He doesn't talk as clear as kids his age. He has different interests than most 10 year olds and kids his age don't get him. He talks about the Beatles and music and natural disasters. He asks the same question over and over, always getting the same answer. It either reinforces the positive feeling he received or he would like to try and rephrase the question hoping for a different outcome. Music is his anchor and us, his brother. He's a button pusher and drives his brother crazy. He has a sense of humor that allows him to laugh at himself (even when I don't think the joke about him is funny). He brushes off the names he's called and tries to insult back with the level it was intended but never with the same intention.
He over reacts when things don't go his way, by hitting himself or scratching the furniture. When he was a toddler it was much different. He would bang his head on any surface and scream at the top of his lungs, face red, hitting anything within reach. He was a late talker and when he did it just didn't come out right. He tried so hard and it didn't translate to most.
We tried to understand but didn't. First words came late and simple sentences later still. When Brian was a baby he would tap his finger on his lips and run his hands over the other so light it would tickle. He loved having his head rubbed. It soothed him. During one of his terrible tantrums I wondered if he felt like that outwardly, how awful must he feel inside? There was so much frustration and confusion in his little face. We couldn't bear it. As a parent there is a feeling of isolation and despair. No magic pill or therapy makes it go away.
We took him to his pediatrician numerous times to no avail. We were told 25% of babies bang their head during a tantrum in frustration. Most were boys. Most children with an older sibling that talked a lot (and his brother did) tend to be late talkers. There was an excuse for almost everything.
His behavior was so hard to understand. Things were crisscrossed. I felt the tantrums were a result of his speech delay. That's part of it. We were scared. Was he Autistic? There is only 2 specialists in developmental pediatrics in my city and one doesn't take new patients. The other was so busy we had to wait almost 2 years for an appointment and another 3 months for a diagnosis. At the end of the day we were given a ASD/PDD label. Knowing didn't stop the tantrums. Anytime we took him somewhere it would end with one of us carrying him to the car with horrified stares following us out the door. My heart would race and I never felt so powerless in my life. He loved balloons and if we didn't buy one he would slam his head and many times it was on a concrete floor. We would put him in a buggy because we would say no and didn't want to reinforce bad behavior. It didn't work. He didn't understand "No". When he did, he didn't like it. Who does. No one likes to be told no.
Potty training was a trial of patience. When I say patience I really mean it. It evolved from the normal diapers to pull ups at 5 years old. We were worried he would never go the bathroom. He would take his pull ups off and pee. To poop he would sit on the toilet with his diaper on then after take it off, wipe himself and put the poo in the toilet, flush. Then throw away to soiled pull up and put on a fresh one and wash his hands.
He was afraid of the water, falling in and it would hurt. He wanted to do it and one day while I was at work Mike took the boys for a bike ride. Brian hadn't gone poop in at least 2 days. He was holding it. He wanted to use the bathroom like a big boy but was scared. The bike ride did it. Still unable to fully communicate completely they rode into the driveway, he dropped his pants (he couldn't wait) and started going on the drive. Yikes!!! The thing is, this is a great thing. He didn't use the pull ups. He didn't want to and didn't have time to make it to the bathroom. Well, Mike picked him up (really fast), took him to the bathroom. He screamed he couldn't do it while he sat there using the bathroom. When he finished and Mike cleaned him up he realized it didn't hurt and he didn't fall in. No more pull ups after that. But he did insist on flipping the lid up to do all his business until a year ago. It's his logic and I've learned to pick my battles.
Learning came slower and when I had the school district do their own review they said he didn't need speech and only 30 minutes of occupational therapy (OT) a week. The school psychologist also said he could go to a regular class. No Way!!! He couldn't say any blending consonants, w's, l's, r's, j's....He simply couldn't and they didn't offer any speech. His hands didn't work right either. He tried an tried. I taught him how to make the number 1 with his hand, 2, 3, it was sooo hard. Those fingers just wouldn't cooperate. He couldn't button his pants until he was 7 and he just learned how to tie his shoes. By the way, it was the highlight of his year. Being able to tie his shoes was major.
He watched a cartoon The Eintsteins when he was 3 and became fixated on classical music. My husband is a musician and we have music everywhere. He had a keyboard and Brian was playing Flight of the Bumble Bee. I thought it was Mike and he thought it was me. It was Brian. Finger picking turned into two hands and his range goes from classical, to the Beatles and Paul McCartney(his favorite) to Windham Hill. He loves music to this day and plays guitar, drums and keys. He's good.
We tried a few medications. We didn't want to put him on anything that would fry his kidneys or liver and tried a couple of anti-anxiety meds that didn't work or made tantrums worse. I opted for patience instead of pills. I use and 5HTP and that seems to help.
More than anything...everything is in his time, not ours. When he's ready he applies himself and learns. He loved hooked on phonics and it helped him to learn the alphabet, counting and basics of reading. He watches shows repetitively and the information sinks in. I reinforce it with other activities that build on each other. I tried to teach him to count money but he's not quite there. Math is harder. So I introduce things and if it sticks we go with it. If he is still confused by it, I go another direction. He's delayed and I follow his ques. I can't make him learn multiplication tables. He doesn't understand the concept yet. So we add and subtract, spell and read, play music and watch documentaries. He spins to music and makes movies with his superhero toys on our camcorder.
He is a 10 year old kid with aspirations of being an astronaut or garbage truck driver or musician. He loves superheros and being with friends. His heart is as big as the moon and he doesn't like to see me upset. When he pushes to hard, he always apologizes on his own and gives me a hug. All I ask him is to try again next time.
He is our son Brian. We love him and his brother totally and completely. For those that don't understand a child acting out, look at the parent. Look at the stress in their face. 90% of all marriages with an autistic child end in divorce. It is stressful, but if you look beyond the regular expectations and embrace your child for who he/she is. It is an amazing experience. If it's bright to them but not you, give them sunglasses. It helps them so much. If it's windy and they say it's too cold, give them a wrap. To them, it is cold. If you see them staring at a tree or leaf, anything, for minutes on end ask them what they see. The response may surprise you. And if you put on the Beatles or classical music and they begin to get a little zany it's because they enjoy it. Spinning with arms spread out and humming. I found out after numerous tries of making him stop that he enjoyed spinning. He loved the feeling. So, I let him spin. He's outgrown it and it didn't hurt anything.
If you know someone that has a child with Autism Spectrum Disorder or Pervasive Developmental Disorder give them a hug. It's harder than you can imagine and rewarding beyond belief. It makes you look at the world through different lenses and experience sights, sounds and touch in a ultra sensory world. Most of the time it can over a year to get a diagnosis and to receive therapies is another ball game all together. The waiting lists are forever. Just hang in there. I pray for each and every one of you that understands this post. I felt compelled to write about it and it's just a bit. There are so many nuances. I just wanted to share....
Peace!
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