H had his first ECI appointment yesterday morning. Part of me was sort of hoping the report would be along the lines of "Lady you are crazy and your child is totally fine" I mean no parent wants their child to have anything wrong with them and it's always this fear that lingers in the back of their mind "what if something is wrong with my child?", "what would I do if something was wrong with my child?", and the big one "how do we cope and manage as a family if something is wrong with our child?" To me being proactive is of complete importance. I do not care how minor the issues might be if there is help available I want my children to have any and all of those opportunities.
Getting back to is first session yesterday. Staci came to observe him at school and for the most part it went well. The problems came mostly when they came in from outside. He loves the outdoors and I am pretty sure if we let him he would stay outside all day long! So when he came in he started to get aggressive and shoving kids hard into shelves etc. He also attempted to bite and this all appeared to be sensory related. She took some notes and gave some tips to his teacher to help the transition and the sensory issues. Carol is so patient with H and is glad to have all the help she can get working with H each day. I am hoping these things will help.
Staci called me that evening while I was out in Potosi to go over what she observed today and some ideas and things to bring up. Since H has shown oral sensory issues there are special devices out there designed specifically to help with this oral fixation. Sadly what he needs is 50.00 and while I am not going to put a price tag on my child's needs at the same time money has not been free flowing. They also suggested a small trampoline to help get his energy and aggression out in the morning, when we get home and in complicated transitions throughout the day at home. They suggest him, with the help of his teachers, jumping up and down when he encounters a difficult situation at school. To help with anxiety and meltdowns she suggested weighted items and bear hugs. We have his back back but the are suggesting something to use around the shoulders and middle body to balance it all out. We are now looking into vests and blankets.
Through just odd luck a friend Chris from back home who's 4 year old son that has been diagnosed with Autism, Sensory processing Disorder and ADD. They use the vests and blankets and say what a life saver they are! She has given me the information about the blankets because a lady custom made theirs. He has oral issues and are currently using the cheap store brand battery toothbrushes to help. Until we come into some money this might be the best route for us ha ha. I have been told by the trainers at the school that there is a website where I might find what he needs at a more reasonable price. I tried Amazon and that was a FAIL!
Today Becky, his coordinator came out to the house to go over stuff and help put things in order for us. We have a few road blocks right now but nothing major. It of course is a little discouraging but honestly I know we will get it all sorted out. We can apply online for CHIP, but of course this would not go without a hitch. His pedi takes two types of CHIP and his Pulmonologist takes a different one. We are not sure they both accept the same ones. As for Dr. Rogers in Lubbock we can't figure out which one she accepts so I will call tomorrow and figure that out. I have until Friday to get in touch with the lady at Early Head Start to get him on the list. ECI will be submitting his paper work to them this week. We need his birth certificate, which of course at the moment we do not have! I am hoping when I talk to this lady Friday we can do what we need to do and when we get it just give her a copy. If not we have to wait until July to register him at the Civic Center. Blah not hoping it comes to that! To get an appointment with Dr. Rogers we have to go get a referral through our pedi and then she will submit it and they will set up the appointment. It's mostly a lot of leg work but we will get it done.
We are about a week away from his first appointment with the Pulmonologist in Ft. Worth. It will be at 9am so that should be a long interesting day for all of us. The bonus is we will have the kids coming back to Abilene with us! I can not wait for them to be here for the summer. Tonight Hannah is performing in her school's talent show. Myranda sent me the video of it from earlier and it was way to cute! Thank you so much for sending it to me.
Well that about wraps it up for this update. Our next ECI meeting will be in June. His therapist won't be able to see him until the first week of June. So fingers crossed we continue to see progress. It is nice to walk into his classroom and hear he is having a great day and minimal issues. Fingers crossed next week when they pull his morning teacher out and replace it with a new teacher that his world does not go upside down! He sort of loves that routine of his!
Since life has given us some entertainment who am I not to share. There are up's and there are down's but in the end I have the best family I could ask for. It isn't easy when you add a child who has special needs into the mix. However it does keep things interesting. So sit back and enjoy the ride.
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