Sleep

...He doesn't do enough of it! Since the day he was born, Brogan has needed a ridiculously small amount of sleep to function. Unless there are some sort of special circumstances (and I am still not quite sure what those are) Brogan never goes to sleep before 10 and doesn't sleep through the night. Unless he is in bed with me. I can put him back in his bed multiple times and he just keeps waking up and coming into my bed. However, if for instance we are out at Jerry's parents and he knows I am in the room with him he won't wake up once. He takes the term "mama's boy" to a whole 'nother level. Apparently if I am not here, he doesn't wake up and wander into my room. I have considered having someone else put him to bed every night, giving him the illusion I am not going to be there that night, but there is no one around to do that. And I'm certainly not going to hire a baby sitter every night to do it. Actually, I would. But I can't see Jerry paying for that.

Ms. Kimberly

We were first introduced to Brogan's "main" teacher at our initial assessment/meeting. When she breezed in I'll admit I felt a wee bit apprehensive. "Ms. Kimberly" isn't even as old as I am (I seem to forget that I am almost 30 ... so that leaves a lot of graduation space on her behalf), crazy short blond hair, eclectic clothes, a kind of distracted smile playing upon her lips. Not someone I'd peg as a special ed teacher, an art teacher maybe. Throughout the meeting she threw out random questions that did not ease my fears; nor did they compound them. They just left me curious about how much she actually knew about Autism. After the meeting she led us to Brogan's homeroom (they have four class rooms they alternate between during the day for various developmental instruction). As we were discussing diets, potty habits, attachments, etc. Brogan had started peeling stickers off of some puzzles stacked on a shelf. When I realized this, I was embarrassed that I hadn't noticed and annoyed that he was eating the stinking stickers (again!). Rushing over to try to right the damage I started apologizing profusely; something I seem to have become somewhat of a pro at. Kimberly gently put her hand on my arm, looked me in the eye and simply said, "It's alright. This isn't the worst thing that he could do." Then she went over and simply finished peeling off the stickers he'd started in on and instructed him to place them in the garbage not in his mouth then turned to me and continued on in the same vein we'd previously been talking in. I was about ready to break into tears. So many times, in so many situations I have nearly felt drowned in guilt, remorse, shame by the fact that I do not know how to "control my son". Saw the looks other parents and random people have given me as Brogan has acted ... like Brogan. Being told softly by someone that it was "alright", that it was not a big deal, it could be dealt with on a casual level. Meant a lot to me. Immediately I knew my son was going to do just great with his new teacher.
Ms. Kimberly has not let me down. Everyday as I pick him up she has a glowing report on Brogan. "He's a star student!", "He is fantastic at music!", "He is incredibly intelligent", "We love having Brogan in our class!" He is eager every morning to go to school. His favorite phrase while I am helping him get dressed is, "You like school!" (he never says "I" it will either be "You" or "Brogan") Though I know more needs to be done, I am ever so glad this opportunity was presented to us.

Diet

In my reading I discovered a lot of people advocating a Gluten and Casein free diet. This, to me, sounded out right crazy. I'll admit, I have privately snickered at people who are up on their pedestal talking about the benefits of taking this out of your diet or adding that and how it has sooo dramatically changed their lives. "What a bunch of bungol" is what I thought. Even Jerry had talked to me about removing various items from Brogans diet as per what his business associate told him. I was a bit resistant. You could say I was in denial. Maybe if I didn't do anything, he'd just not be Autistic? I have no idea what I was thinking. I just know I was/am having a hard time with accepting what I had to deal with. Like it or not.
However, one morning as Brogan and I were driving around I had the distinct impression I needed to go to a specific MacDonald's. If you know me, you know I am not a huge fan of MacDonald's in the first place. So to get an impression to go to a specific MacDonald's was more than a little out of the ordinary. Add to the fact that it was only 10:30, it was a little out of the ordinary to get an urge to go there. Even as a muttered to myself, passing two other MacDonald's on the way to our destination, I drove on. Pulling into the parking lot I noticed a car with one a magnetic Autism ribbon on the back of their van. In passing I thought, "I hope I get the chance to talk to them". Trouped inside and sent Brogan into the playland area. As I was considering the menu, listening to my heart valves thicken by the minute, a lady came out to request a different drink. Her daughter came tumbling out of the play area after her ... spilling her drink everywhere. You'd expect tears or "I'm sorry mama!" But this little girl started screaming. As her mother quickly started trying to right the situation she was very apologetic, "I'm sorry, she has Autism and some things just really set her off..."I smiled at her and nodded to Brogan and replied, "It's okay, I understand" Four words that started a two hour conversation. Mostly about being an advocate for your child. She also brought up the idea of changing your child's diet (she had smuggled their lunches in and just bought french fries and their drinks).
I am a little dense. A little resistant to change. But when proof positive is smacking me in the face, it's hard to ignore. The next day I removed dairy from Brogans diet. This was a hard decision to make as he would drink up to three cups of strawberry milk a day, every day before this point. (*side note: the red coloring in the strawberry syrup is the worst kind of additive you can give your child. So STOP making your kids strawberry milk!)
I created a monster.
There are certain things in dairy that act much like addictive drugs and when they are removed from a persons diet, the effect can be much like taking crack away from a junkie. They go into withdrawal. For three days Brogan became a child I wouldn't wish on my worst enemy. Strike that. He became a child I'd send to my worst enemy. Haha. He became violent towards Rhiannon and I, screaming, throwing himself on the floor, hitting his head on walls, throwing the cats ... it was horrid. Every night after I put him to bed I cried. I second guessed myself. I was terrified of what I had created.
Saturday dawned to new beginning. He was calm, running around with Rhiannon, laughing. He had never uttered a spontaneous sentence before. He mimics almost anything you say and would repeat phrases he had heard at random times but never put appropriate words. On this day, that began to change. As he and Rhiannon were rolling around on her bed, tickling each other he shrieked, "You tickling me!" I had to hold back the tears. I was astonished. My son had just used the right words, in the right place, with out prompting.
This has only solidified my determination to move us into a completely GF/CF diet. It's taking longer to remove the Gluten from our diet, as it is EVERYWHERE. Crackers, breads, cereals, pastas. We shop mostly at Market Street now, it's like Whole Foods, but has a more extensive food variety. They have options that I'd never had imagined. Rice and corn based products, organic variety. Yes, our food bill has doubled. But really, what is the expense compared to what we are gaining?
As I peek over at Brogan, he's holding a cat gently in his lap with a brush in the other explaining to her, "I'm going to brush your hair" ... off runs the cat. He tried that yesterday, somehow he came away with a clump of hair. Smart cat.

First Notice

There are so many excuses parents can find for their child not talking ("My brother didn't talk till he was three, but then started talking in full sentences!"), being asocial ("His dad also prefers not to spend a lot of time around others"), having an intense focus on one subject (...alright, I did think that was a bit odd). With these excuses we find it easy to not see what is right infront of us. To over look what may be apparent to others but completely foreign to us. A friend had suggested previously that Brogan may have Autism, but after discussing it with Jerry who had researched it on the internet (for all of you out there, NO, you cannot find all the information you'll ever need to know on the internet!) I passed it off.
However, in April when we were up in Canada Conrad Boehme a childhood psychologist who specializes in such diseases as Autism, Aspergers and the such observed Brogan at a family dinner and helped me fill out an extensive questionnaire regarding the things I had observed in Brogan. The conclusion was positively Autism. Though on the "high functioning" end of the scale, still a positive result.
It's rather devastating to discover your son is something other than what you had dreamed he would be. As I read and researched and studies and dug I discovered that I did not have to let go of the dreams I have for my son, I just have to alter them. Reassess who my son really is and build dreams around that person. He may not be the person I had dreamed, but that doesn't mean the person he will become is any less fantastic.
After our return from Canada I dove head first into trying to find programs, people, ideas that would help us deal with the issues we were facing. I found very little hope in the Dallas/Fort Worth area. Everywhere I called there was at least a year wait to even be assessed, then at least another year wait for placement into any program. That was too long! I decided to expand my search and looked into the Austin area where I quickly discovered the services were plentiful and not so in demand. I set up an appointment at a treatment center with the anticipation of seriously having to consider moving to Austin.
Jerry had also been talking to people about Brogan and discovered one of his business associates has a daughter with Autism. They discussed the course this man had taken, what resources he'd used and what improvements they had noticed in her. It turns out the man is a Free Mason, therefore has a lot more strings to pull and access to services the average person does not. He gave us some names to call for an assessment. I honestly had no idea what kind of influence the Free Masons had till I made my first call. The wait time, when I mentioned this mans name, went from 1-2 years to a month. Goes to show you the old addage is true, "It's not what you know it's who."
Other events fell into place during this time also. At the beginning of the school year Rhiannon had a speech placement assessment at her school I was required to be at. I was unable to find someone to take care of Brogan during that time, so I brought him along with me. After only a few minutes in the same room as Brogan the speech therapist inquired if I'd had him assessed (that seems to be a word I use a lot lately) by the district for placement in their program. I explained to her that I'd called a few times and never got a response back. She told me she'd arrange a meeting. Once again, within a month Brogan was set up for a play session with the districts specialists.
Brogan was given the diagnosis of "High Functioning Autistic border line Pervasive Development Disorder Not Otherwise Specified." Which qualified him for placement in the districts PPCD (Preschool Program for Children with Disabilities) program 5 mornings a week, three hours a day. Occupational therapy daily and speech twice weekly for 1/2 hour. Brogan is very much a mama's boy, so I was rather concerned what his reaction would be to being dumped with strangers every morning. He surprised me and completely loves going to school. When I get him out of truck every morning and hand him over to his teacher he has a little smile that plays upon his lips. It's really very sweet.
This is not the end. I am not content with him simply going to school and hoping the progress they make there is significant enough to "main stream" him by Kindergarten in two years. Proactive and involved. Constantly researching what I can do to increase the chance of unlocking the little boy inside.

Begin Being Brogan

Our son, Brogan Wesley Crabb is smart, funny, inquisitive, observant, asocial ... Autistic.
This blog is intended to be an outlet for those closest to him. A place for us to express our feelings in dealing with the disease, doctors, teachers, friends, family and casual acquaintances.
Come along as I describe triumphs, heart ache and all that is associated with raising a uniquely challenged child.
I will try to share "moments" of all sorts so you can share in the experience of living with my baby boy.