I know it's been almost centuries since blogging.
The doctor we found ended up not being a great fit for poor little Eli to say the least. he was drug through medications one of which he was allergic to. My Birthday was the 11th, and on the 10th my sweet Grandma passed away. The 14th on Valentines Day I took Eli to the hospital for evaluation because of severe aggression, tantrums, and extremely bad sensory issues. It was so bad.... I just cried and cried. Michael had work, and LaVonne my Mother in law was helping with Carter because he could no longer have been home at that point.
Coming home to an empty house, leaving my child behind in a clinic, being given strict visiting hours, and a message that my Grandmothers funeral was that late morning the same time I was saying goodbye to my son was enough. I felt so empty, like a bleeding daggered heart trying to pump what life I could manage to bring back into me. But my sweet husband left flowers on the table and a note for VDay. I knew that we had to be strong for each other. I usually can. This time, I feel I fell short. Eli stayed until the following Sunday.
He had regressed. The day before bringing him home we purchased a video camera with some of our tax return and started filming video of him to keep track of what was going on. That's how we found the severe aggression fits due to one of medications. We called and demanded him to be taken off the medication. They lowered his dose.
Last weekend we went to our children's Hospital because Eli was having bad episodes again and they told us we could take him off completely. They had someone come in from Liberty, MO to talk and try to help us because they had no idea how to handle Eli's situation. Insane right??!!!! This guy said that they were sorry that there was nothing else to do because of the huge wait lists for services, and that the world is just not equipped to handle children with Autism yet. He then proceeded to say that he is so thankful for his two "normal children" and can't wait to go home and hug them.
Yes, I wanted to choke him. Okay more then just that. He was an idiot.
Our church has been really there for us and it feels wonderful to have that. I take Eli back to his Pediatrician on Monday.
Wow, I know that was a lot, I tried to sum it up for you as much as possible. I just haven't been ready to share or talk about anything because I had some healing to do which I know all the prayers for our family is what has helped us the most.
But, Things are looking up a little hopefully. Michael and I figured a way for me to work with Eli at least through the summer and a great Preschool for Carter who absolutely loves going! (This week he went two days for the first time!)
I will write more about the family later like Michael's shift change, Carter's preschool, and some of my great findings with Eli that hopefully will and already have started to make him a happier boy.
Tonight: Eli and Carter enjoyed watching "WIPEOUT" with me. The only show I can get them to sit with me!=)
It's funny, I always feel like I'm not doing enough, but you're right, there just aren't enough services available. We read about them and see them on TV, they're out there somewhere... Where? How do people afford them? How long does it take to get an appointment? One of the autism groups posted a blog this week where an autism mom talked about having symptoms of PTSD. I was shocked at how true that is, and surprised I had never thought of that before. Another page posted a story about marriages with autistic children, and also mentioned how the mothers end up with PTSD-like symptoms. Some days I cry a lot, some days I just want to scream for a while. I pray every day that I am enough, that I can make enough of a difference and some how take the place of all therapies we don't have access to. You know, above all, our kids need love, and we definitely have that covered! Hang in there, I know it is so hard, and some days you don't know how you'll get through another day. There are good days too, usually right after the worst ones. I hope Eli can find a medication that works well for him. We had some aggression with Strattera,I remember how awful it was!
ReplyDeleteI completely agree with you Megan! The sad thing is that since Autism is such an epidemic, there is money to be made and it makes me furious to even type it but in a sense I feel this to be true. I mean seriously, do you need $55-$110/hour to teach some ABA???? Or, even better the answer, "Oh we take cash or maybe your school will pay for your child to come here." And I sure don't think it far off for a Mother of a child with Autism to be diagnosed with PTSD. Literally, it is traumatic, and severely stressful. Do you have the link to where you found that?
ReplyDeleteI will tell you that I cry a lot to. I try not to show to much ever, but when I go to bed at night.... it's over and I'm a mess.
But truth be told, no one loves our children more then we do. All I can keep thinking about is that God chose me and he knows what he is doing even though I haven't a clue most times. Tonight was a good evening. I got to sing my little boy to sleep and he was smiling. It's been a while since I have seen that. I will go to be tonight with his sweet little face burned into my mind.