Oh my head is about to explode tonight! Yesterday and today have been AWFUL to say the least with Sam at home, during ABA therapy and at the pediatrician's office today. I've been banging my head trying to figure out what's going on (probably why my head hurts)! Everyone hears and sees the excellent progress he's made this year. His vocabulary has EXPLODED! He's talking in full sentences, has excellent imaginary play, great social interaction with peers, wonderful eye contact, using the potty before bath every night and is finally sleeping through the nights for almost two weeks. So what's the problem you're thinking? It's what most do not see or hear the whole story about. With progression always comes regression and lots of it for Sam! The last few weeks he's very clingy and attached to mommy again. During home therapy, private speech, even when Nana is visiting or the sitter is coming all we hear is "don't leave me. Stay with me. I want to see mama" and so on. Steve and I did do an overnight away 2 weeks ago but I think this started before that night. Maybe it's from some major changes this summer. His summer school teachers are all new as well as a new bus driver. He seemed to adjust well to these changes. But we had to get a summer sitter to get him of the bus the 4 days he has school and to be with him sometimes on the 5th day until Mommy gets home from work. He seemed fine with this as well. We had one sitter for a month but she broke her foot and it got worse so this Monday we had another sitter take over. He's met her three times prior to this Monday. I told him the previous sitter couldn't come back and this other one was starting. He said he didn't want us to leave him and we shouldn't go to work. He seemed to get over this quickly and has had a good time with her so far this week. No problems. Come yesterday during ABA and he doesn't want to do any work for the therapist. This happened a little last week too but worse yesterday. He wouldn't sit down at the table and wanted me to be with him. After numerous "talks" I gave him a warning that if he didn't sit down in 2 minutes I would be going upstairs and closing the gate on the stairs behind me. We set the timer. 2 minutes came and he did not listen. I made my way to the stairs and he was not happy! I had the therapist help me close the gate and upstairs I went. He carried on, crying, screaming and yelling to open the gate. 20+ mins went by and I thought I heard his voice getting closer to me. Then I heard a door close upstairs. He got upstairs! During his rage of anger he pulled two wooden bars out of the gate at the bottom of the stairs. He came up the stairs and squeezed through the railing on the stairs which I can't believe he fit through! I was livid! I was so mad but couldn't even yell at him! I think I was in shock, disbelief, a mixture of feelings! How can my sweet and affectionate boy go from laughing and having fun one minute to a state of confusion where he can't communicate, doesn't know what he wants and only gets worse the more you talk to him or ask him questions? This is autism for you in it's finest! Right now I'm not a fan of autism! As another autism mom has recently said 'autism is like a roller coaster ride'. It sure is and this Momma does not like roller coasters. (to read this awesome mom's blog please visit http://anautisticmind.blogspot.com). I'm trying hard not to get down about it but truth is we have a long way to go with this thing!
It took me two hours to calm myself down last night from how much frustration I was feeling! He must be punished I thought! He can't go around breaking things when he's mad and angry! But punishment? I don't think he even understands that what he did was wrong. I told him how mad I was, that we don't break things when we are mad and what he did on the stairs was very dangerous...etc. he apologized and kept saying he wanted me because he was upset. Ok so we need to figure out a way to discipline and will be having a good talk with the ABA supervisor tomorrow.
Now today he had a 4 month follow up with his pediatrician who likes to see his patients with autism more often than just once a year. He was ok at first there. Next he wouldn't take his shoes off to get weighed or measured, hid under the examining room table when the nurse tried to take his blood pressure, kept trying to grab the stethoscope and other equipment that was left in the hallway, started yelling when I moved said items away, wouldn't stay in the room while we waited for the doctor and was carrying on more. We walked around the office until the good doctor was ready for us. Sam was happy to see the doc, got right up on the table for him but this only lasted for a few mins. Again began the behavior of wanting me to stand up, wanting me to hold him, pulling my arm, trying to block my face while I talked to the doctor. Sam opened the door of the room we were in but would start screaming again so the doc closed the door and told him of he screamed we had to close the door. We could leave it open if he had a calm voice. Few minutes went by and more screaming! Ahhhh! I updated the doctor with everything including his sleep, potty training, therapies and how hungry he's been. In the last 4 months he's gained 5 lbs! Today he was 45 lbs and 42 inches which I swear he was 42 inches back at his 4 year appt. We talked about how to decrease his Neocate splash and that he can have 3 (8 ox boxes) a day with water added in the cups. The doc said Sam has finally realized how good food is and that it doesn't make him sick anymore so that's partly why he is asking for more food and looking for it. He never did this before because he would always vomit and it took him a while to trust and like food. This made me sad to think about but it makes sense. We concluded our visit but not without more behavior. Will be going back in 4 mths for another follow-up. He's never had us come back 2 in a year like this. I'm glad he's being thorough and concerned but it also makes me more nervous for what he is watching for. After we left I told Sam we were not going to the playground and I stuck with it! He was not happy in the car. Wanted MORE MILK and the iPad! I could not reach the iPad while driving. He told me to pull over and stop for which I ignored him. For the next 2 miles home I heard repeatedly "stop. Stop. Stop. Stop. Stop". More autism! Ahhh! Mommy is ready for a meltdown! And more behaviors during therapy today!
Tomorrow is the last day of summer school session which I also wonder if that's even done him any good. Not crazy about the summer program at all! Thinking next year we will be doing a special needs camp!
Pheww...I think that's it! Thank you for reading, listening and learning more about autism. Please educate others and remember if you see a child upset when out and about in the community that the child may not be a brat but may be dealing with ugly autism! I've gotten quite the looks recently at a store and even at the pediatrician's office.
No comments:
Post a Comment