It has been about two months since we found out our son did have true life threatening allergies not just the delayed intolerance we had previously known about for the last 4 years. I left the doctor’s office with a new prescription for an EpiPen and not much else. He had handed me the list of tests that were done a pediatric panel of 12 common food items. 7 of which had come back in the red, as in, don’t eat! My first response was ok no big deal he really has not eaten most of these for 4 years and we know how to do this. As I started to process, I asked the doctor what this meant for the two groups he had consumed, apples and rice. The doctor calmly responded…he can’t have them anymore. I looked at the doctor and said, “What am I suppose to feed him?” at which point he walked out of the room.
As we prepared dinner that night my husband and I just looked at each other. What do we feed our growing boy? Milk is back on the table but he had not had it in 6 years and eggs might be ok it had been 4 years. We said, “CHIPS and CHEESE” as that is all he ever wants anyway…I think that will be the title to this story!
Happy Autism Awareness Day!
It is kind of funny to think that there is one day to celebrate Autism Awareness because the saying is so true that to families with children on the spectrum we really need people to be aware everyday. It does bring much joy to me to see all the buildings light up in blue. Joy knowing there are people that understand and care because there are lots of other days that this does not show up.
It has been a tough go around here lately. While we have one diagnosed with Asperger’s and he has his moments all in all he is a very bright kid who has gone leaps and bounds with his therapy. If you walked into his classroom you would not likely notice his challenges. He has a 504 but as I brought up to the school last week; they have not even been meeting his simple accommodations for the last three years. He is a self-advocate and I am so proud of him everyday.
His younger brother has quite a different story. He has not gotten the Autism diagnosis because he managed to play nicely with toys he loved for an hour with the specialist’s student. Wow! That does not tell me much…lets try something he does not want to do…that is a different story! So his only diagnosis is expressive language disorder which the school completely dismisses and told us last week after fighting for a 504 or IEP that they would never service him even if he got the diagnosis because he is too smart!!!
I literally have a little Einstein that is behind in all academic areas that builds rocket ships for fun who can’t get a public education because he is “too smart.” The school tried to dismiss his complaints that the teacher had thrown his work in the garbage (I’m guessing it had some building design on it instead of the work it was suppose to have), ripped his headphones off, and pushed him into the bus line as he was not able to express properly. After this he refused to go to school, who would want too? So we started our homeschool venture in hopes that we could get an education plan in the future and send him back.
So why is my soul on fire? It is on fire for the broken systems that we are living within. I am sitting here writing this today because I was suppose to be in Jury Duty so I had to send my little side kick out of town with his father on a job so I could serve my Jury Duty. It was a real struggle for me not because I mind Jury Duty but because I was told I had to at the same time as our local school district is failing to follow the laws that they have too. It is not just the DHS system we have served the last year that is broken…it is the whole system. My soul is on fire for all the brokenness.