New to this, but have questions... Son with special needs

Kerry - posted on 11/07/2008

hey again lydia
I did look at the information i could find on moebius synd and from what i could see there is, especially at his young age, a lot of symptoms that could be similar. I suggest that perhaps if you kept i diary of symptoms you see, even if it is several years worth, by the time the docs can see what is happening with tony you will have plenty of 'research' into his behaviours to add to the diagnosis project.
Until then, I think he would need to be a lot older for them to be able to seperate his issues, but until then some sensory work along the lines of treatments for autistic children, couldnt harm him. Things like watching to see if textures bother him, colours overstimulate, or where something seems to frustrate him.
So give it a few years and dont panic, try not to make something more out of an issue or behaviour, than there really is there. If you keep a diary you can read over some of the behaviours when you are calm and relaxed, that might help you see the realistic side of something.
keep up the good work, watching for behaviours can help. It may take some time for any confirmations but he is young yet theres plenty of time.

Lydia - posted on 11/07/2008

Thanks ladies, I am glad to be so welcomed! I was watching the news yesterday morning and they were talking about autism and the symptoms and signs and such and I went through most all of them and realized that because of Tony's physical limitations he shows all most all signs of autism, but it is his syndrome could it also be linked to autism? I know this is a question for the docs but I would like your input. There have been no cases of autism linked with Moebius, but things are not always as they have been in the past so I know that additions to syndroms and such can be added when there are links found. I am just very curious because we have no known research between a link of the two. If I can find or see something that the doctors are not then I feel like I am helping them.

Kerry - posted on 11/04/2008

hello Lydia, welcome. I think we would all be happy to help where we can. I have seen a few children who have other disorders which also have many autistic traits. Until you know more about how moebius is challenging your son, you may not see where any autistic traits are. Usually autism affects the social and communiction areas. This can be things such as not feeling pain, not socially interested in people, obsessions, and yes things that may be a little different like finding the ceiling interesting/funny.
Tony is a beautiful and unique boy, and god has a plan for him and I am sure he will teach a lot of people a lot of things jsut by being around!
Encourage your 3 yo to understand that tony is special, and he will need to know that his family love him no matter what. I used the illustration that my son was just like it would be for us if we landed on an alien planet, how do we know what the aliens are saying to each other? how hard would it be to understand? So thats why tony takes a lot of time and mummy daddy and brothers and sisters need to spend time to help tony understand. I think with any child of special needs, the brothers and sisters need to be in on the help/research and understanding of these needs. Other children when they get to school age, can (and usually will) be very cruel, so siblings that are prepared can deal with the situation of gawkers etc, in a much better manner. I found that my younger daughter became the 'big sister' figure at school, teachers could ask her questions and she usually knew an answer or how to help. This took a lot of stress from both me and my son, i knew she could be trusted to help if the issue was minor, and she would tell the school if it was something ineeded to be called for. She also was kept informed of the information we had re my sons disability, and could pass information to others.
As my son got older and could see for himself what he was doing that was strange to others, he didnt need her help. So we could wean her off having to be big sister (she is 3 years younger). The understanding of the amount of attention that brother needed and why, prevented a lot of "you luv him and not me" attitude.
I wanted to say that to you, as i have seen siblings that have been allowed to be out of the loop, or not involved with their brothers illness, these people became the sort of people who avoid even saying hello to someoen who is disabled, and or they ignore the basic courtesys (you know the people who park in disabled car parks). So building an affinity or empathy into siblings can help prevent difficulty within your social area.

Kathleen - posted on 11/03/2008

Lydia,

what a beautiful baby. I know that searching for answers can be frustrating, but don't blame or think that you did something to cause or deserve this. having someone to talk to is always nice and I know that sometimes it is the only thing that saves your sanity you can leave me a message anytime and i will write back . I have a son on the spectrum and 2 girls that are not.

Kathleen