Struggles with Aspergers

Yesterday seemed to never end.
It started pretty normal - I went to the grocery store to satisfy my new coupon obsession (it was double coupon day), picked up the new b&b wholesale packets and stopped to pick up a couple prescriptions at Target. Butters slept in a little yesterday morning, so my intentions were to only put him down for one nap as opposed to his normal two.
This idea didn't work out in my favor.
After two bouts of screaming, I realized that neither of us was going to be getting our much needed afternoon siesta. Crabby baby, crabby Mama.
Then Logan got home, and this already touchy situation was exasperated by his math test (53%) and a language arts project (C). THEN, I had the pleasure of reading the evaluations for his upcoming IEP meeting next week. This was the last piece that our already slightly off-balance house needed to tip.
Now this little tidbit needs a little background info. For those of you unfamiliar with the term "IEP", this is an Individualized Education Plan. It lays out a plan for all of the extra things Logan needs to get through his day, any services (speech, etc), and basically discusses his progress and shortfalls. The IEPs done every three years (which is the one that needs to be done) include several tests, psychological and educational, issued by his teachers and the school psychologist.
Back to the story, I read through pages of other people's evaluation of where my child was at. His teachers had comments such as "makes actions or comments that hinder peer acceptance", and "gets distracted during transitions", and "has a difficult time focusing in class".
I've seen the homework Logan hands in, and its not so good. I will help him, but I will absolutely not do it FOR him. I will only help him within a realm he is able to understand. He has a very difficult time writing papers. His paragraphs are limited to three sentences - he does the very minimum required to get by. It is far below the work of his peers. He struggles with both math and science concepts and often fails his tests. However, his grades are B's and C's...I really feel like he gets pushed through because teachers often don't want to deal with him.
He doesn't have the peer relationships that most children his age have. This is typical of children with Asperger's. Although he is 11, he has the social maturity of probably a six or seven year old. I have a very hard time going to school events with him and watching him attempt to interact with other kids his age, and seeing them react with distaste and annoyance. He is often ignored.
Last night I struggled for probably the zillionth time with what to do. Putting him in a private school isn't the answer - they are more academically demanding and do not have the extra services necessary for him to succeed. Holding him back a year would be difficult at his age (I brought this up last night and he freaked out).
So, this morning I had to work on finding answers. I'm not sure if the answer is pushing the school district, but I contacted the State of Minnesota's Autism Specialist to see if I can push for him to have a para with him all day (which I've asked for on several occasions but the school has denied). I contacted the one private school in Minnesota that specializes in special needs children - that comes with a tuition of over $21,000 per year. I'm Googling any possible school in our area that may have an Autism program. I've contacted the doctor that did his Asperger's diagnosis to see if he can give further recommendations to the school staff in writing to back up everything I'm asking for.
Where this will go from here, I don't know yet, but I'm willing to do whatever it takes.

ASD - Atrial Septal Defect

So today's focus has been Butters. He's been coughing off and on for about a week, and with his ASD (Atrial Septal Defect - a little hole in one of his heart valves) this can be indicative of a problem with his baby heart. I took him to the doctor this morning, and sure enough there is some fluid built up in his lungs - a sign that blood is possibly leaking from his heart into his lungs through this little hole. No good. When we first saw the pediatric cardiologist back in July, they had said that we need to watch him closely over his first winter for pneumonia and other lung issues, and if he had them they may do the surgery to close the hole.
Now, this didn't really scare me at first. They explained that they use a scope that goes in through one of the veins in the hip and insert a small plastic piece over the hole to close it. However, my accountant of all people put the fear of God into me. During one of our meetings, I found out his son died when he was only three years old. To make matters worse, he died having the surgery to fix his ASD. OMFG. It took everything I had not to break down in tears in his office. Hearing a story about ANYONE losing a child at such a young age is terribly sad and makes me tear up to begin with, but hearing a story about someone losing a child due to a problem that MY child has makes me want to lose it completely.
When I first found out Jax had ASD, I found it ironic that Logan has the OTHER ASD (Autism Spectrum Disorder). So, I have two ASD kids with two different ASD's.

Where to even start...

On a personal note or a professional note? The professional side is fairly fun and light-hearted, so we'll start there.

Everyone will be here at 3:00 (T-minus 2 and a half hours) to start cutting the organics. We've already started the upcycled items, which I am SO looking forward to, but the organics are the big dog of our business. Elizabeth should have some sample herringbone dresses put together for me today, so I am absolutely STOKED to see them. I'm going to try to get a model over to the house so we can take some pictures and post them on FB and Twitter. It'll probably be a long night...we have over 200 pieces to cut.

Personal side is a bit harder to discuss. Butters' echo didn't come back positively. He has a small hole in one of the valves in his heart. It's called ASD, and is apparently fairly common and often heals itself over time, however it is obviously scary from my standpoint. We moved him back into our room last night - just more comfortable for me. Shed some tears yesterday, but try to think about the aspect that it is normally not a huge deal, and normally something that corrects itself. It also sounds though, like often they DO patch the hole through open heart surgery to prevent later problems. We see the Cardiologist on the 23rd and will find out more then.

http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Atrial-Septal-Defect-ASD_UCM_307021_Article.jsp