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Help for young son on the spectrum

C

Chris1990

New Member
I am new to the forums, and I am not sure if this even allowed here. If not please remove this thread and I apologize.

My son is now 4 years old. It has been a year since he was officially diagnosed as being on the spectrum.
He is almost totally non verbal. He only says about 5-10 words. He goes to a developmental preschool that works with him on speech and other therapies. His speech therapist there started using an augmented speech device and it improved his life a lot being able to communicate. Since the. I have created a go fund me to try and purchase the same program he currently uses through school and a device to use it on. Any help is very appreciated whether that would be through donation or spreading the word on social media or other places. MY son has been through a lot of other problems aside from the spectrum. He was born with kidney and bladder inflammation and a spinal tether that has caused him to have several operations and we are looking at several more in the years to come just to maintain his quality of life a child of his age should have.

If you would like to help me out with my gofundme the link is.

https://www.gofundme.com/help-give-mason-a-voice
 
He's speaking at the same time I did and Albert Einstein! We both turned out fine when it comes to talking.

Honestly, take it one day at a time. Don't think too much about the future or read too many stories. He's been getting speech therapy? Well that's what I got too, I picked up adult words not too long after that.
 
Well it is more then that. He has breakdowns... where he is unable to tell you what he wants, or more accurately you do not understand his grunting and pointing and so it causes a violant meltdown. The device that he has been “test driving” through school has stopped 90% of these episodes.trust me I don’t compare him or push him based on other people. I judge his case on what I see with him. He actually was talked a lot more at about 2 Yo, then as he got a bit older he completely stopped and has relearned the 5-10 words he does now know
 
Hmm. I used to get angry too when people could understand me. I would spend hours sitting under the kitchen table frustrated.
 
Did you test his IQ? This is important.

Most likely they are using incorrect methods to teach language. The fact that he spoke at 2 and stopped doesn't mean that he suddenly became super autistic, but that something happened that made him decide to stop communicating verbally. This program started helping him a bit because it uses visual aids to make him understand the connection between words and meaning.

If his IQ isn't extremely low then it should be possible for him to learn through a more visually oriented approach. No need to use baby-speak either as he should be able to string together correct sentences at age 4. It would be a terrible waste of both money and his talent if you limit his communication to this device, simply as a crutch rather than addressing the issue. It's also very important to expose him to a lot of speech. Talk often, let him make choices on what to do, TV shows (With subtitles is the best), reading stories to him. It depends on what he likes. So it's not just a session of learning an hour a day. Direct learning gets boring really fast so you most likely can't get him to learn through that for a very long time. There is also all the new gadget stuff, there are plenty of free or cheap apps that have games, etc that can allow him to learn visually as well. And that doesn't take an overpriced Ipad + outrageously priced software. And you can settle for a cheaper device (Maybe you already have one). Also, these programs are not a crutch. They are used for learning so he will be forced to talk to express himself, rather than just rely on a program that does everything for him.

If he still has severe problems speaking and doesn't improve from simple visual learning and increased exposure to speech then still it's a much better idea to forego this program and instead focus on finding someone specialized in teaching children with Autism on how to speak. Not sure how long he went to that school, but 5-10 words is abysmal for any considerable length of time.

I was nonverbal until I decided to talk, by the way (I know I could speak way before I actually started speaking). I suddenly started to talk very well from being nonverbal. This after speech therapist after speech therapist. I think they even thought I was deaf and mute at one point. They were just really incompetent. I started speaking eventually because my mother always let me make choices, and my mother could never shut up (she still can't). Oh she read me a lot of stories too, which I actually liked.
 
If you don't manage to get the funds I'd look for charities that might be-able to offer grants for cases like this, I'm not sure what country or area you're from however to look for you. I'm sorry my financial means are poor regarding donations.

He will very likely develop better speech in time even though he's a very slow developer, it is even possible for him to make sudden improvements because I couldn't be understood until I was older than him with extremely impaired speech, although my brothers were also very similar and are now proven to be on the lower functioning end of the autistic spectrum, their comprehension of the world is very limited as adults, but they can still talk and make reasonable sentences to the level of an average 5 year old which at least allows them to be understood. I will say however that despite all their issues over the years, they appear to be happy most of the time and are still cared for by my now elderly parents.

It is not too unusual for children on the autistic spectrum to also have other medical and sometimes physical issues, I'm not certain whether your son's particular conditions are in any way related and the kidney issue probably isn't, but I have spasticity in my back that was diagnosed as a very young child and my tongue was said to be misshaped (very flat ended) to the extent that they were going to operate, although when my speech improved they cancelled the operation, my very slow speech development wasn't just related to my tongue however. I still struggle to pronounce my "r"s but apart from that I've worked around it and I have issues with my back now I've got older. All 3 of us had epileptic fits as very young children which we all grew out of.

Anyway, I wish you the very best and please keep us updated.
 
Thank you all for your kind and speedy replies. To go into some more depth. My son has a very strong support from myself, his mother and my parents. We work with him non stop daily through play to try to talk to him. He does make all his own age appropriate choices. I have not had his IQ tested however I can tell you it most likely is not low. HE understand way more then most kids his age, and we do not use any form of baby speak with him. We speak as if we are talking to a child of 6-10 most of the time. The device and program I am looking at is the same way and why I want to get it. It is 100% customizable. It grows with the user. If it is a young child it can be used to only say 1-3 word or phrases then as they get older whole sentences. And heaven forbid it. But if he never actually learns to fully be verbal I will love him all the same it also does text to talk. It is an amazing program. However this doesn’t not mean I am giving up on him learning to speak or using it all the time. We attempted to do sign language to pie with speech. But he has fine motor problems that do not allow for wel oriented signs. So that just frustrates him as well.

As far as donations I am not just asking for hand outs if you don’t wish to. I have never even requested help until now. I recently have needed back surgery and things are just pilling up. So any little bit helps.
 
Chris1990 said:
I am new to the forums, and I am not sure if this even allowed here. If not please remove this thread and I apologize.

My son is now 4 years old. It has been a year since he was officially diagnosed as being on the spectrum.
He is almost totally non verbal. He only says about 5-10 words. He goes to a developmental preschool that works with him on speech and other therapies. His speech therapist there started using an augmented speech device and it improved his life a lot being able to communicate. Since the. I have created a go fund me to try and purchase the same program he currently uses through school and a device to use it on. Any help is very appreciated whether that would be through donation or spreading the word on social media or other places. MY son has been through a lot of other problems aside from the spectrum. He was born with kidney and bladder inflammation and a spinal tether that has caused him to have several operations and we are looking at several more in the years to come just to maintain his quality of life a child of his age should have.

If you would like to help me out with my gofundme the link is.

https://www.gofundme.com/help-give-mason-a-voice
Click to expand...
As you probably realize by now, we are glad to help here. The big question is: what do you really know about autism? One aspect you need to realize, when it comes to autism, many therapists and doctors don't really know what they are doing. Autism comes from the root word meaning "self." It was originally thought the autism was a withdrawing inward and non willingness to face or deal with the outside world. Doctors are still pretty much trained to think this way, although it does seem to be changing. I think you will find very few, if any, here that believe this. The real problem, for the most part, is an inability to understand or deal with social interaction. The desire is there, but there is a lack of understanding and inhibitions over how to go about it. Deal with it from this angle and do not try to force him out. Forcing him out may cause mental trauma that can make the problem worse. Encouragement and social skills training will work far better.

I Am NOT A Trained Expert. I AM seriously autistic, and my observations and advice are based on my own experiences. As is most of the advice you get here, which is based on the experience of those who are autistic and had to live it. In my opinion, we probably know more about living with autism than any medically trained expert.
 
Probably, most likely, I think and almost certainly are not useful metrics. There is a very wide range when it comes to IQ's and even if you know he's "smart" there is a huge difference in how to approach his education if he has 115 IQ vs 130 IQ. If it turns out he does have a high IQ the school system will completely ruin his life with 85 IQ education and speech therapy. And make sure you don't get an "All autistics are retarded and this proves it" test. Get a standard test such as CPM. The test should contain nothing but visual problems.

At best this software is a waste of your money and at worst it's detrimental to your son's development. He talked at age 2. Now he's still using 5-10 words. Clearly this is not working, if it was he should be better at talking now than at age 2.
 
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