Back to the story....
Late summer of 2006 there was an article in our local paper about Asperger's that was very poorly done. So of course I wrote them and told them how bad it was and we were quickly asked if our family would be willing to have a reporter & photographer follow us for a month. What an experience that was. One of the best things they recorded was our experience at orientation for middle school. They had no idea that 'A' had any special needs, the guidance counselor even asked if we were at the right school! The elementary had not passed any of his information along and they were clueless. That entire school year was a battle, explaining to the special ed teacher that the novel she read about Autism wasn't as useful as she thought, having one of his teachers trigger a coughing spell that has taken 2 years to stop. Not a year I enjoyed.... but I did gain my Crazy Mom logo because of it! So there is a silver lining.
So now we fast forward 2.5 years to the present. 'A' is now in 7th grade, the middle of middle school, and much more socially aware than he's ever been. I see this as great progress for him, wanting his hair to look good to impress the pretty blond in his class is a new experience. At the same time he's also more aware of what they other kids are saying behind his back and sometimes to his face.
This school year alone he's had death threats left in his PE locker and "Smile, you're special" notes left in his regular locker. He's been attacked 4 times in a week at lunch, had his things stolen, his Science teacher was forced to leave the school after allegations arose, and decided that as long as he's not getting an 'F' his grades are fine. But over the last year or so he's been happier, less anxious, and not as prone to break downs as before.
He's also very notably going through puberty. He's grown 6 inches in 18 months, his voice has gotten a bit deeper, and we've had to renegotiate bathing terms more than once. But, as with other inhibitions and maturity, some levels have not kept up. It's nearly impossible to keep him from dancing naked in the hall between his room and the bath room at shower time. Instead we've gotten better at making sure no one else is in the hall way.
The school is still very limited in their understanding of him. Not once have they followed his IEP by transferring information to the new teachers he has each semester. His principal won't look me in the eye now and his guidance counselor is so panicked she's going to do something wrong that she's never done a thing. 'A' has his favorite speech therapist back this year though, and I'm sure that many of his improvements are thanks to her.
It stuns me sometimes when I look back over the last 14 years and see all that our family has done, been through, survived, and accomplished. I just hope the next 14 years are a little calmer!
The last 10 days was pretty harsh. My oldest turned 13! I can't believe I have a teenager! To make things worse, I was crazy enough to measure him.... 5'7"! Only 2 inches shorter than me. I'm certain he'll outgrow me by Christmas. My only wish is that he would mature as fast as he's growing. It's so hard to watch my tall gangly son act like a sugar wired 8 year old.
The second difficult thing was that I found out Tuesday that the company hosting my domain sold it to someone else. My website, my name, is gone. Five hard years of work to make it just what I wanted, making it profitable, spreading my name on the web, all of it is worthless. My domain name was my business name. All my business cards are null and void, the stickers on the windows of my van... are all advertising for someone else now. Chelbi's Creations is no longer mine.
So in the spirit of change I have started over. Streamlined, simplified, clarified. I have begun again with Chel Design. Talking with the hubby though, there is a very real chance I will be switching this all out again in the next month or so. We have been throwing around a business name practically since we were married, but never could make it fit anything. I think we've finally come to a place where our two creative talents have almost merged. Mine being the creative design of interiors, clothing, & logos and his being the creative design of portfolios, graphic flyers, & advertisements. We'll see where this next adventure leads.
We had known for a while that something was "different" but it took the kindly advice of our son's Speech Therapist to really open our eyes to what exactly was going on. Son A had been in speech and occupational therapy from age 4 to age 6. Due to frequent ear infections as an infant his speech was unclear and his balance was awful. We were also told he had sensory integration deficit and proprioception problems, but no one ever suggested what more could be done or what these really meant.
When he was 6 the Navy sent us to California where all therapy stopped. Since he was ahead of his class academically (he'd taught himself to read at 3 1/2) they didn't see the need for assistance. Besides that, they only had one therapist for the district which covered 8 schools in three counties. Thank goodness for understanding teachers that ignored his hopping in line and repetitive coughing. And so it was that therapy ceased and A regressed. Well, maybe regressed is too strong. I guess he just stopped progressing.
A turned 9 the Spring before we returned to Washington State, leaving the Navy and returning home to the Tri-Cities. Fourth grade wasn't horrible, but I could see him fitting in less and less. He was however back in speech. By the beginning of his fifth grade year I had begun fighting hard to get him help. He had been coughing since the age of 3 and nothing we had done had ever helped at all. He was having hysterical crying episodes at least once a week, his eye contact had gotten spottier, and he was not functioning motor wise at par with his peers.
His doctor and teacher suggested ADHD, for which he began medicated . After 3 months and 4 different meds he hallucinated at 6am one morning. Screaming, crying, piling furniture in front of his bedroom door to keep us out. It was very frightening. That's the day we stopped giving him medicine. It's also about the same time I stopped writing this blog.
We had him tested for food allergies and he came up positive for more than 25, not including all their sub-foods. It was at this same time that his that his Speech Therapist mentioned Asperger's Syndrome. Being computer crazy, I immediately looked it up online was overjoyed and somewhat overwhelmed by what I found. My son fit every one of the criteria... gross motor, eye contact, IQ, obsessiveness with a subject, it was all there. I was so excited! It had a name, I wasn't crazy and overprotective, something was really wrong! But it was Autism... why hadn't anyone mentioned Autism before? Why didn't I know more about Autism? How had I, and so many others, missed something that seemed so obvious to me.
It was February of 2006 before I was able to have him officially tested by a pediatric neuro-psychologist. And what she found stunned me even more. It wasn't just Asperger's, it was also Tourette's and tremors and low muscle tone on his left side and Sensory Integration Deficit and, and, and.... How had ALL of this been missed? We took him off all medication immediately and for the first time in 8 years he stopped coughing! Somthing he had been given Asthma meds, allergy meds, and a myriad of other things for turned out to be Tourette's.
A month later I left for 5th grade camp with him. I didn't realize until the second day of camp that I was not only still in denial but still in shock also. That was the day that his group went out to the woods to learn fire building. He spent the entire hour and a half 30 feet from the group hanging upside down over a log. Amazingly though, on the last night of camp they played a Jeopardy game and he answered every question about fire building correctly. He had heard it all, but he needed to be away from the group to process it. It was so hard for me to watch how truly separated he was from the other kids. I was amazed also, and extremely grateful, at how protective they were of him.
This was the beginning of the journey for us. A journey that has taken a few twists and is no where near finished, but has brought me closer to my children.
A sister of mine, one of many, mentioned recently that I need a place to vent. Being on my computer 2/3 of the day I immediately thought of blogging and then remembered that I used to have a blog. I hadn't realized just how long it's been since I've posted. Two and a half years. And what a wild chunk of time that has been.
In the last two and a half years my family has entered the worlds of Autism, Tourrette's, OCD, intense food allergies, and extreme Sensory Integration Disorder. We have also entered middle school, begun home schooling, and seen our youngest start school. We have changed vehicles twice, jobs 3 times, and all but completely halted remodeling on our home. We have gained 3 new cousins and are anxiously awaiting the arrivals of 3 more.
Yes, it's been an interesting time for us. Now I will attempt to fill in the gaps.
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