regards to how they do things in general and in specific with my children, for the most part, they are courteous, respectful, and do care about children. I know any time a parent has to “battle” for services, this attitude sometimes gets lost. The child and his or her needs is no longer the focus but personal attacks are (from either side) against each other and/or the district as an entity. I want to remind parents that you can disagree with the school but follow the protocols in place to rectify that.

Stay with a positive and respectful attitude. Your child will receive the proper supports in the end and no amount of shouting, rudeness, or personal attacks will get that any faster and in fact may (in some cases in some states in some districts) result in delaying the services as the school staff begins to “fight back” just as a response to the parent’s (sometimes justifiable) outrage. But it would do your child far more to remain calm and professional as possible.

If you find that you have a need to scream, yell, curse, and otherwise vent, ask for a break. Step outside and yell at the top of your lungs in your car. Or mutter under your breath to yourself, pacing back and forth. Whatever it is you need to do so that you can return to the meeting with a clear head and a calm manner. And remember: it’s always about the child’s needs and not about “winning.”

Now, what had me floored from reading the letter his Miss A sent? She had Bboy walk from her room to the office, retrieve a phone book, and bring it back to her. Alone. Unescorted. And He Did It.  Without getting lost or distracted!

Bboy has always had a "shadow' at school. It could be a school staff member or fellow student. From the time he steps off his bus until the time he gets on his bus to go home, Bboy has not gone anywhere in the school alone. This is a good policy.

However, the time has come to teach him to be independent. And this was step one. And he did it. All by himself.

Okay, so to some parents it may be a small deal but to parents like me, I know you understand why I'm buying him a chocolate bar to celebrate later :)