Lots of Love & Jiggly Butts

Today in the car I asked Corbin if he was excited about his Cub Scout camping weekend. He replied, "Yes but there is one thing that makes me sad." "Oh really? What's that?", I replied. And he said "You aren't going to be there!"

I really am a lucky mommy.

Then twenty minutes later he was walking behind me at the grocery store and yelled out, "Hey Mom, this is so funny! I can see your butt jiggling in those pants!"

Sigh.

This is forever.

This is forever.

That was the thought that just popped out of nowhere as I looked down at my beautiful son. He was standing there, doing his own thing. He wasn't having a tantrum or screaming or misbehaving. It was a quiet moment but he wasn't there with me. He was in his own world all by himself. A flash of him as a ten-year-old, then a teenager, then an adult all went through my head- still alone.

These moments always catch me off guard and this time was no different as I felt my eyes brim with tears.

And it was then that I made the decision to go for it. We're going to the Thoughtful House- one way or another! There is no way I could look at Brian as an adult and say to him that I didn't try everything that was offered to me. I love him too much to not take this opportunity.

Stroke/Autism

One of the books on my summer reading list for school is "My Stroke of Insight" by Jill Bolte Taylor, Ph.D. It's a fascinating account of Dr. Taylor's recovery from a stroke. Dr. Taylor is a neuroanatomist and recounts with much detail from the very beginning of her stroke through her recovery.

Why I'm posting about this is because I can't help but notice the similarities between how she explains her brain during and shortly-after the stroke and how adults with autism have explained their own brains. Thinking in pictures, having to go through "files" to remember things in their own mind, knowing what they want to say but unable to form the words, hearing, seeing, and feeling more of the sensory inputs from the environment.

She talks about how to get from A to C she had to realize there was a step B in the middle that needed to be reached first. Sound familiar to anyone? She says that sometimes it was hard for her to concentrate on her recovery because all of a sudden she was at one with her environment. She actually felt a sense of tranquility. Many times I have watched Brian lie on the couch, looking into the air, smiling and laughing. I have often felt he sees the world in a much more soothing, happier light than I do. It took her longer to process language and needed people around her to speak slower (not louder) and clearer. So many similarities.

The medical world is still such a mystery.

Choices...

I am not a decision maker. I have a hard time making them. I have a big one to make right now.

Did you hear about the Bright Eyes Project that the Thoughtful House was putting out? 50 grants to 50 different families to help them get services they may not be able to financially afford on their own? Well I applied to it on a whim. Thought to myself, wouldn't that be great?

Well, I got accepted. Heart skipping, wanting to do a happy dance. Except....


it's not just a free trip. Of course, I knew that from the beginning, but at the beginning I thought I had zero chance of actually being picked.

So if I accept this grant (I told them today I couldn't say yes at that very moment) Brian will get $5,000 worth of treatment. I will need to initially cover transportation there (Austin, TX), hotel (Thoughtful House does have several hotels in the area that offer discounts to their clients though), a $250 co-pay, and maybe some money towards blood work and supplements (no exact dollar amount as they are still working on the labs offering discounts and/or donations).

That's still a lot of money for a single mom who is in school full-time and working as much as I can fit in with my school schedule. Not to mention after the first visit we will need to do one more visit a few months later- so again transportation, hotel, and at that point a $200 co-pay.

Every fiber in my being thinks I will regret this if I pass it up but every logical cell in my brain is telling me I need to be careful that I don't stretch us too thin so that we are struggling just for everyday expenses. I already have a ton of fundraising ideas I could put together but will it be worth it? What if I do this, spend all this money, and nothing changes?

I'm at the point of Brian's treatment that I have been struggling with the whole idea of recovery. I will always believe Brian can learn and develop more on his own curve but am I just holding on to fantasy when I am hoping for him to actually lose a little bit more of his "autism" (you know what I mean).

I'm struggling with this decision as I don't really know anyone else "in real life" that has gone down this biomedical road and I wish I knew people who have been to the Thoughtful House as well to weigh in on this decision.

Where's that Magic 8 ball when I need it?

Great Expectations

My sister asked me how our trip to the zoo went and I paused and thought before answering. I ended up replying, "It was good." The pause was because I was a bit disappointed in how not-excited Brian was with the experience. But as I thought about it and described it to her, I stopped and said, "I think I just have too great of expectations." Because it wasn't a horrible experience, it just wasn't what I had pictured in my mind. Maybe it's that acceptance piece that I'm still working on?

We started our excursion at the butterfly gardens- it was the highlight of the day for Brian. Maybe because it wasn't busy or loud and just seemed serene.


























I had taken the boys to this zoo when they were really young and I remember Corbin, almost three years old, had loved all the feeding stations at the zoo and I thought both boys would be able to enjoy it this time. Brian, after all, always feeds his horse after riding him. But again, I was wrong. The first animal we came to that we could feed was the llama- no way was Brian going to feed him, but he did move my hand (use my hand as an object- age-old autism screening question) to feed the llama. I am happy to say Corbin loved it just as much as he did four years ago.












The baby goats were cute- but as soon as we opened the gates to go in Brian screamed- so we sat in the shade while Josh and Corbin fed them.












And my favorite- the deer. So amazing how they can just walk right up next to you. I love it and could stay in that section for hours...if I was alone.






























This picture I took of Brian while Corbin and Josh were on Go-Karts (another thing Brian screamed "noooooo" at) is so great. It's a perfect depiction of his mood for the whole day- just hanging out with better places to be.

Retreat Memories

Sometimes a picture really can say a thousand words.

But do you think I'd simply post pictures? My rambling mind doesn't allow me to do such things.



It's been a while since Brian had a strong aversion to bright lights- but it was very apparent this weekend. He would cover his eyes, hold my arm over his eyes, and/or just cry. The first day and a half he refused sunglasses, but finally accepted them. Once he saw the positive effect, he wore them faithfully.



Saturday night's entertainment was the Amazing Magic of Wes Booth. How excited was Corbin when he was called out of the crowd to be the magician's assistant???



Brian hasn't had an apple in ages, due to them seeming to contribute to some reactions. And after a few meals of him barely eating a handful of something I gave in and let him have an apple at the cafeteria. He's pondering this moment of leniency here.





Trains. What can I say about trains. Or better yet, what can I not say about trains? Brian was in heaven.




Just call him Zoolander. Within five minutes of pulling into the campus he asked if he could pose on this rock, I laughed and told him I'd do it before we left. I forgot. Corbin did not. This was our last moment before leaving the retreat.

Another Retreat Gone By Too Fast

Another ASM Family Retreat over with. Another weekend gone by way too fast. I went with so many expectations thanks to my wonderful experience last year and I was never disappointed. I have so many things I want to say about it, but I feel a lot of it will be a repeat from last year's blog, so instead I'll use my handy bullets, my favorite way to condense a ton of information.

The Cons:

♥ Brian's issues he's been having lately with certain things needing to be just so seemed so much apparent in the tight quarters of our dorm room and sharing a bathroom with other families. The first evening was so full of tantrums those aforementioned expectations were in danger of being broken.

♥ Sleep. Ugh. I shared a bed with Brian and seven trains in a room that felt like it was 90 degrees. Brian decided to have a reverse reaction to melatonin and he just could not sleep. Therefore I did not sleep.

♥ Brian didn't have a BM all weekend.

The Pros:

♥ Sleep may not have been great BUT Brian stayed dry both nights- thankfully! Really would not have been in a good mood if I had awaken in a pool of urine.

♥ Josh accompanied us this year and I was really happy with how he jumped right in!

♥ It was great being a "veteran" retreater and having respite providers remember the boys and seeing friends we had made last year and seeing how everyone has grown.

♥ We had more time to get to know the other parents and by the end of the retreat I was really able to put each child (typical and autistic) with which parent.

♥ I had a wonderful, free massage!

♥ We all felt welcomed the entire weekend. Again, that feeling of belonging. Not being judged by others when our child is flapping. Not having to try to get Brian to conform.

What I learned:

♥ Maine has the third largest prevalence of autism in the United States- 1 in 80 (it was 1 in 77).

♥ That ASM has a 5 page breakdown of the new DOE regulations of the most common problems we face as parents (so if you are in Maine- email them for a copy!).

♥ Seizures, which I knew were common in kids with ASD, generally start at the following ages: 5, 10, 15, and 20 years. So though I thought we were in the clear maybe we're not? (But of course hopefully we are!)

♥ That there are SibShops in Maine for siblings of kids with disabilities. And we aren't the only family that struggle with how to make sure our "typicals" are getting the attention and information that they deserve.

♥ Maine has a couple big grants hopefully coming our way thanks to Obama finally putting money in the Combating Autism Act (that Bush started to look cool, but failed to remember to put any money behind it). They are working on making universal screenings at 18 and 24 months for autism to be included in the well-baby visits.

♥ Most important lesson: Remember to never give up on advocating (Dani G just wrote a great post on this as well). Remember the supports you have at ASM- they are more than happy to send a specialist to an IEP meeting if you are having a hard time and they'll help you find a lawyer as well!

♥ Attended a great class with an OTR on sensory integration- I'm going to do a separate blog with some of the stand-out pieces later on.

Cluttered Mind Confessions

A lot on my mind lately....

☼ If the new consolidated school system is as prepared and organized as Brian's "summer school" then I'm in for a hell of a year (please insert sarcasm).

☼ Brian's been having bowel movements, left and right. Gross, tar-like, sticky, dark messes. He even did it in his pants while we were at family's last night. Hasn't had an accident in...forever. We've had three clogged toilets, numerous clothes changes, and lots of baths over the past two days. Will there be a day that I won't talk about poop and have my life consumed by it?

☼ Brian's new favorite thing is to dump all the water out of the bathtub on to the floor. Bath time use to be quiet time for Mama. I could put him in there and sit in my bedroom next door to the bathroom and read. Not anymore.

☼ I told Corbin he was handsome the other day and his reply was "Only guys on motorcycles and guys in wedding shirts are handsome Mom".

☼ I wanted Brian to match sight words the other day and he surprised me by reading seven of them. Really reading them, I didn't say them first or anything.

☼ Corbin's almost completely done with his splint. Only has to wear it for rough, outdoor type of play.

☼ We're gearing up for the annual Autism Family Retreat this weekend. So excited for some rest and to be in that environment where you fit in and you never ever worry what someone is thinking about your child.

☼ I had my first true-blue grown-up weekend this past weekend. Well first one in a long time anyways. I had forgot how nice it was. Friday night we went out to dinner with a bunch of people to celebrate a friend's big 4-0. Then Saturday we enjoyed the Blues Festival fun in town. It was nice to be a grown-up with no responsibilities. At least ones that really matter. But it was even nicer to get those hugs from my babies on Sunday!

Perhaps

Your brother or sister might not realize that people behave differenty in different situations. He or she has not learned the rules for how to behave in order to fit in. Perhaps he or she does not care about fitting in and does not worry about what other people think. Perhaps we worry too much.

Those last two lines are my favorite text so far out of the book "Everybody is Different" by Fiona Bleach.

Ruler of the Universe

I bought Corbin a new book, Everybody is Different, for us to read. I want him to be aware of his feelings about having a brother with autism, and realize it's okay to have feelings that might seem "bad".

The book starts right off with explaining autism. It says at one point that a lot of times people with autism behave as if they are in their own world. Corbin stopped me reading at that point and threw his fist in the air and yelled, "I knew it!! I knew Brian was ruler of his own universe!"

I have no clue what he was talking about- I tried to get him to elaborate but to no avail. Regardless, I thought it was a funny little moment.

My Mini-Me Theory

I get asked the question, "How do you do it?", from other parents on a regular basis. Not only are they asking me how I parent a special needs child but also how I parent without yelling and losing my cool. Honestly, I'm not perfect and I do lose my cool occasionally but it's definitely not the norm for me.

I have this theory about parents who are always fighting with their small children. I believe that parents some times think that their children are going to be "mini-mes" and they don't realize that every child is different and every child has their own unique personality. And not accepting that is the key to all of the conflict.

I was trying to explain this theory last night and I was using Corbin and I as an example. I started it off with "Corbin and I clash all the time" and I got an "awwww", sad sounding reply. It wasn't meant to be sad, I was just being completely honest. It doesn't mean we fight or that I don't get along with my child! It's just that I have accepted (acceptance seems to be a theme this week for me) that he is a strong extrovert and I am naturally a relaxed introvert.

I come home from a long day and I want to sink into my couch and relish silence and check up on my blogroll. Corbin comes home from a long day and wants to jump on me and the furniture and be inches from my face while he chatters about anything and everything that crosses his mind.

I've just learned how to work around that and try my hardest to make sure we are both getting the time we need to feel good. At the most primal level I would think "Omigod! This kid is driving me up the wall!!" but luckily I don't think on that level and know this is Corbin and this is what he genuinely needs to do.

I think if more parents would accept their children for who they are and their sensory needs (something all parents should be aware of- not just us mommies raising kids with special needs) that there wouldn't be so much fighting and a happier household for all.

I was excited.

Tonight as I laid in bed with Brian I pulled out a new toy. It consists of a magnetic board, magnetic numbers, and a flip book with pictures of different amounts of pictures. I never know what Brian's reaction will be when I present him with a new learning experience but he was excited about this one!

I was excited at how little teaching he needed, he knew what was expected and he just did it. I was excited to see him be able to say how many objects there were without having to count one-by-one any time the objects were five or less. And when he did have to count them he didn't need to point and count, he could visually track and count them. I was excited to see him realize, with no problem, to take a "1" and a "0" to make "10" when that was the appropriate number. I was excited that when he was questioning himself he would look at me with this inquisitive look and I'd nod or shake my head and he could read those gestures from me. I was excited that when I yelled to Josh to come see what Brian was doing, Brian would answer each one and look at Josh with a big proud smile on his face.

It was a good night. :)

My Little Cowboy

Yesterday was our first session back at Freedom Riders, a local therapeutic horseback riding center. This is our second year and last year I really enjoyed watching Brian find something he truly loved to do. There's a lot of benefits that come along with hippotherapy including relaxing tight muscles, building muscle strength, sharpening hand/eye coordiation, gaining a sense of body-awareness, self-control, and self-confidence. But the reason I love it so much is because Brian doesn't have activities that he loves to do. He has trains and movies. And that is about it for interests. I have my other child, Corbin, who I ship to soccer, baseball, football, basketball, cub scouts, birthday parties, playdates, sleepovers, art camp, etc. and it makes me feel guilty, even though I can't do much to change it, that Brian doesn't have activities he is just dying to go do.

I wondered if Brian would love it as much as he did last year. I soon realized I had no reason to worry. He knew what he was there for and he was quick to get his gear on and had no problem leaving me behind to walk into the arena with his helpers for the day.


This is Gene. He's a different horse than Brian had last year but he didn't seem to mind (or notice) the change.

Brian's "I'm so excited I need to squeeze my cheeks and close my eyes" pose.

Riding Gene like a pro!

Sometimes the riders change position to get different input. Last year Brian enjoyed this but now that he has become overly-concerned about things being the "right way" this was more of a struggle for him as he kept fighting his helpers and trying to get back to facing the front.

Freedom of Choice

This past year Brian had a regression. Though it seemed he came out of it as there were no more tantrums, I'd just be in denial to say he is back to where he was before he started kindergarten.

But during this same regression Brian did gain something- he has grabbed a hold of his freedom and he's not letting go. He's standing up tall and reaching developmental milestones that "typical" kids go through and parents may not be so happy about. It's just the simple task of knowing you can say "No". Knowing you can make your own choices. Knowing you are your own person.

Brian had many years of ABA. I won't say bad things about ABA because I know ABA was what helped him reach some cognitive levels as well as helped us so much with unwanted behaviors (self-injurous, running into parking lots, potty training). ABA worried me because I didn't want Brian to end up relying on certain cues and becoming robotic. I was a constant advocate for him to receive these services but for it to include free time, changing the cues often, absolutely no negative reinforcements, and lots and lots of hugs.

Though I can still see that Brian needs certain cues before he'll correctly respond to something he is certainly not robotic. It was like this light bulb went off in his head and he realized- "I don't have to do everything my Mom tells me to do!". I joke this is not a good thing, life is certainly easier for everyone when he just does what he needs to do. I'm not going to lie- it makes our days longer and it requires much more patience when I have to pull a hiding Brian out from his blankets as he is laughing because he thinks it's funny that he just left his folded clothes in a pile in the hallway. But I can't help to see the positive in this. My son has his own personality, he's not a robot, and he's (at this moment) just like a typical child.



I want so many things for Brian and I hope this lesson he's learned- that he has the freedom of choice- is something he remembers throughout his lifetime.

Happy Fourth of July everyone!

Learning Acceptance

Grieving is a process that includes shock, denial, anger, pining and reminiscence, and acceptance. Many people go through these steps in situations like losing a loved one or losing a job. There is usually a feeling of "the end" in these situations, it's over, it's final in your mind, and hopefully usually you can move on after completing these steps.

There is a widely accepted theory on the grief process of parents with children with special-needs. It's called The Chronic-Sorrow Theory. Sounds delightful, doesn't it? Basically this theory states that the typical stages of grief do not apply to us. Sure we have those stages but not in any particular order and they don't go away after we've dealt with them once, twice, or ten times. It's a constant flux of these stages and we may never truly accept the situation. Why? Well it's simply because our source of grief is always a concrete presence in our lives.

Now I hate to refer to my son as grief, because I never ever think of him that way. But it's always in the back of my mind that the child I had planned for and the future I had hoped for disappeared a few years ago.

I'm rambling on about this because I came across pictures of Brian playing on Corbin's soccer team last year. Brian had just started kindergarten and I wanted him to have all of the same opportunities Corbin and every other child had. I wasn't going to let his ASD stop him from being just the same as every other kid. I thought I was doing him a real service.


We did one game. It wasn't that he had a tantrum or hated it, it was just that when I finally coerced him to get on the field he just ran in circles and didn't seem to even notice or care that there were other kids or a ball on the field. I realize  that 5-7 year olds playing soccer do not usually contain much athletic ability, and it's not that, it was just that he was seriously not aware of anyone else out there but himself. He was smiling, I don't think he hated it, but he would've been just as happy running in the empty field right next to the one being played on.

This is during the actual game- the ball and other kids are on the opposite side of the field.

I thought about it later and really asked myself- "Who am I doing this for?" Because I was really starting to think I was doing it for myself. I wanted him to be "normal". I wanted to prove that he was just as "good" as any other child. I wanted others to not look at him like he couldn't do something. Yet I really just drew more attention to his deficits.

Did Brian want to play soccer? Geesh, I never really asked him. I always ask Corbin and never make him play a sport or do any after-school activity unless he makes that commitment. Did Brian care if he wasn't included on a sports team? I hardly doubt it.

I needed to realize that I have to accept Brian as he is, the beautiful, happy, silly boy that he is. I needed to realize he wasn't Corbin. Brian didn't need to be accepted by others to be happy and I shouldn't need that either.

Squeeze Me

Brian had begun to lose his attentiveness and I asked the psychologist if it was okay if he sat on my lap while we tried to do a few more. It worked, as I thought it would. She was showing him six pictures at a time of actions and asking him to point to what she asked. We came to the word "squeeze" and the picture that he was suppose to point to was a hand squeezing a sponge. I didn't think he'd get it.

She repeated "Squeeze" to him after he didn't respond the first time. He took both my hands and placed them on his side and said "squeeze!". Sometimes, things so small, just take my breath away. He loves to be squeezed and I always ask him, when he's starting to melt down, if he needs a squeeze but he has never used the word himself.

Then to make it even better she said it one more time and he DID point to the hand squeezing the sponge.

all in a day's work

Today we traveled an hour and a half for a professional to tell us Brian has autism, again. That mandatory re-evaluation you need to have to make sure he keeps on receiving his services.

It was an eventful day.

First it was the first time I sat in on an IQ test. The only other one he had was done at school and I was unable to get out of work to attend it. I was furious when I received a letter in the mail that said my child was "mentally retarded". I was mad that no meeting had been set up to explain this to me, I was upset that he was being labeled with this when I just knew in my heart that there was no way they captured his full potential. I've come to terms with the fact that no IQ test can fairly measure a non-verbal autistic child, in my opinion.

Today I was happy that the psychologist would let me ask the questions as well as long as I said them in the "standardized" way. It helped as he would sometimes respond to me when he previously wouldn't respond to her. I saw Brian answer some things I didn't think he could and completely ignore things I was positive he knew. I watched him deteriorate and at the end purposely stare at the ceiling, the floor, the window- anywhere that wasn't the table with the testing tools set up.

The psychologist is going to recommend that her program's consultation team go to our school. They go to the schools of their clients and help educate and set up a program specifically to the child. Our school district and Brian are both in desperate need of this service and it gives me a little hope that next year will be better than our last.

One part of the testing today was for me to fill out a standardized test, well I actually filled out three, but let's just talk about this one. Of course I can't remember the name of the test- that would call for an actual working memory. But it wasn't about Brian so much, it was about me, as a parent, and how I was "coping" with Brian. I didn't care for the wording. For example, "Is raising your child more difficult than you imagined before he was born?". Well I certainly didn't imagine I was going to have a child with autism, so yes, but I really (most of the time) don't find it difficult. I know that might sound weird, but this is just us now, and I have accepted it and I enjoy our family very much. Other questions asked if I sometimes resented my child, if I found it hard to make a connection with my child, I believe it even referred to my child as a "problem" at one point.

I know that parents have a hard time with children that have behaviors and our mental health can be fragile and it needs to be taken care of so we can in turn care for our children. I know that when Brian gets older that I may just have a harder time handling behaviors and feel inadequate if I can't keep him safe from himself. But at this point in time I didn't enjoy answering questions that just seemed so negative in their connotations.

At the end of the day Brian played in the playroom with our case manager while I sat in and talked one-on-one with the psychologist and I let loose about what we've gone through and where we are now. I weirdly cried a little when talking about Brian as a baby, I say weirdly because I haven't done that in a long time. The comment that stuck with me today was, "You have a lifetime of this. He's only just six." Wow, I've heard that a lot, I have started to accept it, but still every time I hear it my heart pauses for a second and I try to imagine it and I can't.

What a lot of rambling I've done tonight, this is just a clear representation of my brain and it how it works.