Transition

A month ago I posted this update.  I hadn't heard anything and was worried that this was going to be yet another debacle with this school district. I started leaving messages with the superintendent and the advocate.     The superintendent called tonight and after apologizing profusely for letting the ball drop, he started talking about the next 3 weeks.

The principal at the school Drew will be going to was just promoted.  That threw a monkey wrench in things.  We all want the principal who will be at the school to be involved in this transition.  The current principal will be over 10 schools, including the one Drew will be attending. The VP may be promoted to principal so she would be another possibility to oversee the the transition.  The third option presented to wait till the principal is named in the next couple weeks.  NOT AN OPTION.  There are only 5 weeks of school left and I will be gone one of those weeks.  (rough life having to go to WDW for training)

I did feel good that he wanted the new school totally educated about TS. He has done his research and now understands that there are probably many in the district who have this that they are not aware of.  If 1 in 1000 suffer from some form of TS than Drew is not alone. He did admit they don't have an educational program in place for teachers let alone kids to understand TS. Everyone knows ADHD, Autism  and so many other challenges.  But very few understand TS.

The superintendent was going to send out emails tonight to all team members and by Thursday have a plan in place to meet with the current principal of the new school, VP and new principal( if one has been named) Then the psychologist and IEP case manager from the new school will go observe Drew and meet with the team at his current school. Then, Drew will visit the new school a couple times to meet teachers and kids.  After all of that we will have a HUGE meeting with the team from both schools to finalize the IEP (again).  there will also be education for the staff at the new school of all of the parts of TS.  All of this before May 11. I am tired just typing it, let alone living it. At some point there will also be education for the students. I am assuming that will be next school year.

The rough part will be telling Drew.  He has had so much change in the last year and has just begun to settle in. The superintendent has assured me they have done this many times and most kids settle in well.  I have been rehearsing all of the positives for Drew so when we tell him, we can excite him about the change.

In other new - Drew got his CPAP today.  Anxious to see how he feels in a couple days after getting good sleep.

Mother nature is still menopausal.  We got  9 inches of snow yesterday and 4 more coming tomorrow night.  At least it got above freezing today to get rid of most of what was received yesterday.

Drew got a freestanding basketball hoop this past weekend. A neighbor decided to get rid of theirs since their daughters no longer used it.  Great purchase for 30.00.

Another Tuesday

Drew is at school. Scott is at work. I am at home. I have been weighing my options as to what I could do today. I think some washing of sheets is in store for me. May be washing a couple dishes. Then I plan on knitting and maybe some online retail therapy.

Drew this morning was listening to a song and to give you an example of how his mind works - the lyrics were "she's a good bass fisher and an dynamite kisser...." Drew looked at me and asked "why would anyone want to kiss dynamite?"

I am taking a class right now on moral and social ethics. in his world everything is black and white. But when talking about morals there are many grey areas. I am still trying to help him understand Ethics on an 8 year old asperger level. All I can say is it is not easy.

may be getting somewhere with school

Today I am thankful for the new program specialist that will be working with us to place Drew in the proper place in the public school system. She took the time yesterday to meet Drew and I at his favorite park. She wanted to observe him. She did get to witness a melt down which was nice. She has some good ideas on what is best for him and I agree with her on just about everything. We have the official IEP on Friday morning where everything will be decided.

They are offering at home tutoring until after the first of the year. Then he will be starting in an ED class with increasing time over several weeks so he can adjust. I think he will be placed in the 3rd/4th ED class since he is 8 but only in second grade. that way he can be there for several years and know the routine instead of going to one school for 5 months then changing next year.

After fighting the school district for 2 years it was refreshing to meet someone who appeared to have Drew's interest at heart.

back again

The past few weeks have been HELL. I have been in pure survival mode. The docs tried Drew on a new med. It was causing rages every couple hours. It was crazy. Even he didn't understand. We couldn't get school work done. It was taking 2 hours to do 14 math problems. I was so ready to chuck everything in and send him back to school and make it their problem. I hated being around my son and I hated myself for it. How could I not like being around my son. He was saying totally hateful things and I didn't know where to turn.

Monday I called his neurologist and told them we had to take him off the Depakote because it was going to be me or him. They got me an emergency appt for Tuesday afternoon. I didn't give him his Depakote on Tuesday because Scott was out of town and I knew I could't take it.

When we got to the appt. Dr. Rainia came to the waiting room personally to get him. We went into a conference room with 2 med students. We reviewed Drew's history and Dr. Rainia noted that all the meds we tried had had the opposite effect. Respirdal caused depression (it is a anti depressent) Abilify was to improve the Tourette's - it made it worse.

He went on to explain to the med students that with kids like Drew who had the opposite effect on meds that they had to think outside the box. He explained to all of us that by accident he had discovered a drug for Parkinson's and Restless leg Syndrome that worked in about 50% of kids. Was I willing to try. HELL YES!!!! I knew I couldn't take anymore of what had been going on.

Drew took his first dose Tuesday night. Wed he got up and got dressed, did 3 hours worth of school work without fight. Went on a play date and there were no arguments the whole time. CAme home ate dinner, took his bath, never balked or fought back when told no. NO rages . he was amazing. took another dose last night. same thing today. Did his work (it was a short day because of getting ready to camping this weekend) didn't get upset when he made a mistake on his spelling test. He caught hte mistake and corrected it. He didn't get upset when he only got a 99 because he forgot the E on "have" in his dictation. he even took out the recycling with out being asked!!!! He even told me he loved me. I haven't heard that in a long time.

He has been pretty hyper but I am not sure if that is because now that his mind is clear so much is racing that he can't keep up or because we haven't started the daytime dose - that starts tomorrow in addition to the night time dose.

I keep waiting for the other shoe to drop. But if this works, I will be eternally grateful. The past 2 days have been amazing. I hope they keep up. I will keep you posted.

been very neglectful

Yes I know. everyday I log into follow everyone else but don't seem to find time to update my own blog.

Where to start?

Scott came through surgery fine. 3 more weeks and he should be able to drive as well a get back on his bike. He is walking everyday and is very happy to be maintaining weight. He is still working from home and appears to be happy doing so. I love it most days.

Phil and Betsy are still dating. Phil told me the other day he had been named to the Greek National Honor Society. Not bad. He is doing better and better every semester.

Drew has offically been diagnosed with Autism. Not a shock but still felt like a kick in the ASS when the told us. They have said it is EXTREMELY high functioning autism but still autism just the same. He is doing remarkably well being homeschooled. We all like it. He is finally reading. I love Hooked on Phonics. It is a god send. We start Math U See after Spring Break and I am hoping Andrew is as successful at that.

I am starting to sell Tastefully Simple. I went to a party a few weeks ago and fell in love with the products. Every time I mentioned to a friend that I was having a TS party they all said "make sure you invite me" or "send me the link I need to order some stuff" That got me to thinking. Why shouldn't I profit from this?

I love being a SAHM. But I never have felt like I have contributed enough. I know I contribute by parenting the kids, taking care of bills, cleaning house, supporting Scott, etc but I always feel like I should be contributing monetarily. Infact while I was typing this TS called and gave me my consultant number so my site will be up and running shortly.

My dad was here last weekend and we had a wonderful visit. Like he says great to see them come - great to see them leave.

Oh the big news it that we are planning a trip back to Disney World for December/Jan of this coming year!!!

I promise to pay more attention to my blog and update soon.