My daughter and I need your help!

Shea - posted on 12/05/2011

My daughter is the same way! I thought I was the only one that had this issue. I have yet to figure out why....but heres some ideas. While you would think lunch time, being an activity that takes place everyday, same time, in the same place would be soothing for a child with special needs, because of the consistancy, there are other factors to address....the noise level, for one is a factor with my daughter, it makes things 10 times harder for her, concentration, attention, etc. Also, because my daughter has a lot of sensory issues as well, especially with food, I have to wonder, if the smells, sights, and sounds all run together, and over stimulate her. At our house, tv's, radios, etc have to be turned off, all our family and friends know between 5-7pm its down time for our family, eating, catching up on the day etc...but more importantly, ANY distractions for Abby cause her to at times completely lose her appetite. Do any of those suggestions help?
As for the OT, does she have an IEP? Most schools have therapists, that are in place to provide therapy for special needs children. As for getting a diagnosis, I would be more than happy to help locate some suggestions for you. I founded a support group for moms of autistic children, and have many resources. Feel free to contact me anytime. There IS loads of support, resources and people that can help!

LaNee' - posted on 12/03/2011

My hat goes off to all the parents who are sticking to thier guns and searching/getting the help for our kids......As a mother of a child that is autistic(finally recently diagnosed); I know the frustration of finding help and having people take heed to what you are noticing about your child. The child who you carried and literally shared the same blood flow with. The child who you knew had hiccups and wanted to stretch out in your belly as if he was lying on a California King size bed!! Of course I would know if something is going on with my child. I started noticing my son gazing off, while nursing he seemed to be in another place. As he got older he, took in information like a sponge but he would not communicate with you. He started walking late, he only said a few word 5-10 wrds at 1yrs old. Then when he wa just shy of two years, his few little words turned to none. But he still loved kisses and hugs, storytime and music. Pretty social with adults and started distancing himself from playing with other kids. He would point to everything around the house as if fro you to tell him what it was. I thought something was wrong with his hearing, but Nope, he passed that test. if you call his name he will respond. Getting his attention is the task. His jearing test came back fine. By 2 1/2 yrs he still was not talking and making a high pitched scream when excited,frustrated, upset, and happy. Everyone from doctors and close family members were telling he the dreadful" He does not look Autistic", or "Just wait and see, he may grow out of this stage." Yeah, so NOOOOOO, I was going to get my child teh help he needed that at this time, only myself and he knew somthing was going on. His pediatrician referred me to a Autistic screening program ran by Childrens Hospital in Oakland, Ca. The waiting period was up to six months...this was nine months ago and I have not heard from them as of yet. Trust i did not wait around for my child to possible get worse. I looked and read from he$# and high water for help/programs. Then finally 4months before my son turning 3, I came across a State Goverment Funded program for very intense therapy, testing and diagnosis for developmentally delayed children from six months til 18yrs...Finally I found the help I have been looking for. I did get upset due to all my child physicians never mention any programs that were offered free of charge from everything to the testing, therapy and schooling. I wanted toscream that I had been waiting/searching for two years and this was offered services has been sitting under my nose the whole time....Glad to say two months into the intense speech and behavioral therapy,my son is asking for items, saying please and thank you. More independant playing more imaginary games than ever before. He know sings his ABC's and counts out loud. So my advice to you is check your goverment funded resourced for your state. Just google every testing you can think of. Try googling The Mind Institute. They have great information. Keep up the good work.

Kelley - posted on 11/29/2011

Your daughter has a lot in common with my son. He has sensory processing disorder, and has some autistic behaviors. He has developmental delays and has speech delays. The doctors did not start listening to me until he got three years old due to him being born premature. They wanted to blame all his global delays on that. I finally took him to see my family doctor and he saw him and recommended for him to go see a genetic doctor at the university Alabama Hospital and a behavioral psychiatrist. The behavioral psychiatrist determined my son did not have autism due to him making eye contact with people and he was too social to have autism. He also had an MRI and it showed nothing wrong with his brain that it was normal. However, after seeing the genetic doctor I found out the answer to all my son's problems. They did a chromosome test on him and he has a rare chromosome disorder. He has a duplication in Chromosome 2. Has your daughter had a genetic test done yet?? What I have learned about the schools here in the US is that they only give out OT, Speech and PT therapy if it helps in the school situation. My son receives all three at his school but I had to constantly stay on them until I got the genetic diagnosis. Now I don't have to argue at all with them. They even gave him his own special education teacher (aid) that helps him all day in his classroom. I understand how frustrating it is. Doctors don't listen, and you feel like your talking to a wall. You just have to keep on and on and hopefully you will find a doctor that will listen to you. Good Luck.

Kimberly - posted on 11/20/2011

My thoughts are all over the place with this one. But, I just like to say first you're doing an awesome job. We as parents have to be our children's first advocate. With that being said some of the things that you would like for the school to do for your daughter as far as the OT services if the school is not willing to comply with your request then I would suggest getting a special education advocate for your daughter. When advocates come in they basically "speak" for you, and usually what ends up happening is the school gives in.

Jennifer - posted on 11/16/2011

first of all DON"T GIVE UP ! :) schools can be a big pain in the rump sometimes i have a 7 yr old daughter that we are currently having issues with the school about her 9 yr old brother had EI services till he transitioned to school so they are much more willing to help him he gets everything he could possibly need no problems they even offer him services he is developementally behind and severly hearing impaired now my daughter on the other hand is a different story she had EI services but before starting school she caught up enough to no longer qualify but still borderline behind so when she started school no services were in place it has been a real fight to get her any services now since she again needs them grrr! being from the same family ya would think there wouldn't be such a problem knowing that both kids have teh same chromosomal abnormality actually all 4 of mine do my 3 yr old was just dx with autism the other day he is very loving sociable but can't communicate very well what he wants and has a vocabulary of a 1 1/2 yr old they think he knows more than he can say he also flaps his hands and is delayed develpopementally to name a few we have had several ppl question autism with both him and his sister but then they turn right around and said no cause they are showing not enough signs but when he was tested it was very clear it was in fact autism has your daughter been formally tested for autism or a spectrum disorder yet my lil girl we are pretty sure also has auditory defense and other sensory issues as well and chronic diahreaha is it possible to let her eat her lunch in the classroom? will they give her a one on one aide what i find helps and i know its hard since these days parents are not allowed into the school to freely check on their kids at least not here anyway you have to buzz in get a pass ect but if you can write everything down that you can so you have documented evidence of her needs for those therepies ect you want to get for her go to the cse meetings with these in hand and maybe get someone to advocate for you and go with you to these meetings then it won't be so easy for them to jerk you around it is possible where are you from we have a wonderful genetics and developemental dr where i live but even then it is still proving difficult to get my daughter teh help she needs she is going to be tested for autism 5 months from now even though she dosn't strike me as a typical autistic kid she does have several simmilar issues as her brother has she been to the genetics dr its sad but true that even though we hate to label our kids sometimes its almost necessary just to get them the help we know they need best advice is to document get an parent advocator and keep pestering them as far as drs i have had to research myon my own and pretty much walk in to our general practitioner and say this is the dr i want to see and why and here is their contact info i expect to hear from someone within a month regarding an appointment and have a i mean business attitude now my dr knows i am serious and rarely questions me anymore but it took a long time and several of the famous see i knew there was something and you were wrong dr moments for them to listen your the mom go with your gut and if the answere dosn't fit keep looking its hard work but so worht it good luck wish you the best :)