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At What Age Did You Start To Suspect Autism?
A MyAutismTeam Member asked a question 💭

my son was only 9 months old and he would make motor noises and spin tires on stroller for hours at a time. so it was pretty obvious for me even tho i didnt know anything about autism really. it took me years tho to get the drs to listen to me. now hes so severe they scaled him an 11 on a 1-10.

posted March 28, 2013
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A MyAutismTeam Member

Most people here would tell you that no one or no agency is going to offer you anything, unless you get lucky and someone is being nice. Other than that you have to do all the research and all the legwork all on your own. Any help you do get generally takes a lot of work on your part, and that is just how it is. I know this is not right but we can oly deal with what we have been dealt.

I feel bad when people say they cannot afford things, because trust me I am in the same boat, but that just gave my wife and I all the more reason to fight with the schhols and fight with the agencies to get what we wanted. We also used the election year as a tool, by contacting our local politicians who were running for office. I have to say the two we contacted helped us out a lot, and I am not sure if it was because of the elections or not but I suspect it was. We also threatened to go to the media.

I guess what I am saying is that things are not easy and they will never be so you have to just keep getting back up after being knocked down.

posted April 2, 2013
A MyAutismTeam Member

@SaneCecil does your son have an actual ASD diagnosis? Have you applied for SSI? You also need to check with the state that you live in to see if there are services available. Your child is becoming too hard to handle and you need help, so if you are in a state where there is nothing and you cannot afford to pay for services on your own you need to move to one where they will. We chose residential as a last resort because we did not want to be where you are right now, and the earlier you start with the intense treatment the better the results are going to be. If you are not getting anywhere with the school system or stat you need to get an advocate to help out, and if worse comes to worse a lawyer. Our state agency DDS (department of Developmental Services ) paid for our advocate ones my daughter was approved by them and their program.

We had a discussion with the residential team and they told us the mistake that is made is that parents cannot let go and get their children the help they need and they put things off to keep them at home, and it just keeps getting worse. My daughter just turned 7 and they believe she will be in residential for about 2 years, and then they can transition her to the day program and back to living at home .They say with the intense therapy they can provide she will never get to where your son is now. I will tell you we lived in Florida and they would not pay for this so we moved to MA where after a year’s worth of dealing with the school system they did. The school did try everything, but ultimately knew our daughter was not safe in their care during the day and had to agree to pay for it because if something were to happen they would be responsible. We certainly could not afford 360K a year so we are glad they decided to do it.

My wife met with the school system last week and they are not mad at us or giving us a hard time for making them do this, they said they knew she needed it but they had to do their due diligence before ageing to pay for residential. They also could have chosen to pay for a lesser school and decided to go with the best, so they knew what she needed, even if we had to get an advocate.

posted March 29, 2013
A MyAutismTeam Member

My son does the exact same things with the tires and the spinning of wheels too. He seemed completely fine until 2 1/2 now he is 4 and we are still wondering if he may ever talk.

posted March 29, 2013
A MyAutismTeam Member

yes he was diagnosed thru the school at age 5.
and i have had ssi since shortly after cuz the worker helped me with it.
but he costs way way more in damages etc than we get. way way more.
i just moved and checking here for services hoping they will be more help than the
past ones.
my child has always been too hard to handle and ive needed help a long time.
he first broke my nose 5 yrs ago. so this stuff is nothing new.
i have moved over and over and over. it does not help so far so if it didnt
help this time then it wont. hes much happier here and we are too so we are staying here.
the last advocate we dealt with was as shitty as the school she worked for.
i cannot afford a lawyer or id of gotten one long ago. im sick of how the schools do him.
the last one didnt even want him there. neither of the last two. we keep moving mainly cuz
the crap schools.
i will look into the dds thing.

i am not the perfect parent but im sorry i wasnt gonna just throw my son in a home at age 3
which is when everyone started bitching at me to do so cuz they didnt want to deal with or teach him.
lack of resources is not a reason to lose my son. its bs that there are not more resources for kids of his
severity that need the help the most.
my son didnt GET to where he is now. hes ALWAYS been this way since a toddler. that is what you dont understand.
i didnt just neglect his needs and he became this, this is who hes always been.

im glad you got the help you need but its hard to get or find. and they keep saying there will be more resources
and help in the future for kids but i need the help now and for my kid. and im sick of everyone telling me they cant help
and to just put him in a institution. people dont even want to try.
i know my son, he will never be mild but he can be helped. hes in there and full of love.
he wants help. he deserves it!
his last two schools hate us and im fine with that. i hate them too.
im glad you got what you need for your child. hopefully i will too. we will see i guess
but thanks to people not wanting to help our son, its gotten to where its wore us down so much
that a home temporarily is gonna end up our only choice before any miracles finally start happening.

the world wins. as usual.
gage is breaking everything. gotta go.

posted March 30, 2013
A MyAutismTeam Member

Oh I definitely will not give up and I will be swinging the whole time. I really think that the only way I will get my son back is by going to the media. On may 6th I will find out if I must get my local new station involved. I will go as high over the courts heads as I have too to get BOTH my boys back. Thank you for the support and I may need a little guidance when it comes to the channels I have to go through to be heard loud and clear.

posted April 2, 2013

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