Wednesday, March 31, 2010

Stupid Bottle!

While hanging out in a waiting room Brian started to do some recreational stimming. One of his trademark moves is rolling his head around in a circle while keeping his eyes on the ceiling. He was standing near a table where he had set his water bottle and on one of his head rolls, he knocked the water bottle over with his noggin.

There's no way this could've hurt him- it was an almost empty plastic water bottle but he freaked out. He stopped his stim and picked up the bottle and threw it across the room and then went after it like he was going to body slam it. I caught him and gave him some big squeezes while hiding the bottle so he would end his retaliation.

Thing is I couldn't stop laughing. Maybe I had finally lost my mind. Honestly, I know I've been kind of negative in my posts lately because I feel like we've had a lot of setbacks recently, but most of the time I try not to sweat the little things and find the humor in our day-to-day lives. I'm not sure what the other people in the waiting room thought of me laughing while my son had a tantrum, but who really cares.

So watch out stupid water bottle, Brian will get his revenge.

Tuesday, March 30, 2010

Intense Emotions

It was one of those evenings when everything seemed to be spinning out of control. I was trying to make dinner on our "Italian Night"- shrimp scampi, bread, and homemade bruschetta. Corbin was building legos at the table, the phone was ringing every five minutes, mental list going a mile a minute of what I had to get done tonight, and I was still feeling the stress from taking Brian to get blood taken this morning (which took four adults to administer). In the midst of chopping up some parsley I heard a huge tearing sound come from the table.

I look over and see Brian holding my fieldwork assignment sheet- only in three separate pieces. An entire wave of frustration and overwhelming panic flew through my body and I yelled, "NO BRIAN!!!!"

Yelling is a very, very rare thing here. It doesn't happen often- it's usually saved for running out in roads or other such safety hazards. Because it is so rare it really affects the boys when it happens.

Brian ran upstairs screaming and crying. I let him go, generally he just needs some time to gather himself then he'll join us. Well I was right he did join us about five minutes later. But there was something different about this time compared to all other "episodes". This time he was covered in rug burns. Two on his back, one on his upper shoulder, and one on his wrist. I don't know exactly what happened but I imagine he went upstairs and threw himself on the floor and kicked and writhed and screamed until the actual pain took away his emotional pain. Until he felt that inner balance again.

This was what it was like when he was first diagnosed, before we started the diet. He banged his head so many times each day that he actually had a permanent bruise right between his eyes on his forehead. He'd have bite marks on his wrists from himself and a bald spot on the back of his head from pulling his own hair out. When you'd try to stop these behaviors he would fight and fight you until he could do it and then you'd just feel a sense of calmness come over him.

This is the truly ugly part of autism. Children hurting themselves to feel better. Children having such intense emotions that they can't handle them. Teenagers on the spectrum often have such intense anxiety and depression that parents need to be proactive about suicide attempts. Can you imagine the pain of seeing those harsh red marks on your child's pale skin as he walks to you with tears in his eyes looking for a big squeeze and reassurance that you are no longer angry with him.

I held him in my arms, trying not to cry, feeling guilty over being so upset about a stupid piece of paper. Yet knowing that it wasn't my yelling that caused this, it was this disorder my son has. This autism that makes his life and our lives so hard. So unimaginable hard for all those who don't live it.

Sunday, March 28, 2010

You on a di-et!

I quote Disney movies way more than any healthy adult should. They're Brian's favorites so I have seen them all so many times and plus that's where he gets most of his scripts from so it's nice to be able to "communicate" with him via Disney dialogues.

Today I was making lunch and for some reason Dory's voice (Finding Nemo) came into my head and I sung out loud, "No eating here tonight. No eating here tonight." I was just singing it to myself, actually unaware that Brian was sitting at the table waiting for lunch to be finished, when I heard Brian say- "You on a di-et".

I've never heard him do that line before and it cracked me up! Sure, lately the only spontaneous utterances I get from him are lines from movies, but I love hearing them just the same!

Friday, March 26, 2010

there IS something in the air

It's no secret Brian has suddenly regressed. It confused me. Why didn't he regress or have trouble at the beginning of the school year. Why is he struggling now?

Then I heard another autism Mom say her little one was regressing. I joked that it was something in the air.

Then I heard the same story from three other parents of children with autism. Then I read some comments on a post from Dani G's blog and a woman was talking about a presentation she watched by Kelly Dorfman on pollen causing regressive-looking behaviors.

I was intrigued at this point. Was there REALLY something in the air affecting Brian? I had to research this. I googled Kelly Dorfman and found How the Immune System Talks to the Nervous System.

Dorfman says things like pollen, mold, and grass can activate the immune system by sending signals to the nervous system which alters perception and behavior. In the article she mentions a Dr. Marvin Boris who noted these regressive behaviors in children with ADHD/ADD and with autism. He said that though they didn't have obvious allergy symptoms their reactions to the pollen was chewing clothing (Brian's been chewing everything lately), lost language skills (he's been struggling with even giving yeses and nos all of a sudden), and aggressive behaviors (he kicked over a chair yesterday when he was upset- I have NEVER seen him do anything like that before).

After that article, I researched Dr. Boris and found his research paper Pollen Exposure as a Cause for the Deterioration of Neurobehavioral Function in Children with Autism and Attention Deficit Hyperactive Disorder: Nasal Pollen Challenge . The study concluded that 55% of the ASD subjects and 60% of the ADHD subjects regressed significantly from their own baselines after being subjected to the nasal pollen challenge.

This really, really intrigues me. His regression perfectly coincides with him starting to play outside more and more. Also, just knowing all these other kiddos that are doing the same type of regressions as him at the same time of year is really fascinating me.

Full Inclusion, No More

Though Brian transitioned into an inclusive program at the beginning of his Kindergarten year with no problems, we are now looking at adding in a lot of day treatment time into his day.

For a month now Brian has been refusing to do any work at school. He tantrums, he elopes, he lets them know he doesn't want to do it.

I have been busy making meetings, scheduling new evaluations, and finally decided to just do a full IEP, which we had yesterday.

Though I'm still upset I haven't been able to get the behavioral specialist I want, and I'm not giving up on that, I have to agree with what we have decided for him. I don't have to be happy about it but I know it's best for him.

Why does having to be taught one-on-one in the day treatment room upset me? First of all I am bitter that suggestions that I made at the beginning of the year weren't followed and I think if they were followed we wouldn't be in this situation. If visual schedules were used consistently, a quiet place to work without any distractions, and a sense of "strict" guidelines were in place I don't think he would of learned it was okay to just get up and walk away from the assignment. It's a learned behavior, because he didn't have it at the beginning of the year.

Secondly, I'm upset because, for me, personally, this is another setback. I was proud to say he was excelling in an inclusive program. It made me hopeful for his future. Backsliding into the day treatment room is making me sad and making me lose a little bit more of that hope.

Staying positive makes me hope this will be short-term. It will teach him once again that it's not okay to refuse every task put in front of you and once he realizes that again maybe he'll be able to start doing the work portion with his classroom. He will still be with his class for areas that he does well in- circle time, morning meetings, snack & lunch (of course lol), and the "specials" (gym, music, etc.).

Life with Brian will always be filled with awesome moments mixed with set-backs and it's something parents of special-needs children learn to live with. It's a long road ahead of us, and learning to let go of what I want his future to be and accepting what is best for him is a very important skill that I'm still learning.

Tuesday, March 23, 2010

Stories Through Pictures

Every single day there is something that happens that just makes me wonder, what is going through his head. Brian loves the webcam and a few weeks ago we were sitting at the table when he pointed to the camera on the computer. I turned it on and he started making glasses with his fingers and then did the same to me but he had a continuous dialog through the whole thing. It was like he was telling a story. Were we pretending to be Wally? Were we reenacting when we went to an IMAX theater? Was he remembering his photos he had done wearing his cool-dude sunglasses? It was really so cute and I can't do it justice with my words, but here are some pictures.

Friday, March 19, 2010

Smoke-Free World

We got a great information pack on the risks of smoking cigarettes in the mail the other day. It was great timing as Corbin has been on a healthy kick and spends a lot of time telling people they need to stop smoking or they'll die (his harsh words, not mine!). Also good timing, because my Dad quit smoking on March 1st! I am so proud of him and excited for him.

In this packet, we recieved a postcard for the child in the family to draw what a smoke-free world would look like. Corbin drew his Grandpa and him because he said now Grandpa will be able to play even more with him. I love it!

Good luck Grandpa with your new healthy choice! We have faith in you. :)

Tuesday, March 16, 2010


You know what sucks about autism? Well I'm sure you know a lot of things that suck about autism if you read my blog, but we're sticking to one topic today.

The fact that autism is really a pseudonym for "All DSM-IV diagnoses, in varying extremeties, rolled into one individual". Meaning, that if you have autism, you must likely have some ADHD tendencies, OCD tendencies, schizophrenic tendencies, antisocial personality disorder tendencies, bipolar tendencies, anxiety tendencies, and the list goes on and on and on.

Lately Brian has been becoming more stuck on his "OCDness". Doors have to be closed, light switches have to be either on or off depending on the time of day or occasionally he just decides if one light goes off every one in the house needs to, sometimes he needs to flash the lights on and off three times before going up the stairs, in places with rows of things he has to touch every row, he has to be the last one out of the house so he can close the door, the fan in the bathroom has to be on whenever anyone is in there (not just him), toilet seat has to be down, etc.

He actually woke up out of a dead sleep two nights ago when he heard me use the bathroom to come out and make sure the toilet seat was down, light was off, and bathroom door was closed.

Yesterday we were doing "homework" and he was fighting me, really fighting me with every muscle in his body. I was holding him thinking he was just trying to avoid the "work" and I was breaking out in a sweat from trying to keep him with me. He finally wriggled out of my arms and ran straight for the light switch on the stairs and turned them off. He then ran straight back to me, sat on my lap with a much more relaxed body, and completed the work I had laid out for him.

I wish his OCD behaviors could carry over to his playroom!!

On the serious side, I'm not always sure how to handle these things. Sometimes they can be really hindering and slightly annoying but what is going through his head when he just NEEDS to do one of these tasks. I've read books and seen specials about OCD and I know that to people with this disorder they really do NEED to do those things and they don't feel well until they do. I wonder if this is how it is for Brian.

Monday, March 15, 2010

Surviving Out Of Routine

Our morning routine was all kinds of different which usually means all kinds of tantrums.

First of all, I was home. I am generally already out of the house and on my way to school when the boys get up. Secondly, I was putting him on the bus. If I'm home I never put Brian on the bus- we have the bus set up only for days that I am gone for school. Thirdly, Corbin wasn't getting on the bus with Brian. Corbin was sick, and so was I for that matter, which was the whole reason I was home.

I was prepared for some weirdness at the least, but most likely some sort of tantrum. Yet, it never came. Brian did so well with all the changes this morning.

I walked him up the steps of the bus- his legs are so little he struggles a little bit still with the steps, especially with his backpack on. I watched him pick a seat two rows behind the ed tech that rides the bus for him, even though Corbin wasn't there to sit with him. I stepped back and was waving furiously at him and he wouldn't wave back. Then the bus started moving forward and he perked up and instead of waving- the easiest mode of communication for him- I watched his lips form the words "Bye bye!" I yelled back, "Bye!!!!"

What a great morning!

Thursday, March 11, 2010

Morgan's Wonderland

I don't know what's up with me lately, but I have been super emotional. I think just stressed out, being pulled in all directions at once. My latest tears were sprung for Morgan's Wonderland. Happy tears!

This is a theme park made especially for individuals with special needs located in San Antonio, Texas. It includes a sensory village, a train, a music garden, water play, and lots more. Everything is completely wheelchair-accessible- even the sand boxes, swings, and carousel! Every family member gets locator wristbands and there are touch screen display monitors all around the park so you can find your child if they run away! Individuals with disabilities get free admission into the park! Fees for other family members are VERY low and there is free parking. You have to pre-register before you go and they keep the numbers of attendees at a low number so no one is getting overwhelmed. F

Doesn't it all sound too good to be true? Well it's not and they opened their doors on March 3rd but their Grand Opening is on April 10th!

Wednesday, March 10, 2010

A Peek Into the Future

Yesterday as I was creeping along at the School Zone speed limit by the high school I noticed a young man walking alone from the direction of the school. As I was driving up behind him, I saw a pause in his steps. He did a tiny hop and flapped his hands. I started to drive past him and I saw him looking up towards the sky with a huge smile on his face, he flapped a bit more and then kept walking. I looked in my rearview mirror and saw him repeat the routine.

That smile I saw on his face was Brian's. I could see my little Brian in this young man, walking home from school all by himself. I shouldn't make assumptions, but I'm pretty positive this teenager has autism. It made my heart grow in my chest, it made me hopeful for things to come. And I'm still in amazement of that smile and how similar it was to Brian's.

Tuesday, March 9, 2010

Why is it that whenever Huffington Post puts out a piece by someone advocating for CORRECT, ETHICAL studies to be done on vaccinations that all the crazies come out of the woodwork? It always seems to me the haters are people who are completely UNTOUCHED by autism and have NO idea of what us parents have seen and watched happen to our children or they have been touched by autism and just refuse to try any biomedical approaches. Have you ever seen a parent scrutinizing such articles that says they have tried such approaches and now after doing so, doesn't believe in this stuff? Maybe I'm missing them in the hundreds of comments that usually follow such articles, but I'm really guessing I'm not.

Why does no one want to believe the parents? We can all agree there is no doubt that there is an exponential rise in the prevalence of autism but we can't agree whether that means there should be more research in WHY there is more? I just want to throw my hands up in the air and ask "WTF!?!" All I want is answers!

I guess it just doesn't matter until someone you love slips away. Then you'll care.

All Out of Faith...... for now.......

Something's up with my little man. I think I've been in denial and ignoring it but he's regressing. Again. Eye contact has diminished, it's like pulling teeth just to get him to say "yes" or "no", less laughter, more stimming and playing alone in his room.

I have been getting reports for a couple weeks now that he's struggling at school. He went from being in the inclusive classroom almost all day to having to be removed several times a day. He's refusing to do ANYTHING besides large movement activities. He's throwing tantrums. All new stuff for school. We've had several meetings already and another one tomorrow to try to figure out what is going on. There's talks of moving him out of the inclusive classroom.

It's depressing. I don't know what to do. I just feel like I've run out of tricks. I feel like I'm becoming more and more comfortable with the idea that he may not progress much further. Then I get mad at myself for thinking that way. We're definitely struggling this week. I hope it turns around soon! I have to believe that it will!

Monday, March 8, 2010


Jingle Bells. Under the Sea. You are my Sunshine. Tomorrow. The Hot Dog song. Happy and You Know It. Heads, Shoulders, Knees, & Toes.

Just some of the songs that Brian can sing independently and frequently does.

If only I could figure out how to carry over these techniques to just plain old talking to me, telling me what he wants, saying what's making him mad, and telling me when he's happy.

I hold on to the hope that if he can sing songs he will be able to do those other things some day!

Tuesday, March 2, 2010

Every single day this is my son after school. He comes home, uses the toilet (as he tries to avoid it at school), plays with his trains for about five minutes, and then asks for a movie and lies down.

It's so tiring for him to try to conform and meet the demands of school.

Bath Tub Paints

I use to do this all time- but I just mixed food coloring with some tear-free baby shampoo. I found a recipe online that also said to mix in a little bit of corn starch, which gave it a great consistency. It worked wonderfully and the kids LOVED it. Brian loved putting it on his hand and then putting his hand under the faucet to see the colors run into the tub and Corbin, well, he just loved putting them EVERYWHERE. I give this activity two thumbs up!