Living with Autism

Well a pretty uneventful weekend.. My kids were at their dad's but come home in less than 2 hours.. I can't wait. I hate it when their gone. Rissa played her last Little Dribblers Basketball games yesterday. I am very proud of her. She did great.

I took off work tomorrow to stay home with Slade. He has to have some dental work, which means that he has to be sedated, with valium & nitrous. It works great for about the first 20 minutes, then he becomes very aggitated  & almost impossible to work with. I never could figure out why until the nurse for his MRI said that sedatives work different in people with Autism, & alot of times cause them to be aggitated. It all made sense then! It is so stressful when he has to have dental work. We've been thru all of this about 4 times before, but he grits his teeth when he gets stressed & has undone all of the work we had done. He cries & fights against us so hard when the dentist is working. I end up crying too. It's just so stressful & sad.. Praying the sedation works this time.
Angela

We had Slade's ARD meeting today. ARD meetings are when the parent(s) get together with the teachers, therapists, Spec Ed Diagnostian, etc, & meet on the child's IEP, which is an Individual Education Plan. When a child is in Spec Ed they don't have to get certain grades in order to pass or graduate. They only have to meet certain goals that the ARD team sets. Once those goals are achieved, we meet & set new ones. In this case we had to meet to actually change his placment, from Gen Ed to Spec Ed for his core subjects.

It was an ok meeting considering the circumstances. I got to hear some positive things about Slade's progress that I hadn't heard before, which was wonderful. BUT it always seems that the negative things outweigh the positives. As usual I cried because it is all so hard to hear. I always leave those meetings feeling so beat up & mentally & emotionally exhausted. They go around the table telling you things about your child that are so hard to hear. It feels like an attack, & as a parent your first instinct is to go into defense mode. But then you remember that you are the parent of a Special Needs child, & you have to swallow your pride & realize that what they are saying is true. It is absolutly heart wrenching to sit there for that hour. I want so much for him to excel so much that he no longer needs Spec Ed help, but sometimes I feel like I am having to sit there & watch "Mainstreaming" slipping further & further away. I am just so sad.

Very discouraged & disheartened today. Exhausted. A special thanks tho to my husband for being there with me & for me today for the meeting. It is so nice to not have to face that alone anymore.

Finally started the blog that I was supposed to start a few years ago! We will try to update it often.

Email I sent out earlier today:

I know that I promised updates on Slade. Sorry that it took me so long. I am considering starting a little blog for him (in my spare time) that way I can update it a couple of days a week, on progress, regressions, appointments, new prayer needs, etc... I will let you all know when I do. I just have to find a site that does it. Thank you all for your continued prayers.   The MRI came back the same as the one done at Texas Children's when he was 2. There were no tumors or lesions, Praise God.  He has regressed so far back that he is even having problems with wetting on himself. It is so sad. Socially he is still somewhat ok. He still plays well with his friends, he just doesn't like for it to get loud or rowdy. At school we meet tomorrow to officially pull him out of his half a day Gen Ed & put him back in Special Ed full time. He is crying nonstop at school & getting frustrated so easily. He is very insecure & will hardly let me out of his sight. We have lost about 2 years of progress. His Specialist changed his medicines a bit to try to help, then on Monday he had a reaction to the new med dose & we had to take him off, so he is back on the old meds now.   We started seeing a Christian counselor yesterday, on top of all the other doctors I take him too. I am very optimistic about this tho, because he is a family friend so Slade is comfortable with him & will actually talk to him. We are trying to help him find other ways to deal with the frustration & insecurities.. I think this will help. I also found a stable that does therapy with horses for children with special needs. I called them & it would cost about $300 a session, but once I told them some things about Slade they offered me a grant for him which will cover all of their services! I am so excited about that. His new counselor can also go with him & do his therapy there too, with the horses. For the time being he will see the therapist weekly.   Donald & I hired a lawyer to file a medical malpractice suit against my obgyn for some things that he did during delivery that caused Slade's brain damage. The lawyers seem to think we have a good case. If we receive a settlement, it will go into a trust fund for Slade. The court will issue us a monthly allowance, that will hopfully allow me to either quit my job or work part time that way I can spend my days taking Slade from place to place so that he can get the best help possible. It is so hard right now missing so much work, & still paying for all the appointments, medicine, etc. BUT it is so worth it. He is such a wonderful little boy. I am praying tho that God sends something my way that will allow me financially to be able to spend more time at home taking care of him.   In the car the other day I told him about the new counselor & he said, "Will he fix me mommy?" Of course I burst into tears & told him that he wasn't broken & that I love him just the way he is. I told him the new doc is going to help him feel better, and he liked that answer.   Thanks again for all the prayers. Please continue to pray for God's mercy on my little angel.   Angela