Wednesday, September 29, 2010

Asperger's the new black

Since even mentioning "Asperger's" and the possibility that SR could be diagnosed with it, more than 3 years ago, the diagnosis has become more prevalent. And the following things I will say, are more than likely going to offend some folks, but frankly I have been offended at things said, and comments sent over the past few years. Which is probably the reason I stepped away from blogging for so long. However I think I am to the point where if your comment bothers me, I do not have to publish it, or if I do publish it I can ignore it.

We have made progress, SR no longer has obsessive behaviors that rule the home, as he did when 12 months to 3 years of age. These are resolved. SR no longer needs all clothes stripped free of tags. SR has not had to leave a public restaurant because of noise for 3 years. In fact he sang in a microphone in a very loud pub downtown, with a band, and sat through many practices in a small studio with children that played horribly. SR no longer hand flaps as a primary stimming activity, most of the time he does not need a stimming activity. Now he will hum once in a while, repeat a catch phrase for a much shorter time, hop, and rarely flaps. I no longer have to warn him every single time we transition from one thing to the next. He can ride a bike, tie his shoes...both which were hard for him. He does not need reminders for simple activities of daily living.

That is a list most folks do not have to make, or think could be solved with better parenting, or early intervention. SR worked hard to get past all of these things, along with DH and I, who tried to provide him with a sensory diet, and exposure to new experiences etc. Trying to figure out the way to our child. A map to his heart if you will. SR gets most credit for doing things that made him uncomfortable, which is really courageous.

The problem with getting him "diagnosed" as I see it, I am not sure what benefit he will see from it. There is no cure. People are lazy and like taking the shortest way on the map to him, even if it ends in disaster. Part of the reason we are having to look at a real diagnosis now, there is a huge gap between SR and his peers. Academically, he is sound, philosophically he has big questions, and tries to answer them and rethink them. Emotionally, he is quite immature, he hits hyperarrousal quickly on days when he is being pushed to frustration. This is happening a lot this year. Simple things like taking a break, some deep breaths, a walk away will help when implemented. He does frustrate easily, and I am guessing this is partially because academics has always come easy for him, and he is not used to working hard. Hard work or challenging work intrests him, but there is a is not always there, some days it is short, other days it is not noticable . In good news he can TELL us when he is done. He has no problem telling folks, I am overwhelmed right now. People are not listening as good as they should be.

In this day and age there is more material on teaching children with Aspberger's than there is regular children.

So now I am struggling with this...ok we might have a diagnosis now what? It only helps if people know what to do. I am one of those that is going to say his diagnosis is more for those outside of the home than for him at this point.

Prayers again if you will we are headed for a testing session tomorrow.

Tuesday, September 28, 2010

the fence

and all of that.

DH and I manged a loverly date, we went out for sushi. I was surprised so many women in their 40's show up for girls night at sushi looking like hookers. But whatever. Put some clothes on please. I am trying to figure out why grown women let their girls out when dining with girlfriends.

WE then went to the movie Get Low with Bobby Duvall, a story about loss, and redemption, and punishing ones self over bad choices. It was good. A nice escape was had by all.

Allergy testing results came back as negative. Which is what it is. I am still going to monitor gluten, because he could be sensitive, and we will watch. thyroid functioning is good, Complete Metabolic profile was all within normal limits. I should be jumping up and down, but I will say I am torn. This would be easier if we could fix something.

We started DHA/omegas nordic naturals 3-6-9, 2 in the morning, 2 at night, and noticed a difference. We also started melatonin low dose at night, because frankly SR would rather sit up until midnight reading science books, and wants to feed his brain at night, because he is not getting all he wants at school. The kiddo needs rest. He performs better when rested.

I am also dealing with a child who is anxious over the school year because of the classroom. I will not go into too much detail because it will appear as though I am pointing fingers. I am not.

I will say, there is a way to deal with SR and a way not to. Because of what likely appears to be Asperger's, he needs low arousal approach, he does not need a hyper reactive approach. Teaching SR also requires a high amount of flexibility.

Flexibility is something humans really do not like for the most part, we like a list, and like things to go our way, and the minute things veer off....most folks do not like that. Teachers that teach for 27 years REALLY do not like it. People that have not really spent much time around these kiddos, do not realize they are quarkey. REally quarkey.

Anywho, we keep pushing, and pulling, and meanwhile SR, is starting to begin to dislike parts of his school day.

I did get notes from teachers last week about how tremendous he was one day. It is one day. But heck I want to frame the damn emails, and notes at this point....

Say a prayer. We go back to the pysch Dr. Thursday for an adaptive reasoning test. How exciting, at this rate we might know something in 2 months.

Friday, September 24, 2010

By the time friday rolls around...

I will admit I am done. Unsure if it is my age, the week, the over thinking, but seriously I am done. If I could find a way to turn off my brain, soak, and have a drink of wine I think I might be ok. that is not motherhood though, it is continuous.

Tonight DH and I are hitting the town, perhaps dinner, drinks, and a movie...we have had date night 2 times since April. He too is exhausted by the time Friday gets here.

SR had 3 good days this week, 1 day of recovery, and 1 bad day. It is what it is at this point. Right now it is school, it is exhausting to him. Once he knows what to expect, normally it is good, but he is slow to adjust, and for some reason it is not being realized. The bad thing about being sooo high functioning 90% of the time, is that when you are having one of your 10% days, people think you are being a spoiled brat, and can control we wish. How he wishes. He expresses to me almost every 48 hours how he WISHES he was normal, and how he wished God created him differently. Right now he is in the middle of some sort of existential crises. Which is sad, seeing that he is only 8.

I have had to become queen of the pep talk, the queen of silver linings. The pep talks, and encouragement lasting hours.

The one thing he is proud of is his intelligence and grasp of concepts, but in our society this is not really allowed to be celebrated. No I do not want an arrogant child. But while everyone is celebrating soccer, baseball trophies, there are visible belts that are earned in karate as you master skills, and he sits on the outside.....unable to celebrate that he is brilliant, well it is sorta sad, and as his Mother it is frustrating. WE cannot tell anyone about his academic accomplishments, because it looks like we are bragging, and creating a monster.

He still cannot compete in any sort of team events, he does not understand social dynamics all of the time, he is also prone to perfection, even though we have not pushed him in that direction. It is typical for what we believe is ailing him. He is not only a perfectionist, but a people pleaser. A dangerous combination.

the other day I went to the GP, he went ahead and ran the tests I requested, and he looked at me sad, our GP and our family have grown attached to one another. He looked at me, like a Father with sadness. Like he wanted to say.."I wish I could fix this". "I will test for whatever you want, you have done your research, he is your child, Mothers know things"....

whatever it is, it is. It is not new. WE have been working and doing for 8 years. We have made progress in this time too. All of us. I have learned patience, and empathy for other parents with children that struggle. So the "welcome to the club" crap is getting old. It is not a new club, they are just giving us our secret t-shirts now. We have been in the club....

Tonight I escape my reality

Monday, September 20, 2010

No I am not DEAD

I just pretend to be on my blog.

Last time I blogged here, school was just letting out. Summer came and went, the kids keep growing. PN's feet are exponentially bigger......

and then there is the continuing saga of SR.

We are currently looking at the real possibility of food allergies, or sensativities. One of those being gluten, which I have successfully removed from his diet. Something I had thought about 6 times, and resisted because of the overwhelming anxiety re: oh my lands gluten is in EVERYTHING. He has been gluten free for around 2 weeks with some improvement noted in his keratosis pilaris, behaviors, and sleeping habits. I also added Nordic naturals Omega 3-6-9, with noted improvement.

Tomorrow we head to the GP to request parasite tests for stools, magnesuim levels, b levels, a referral to an immunologist, and and endocrinologist. I get to be "that nutty Mom @ the Dr. tomorrow". We are also actively at a psychologists office, who is trying to determine where on the spectrum, and if SR is on the spectrum.

This is all a painful, and tedious process. SR is frustrated beyond belief, being profoundly gifted comes with its own issues, it is not all rainbows and unicorns, as some would think.

I also realize SR problems are not life threatening at this time, and there are many families that would wish for our current situation.

Wish me luck and say a prayer tomorrow, that I am heard, and I am able to advocate for my son. I want him to enjoy being SR.