In tears... Help me, PLEASE

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My preschooler is non-verbal. I am severely depressed because in addition to autism, the school district labelled him MENTALLY ret*d. And, of course, the insurance company and our local regional center ran with the same 'diagnosis'.

I don't care about the labels per se ... We can get rid of them at any point IF my son makes gains intellectually and cognitively. This is our biggest challenge.

I don't expect him to be the next Wordsworth or Einstein or Beethoven or Lincoln ... I just want him to talk and hold a job .. even a job as a retail clerk, eventually.

HOWEVER, even with such low expectations for him, I am feeling severely discouraged today. I have been working on getting him to sign YES / NO for the past two weeks and there is ZERO progress. He can sign a few mands but does not speak one word - not even Mama. It gets overwhelming and I am truly worried about him and his future. I am struggling to stay positive, hoping that he will eventually be able to communicate or at least sign, but it seems so bleak now.

I am fighting the MR label but sometimes I wonder...Most of the kids who were in Early Start with him gained SOME language. My son got NOTHING out of it and regressed even more over the past year after we discontinued ABA to try something else.

Help me, please. Do kids on the spectrum eventually outgrow all of their delays and talk / sign ? I am just so depressed right now and wish I had never had him.

I have no way of knowing your child's prognosis, but I can offer some advice to give him every chance at success based on my experiences as a parent and a teacher.

First of all, do your best to find him a Speech Language Pathologist who specializes in working with young children. Don't wait for his delays to get big enough to justify services. Insist on intensive therapy - or at least a detailed evaluation - right away. Let the SLP tell you what he/she can do to help.

Another great resource would be an Occupational Therapist who has specific training in Sensory Integration Dysfunction. Have your child assessed to find out if there are interventions that might help address the possible sensory issues that make socialization and communication more difficult.

I think ABA is a good intervention to help kids with Autism acquire appropriate behaviors. I think that, if you have not already had one, an evaluation by a person trained in ABA could give you more ideas about how to support your son.

Most importantly, if you haven't already, connect yourself to other parents who are having similar experiences. Don't be alone in this because you can learn so much from others who have come before you. They can help you keep your sanity when things become overwhelming.

Your child is just getting started. With very aggressive interventions, you can really give him a solid start. It sounds like you are already doing this, and I apologize if anything I am suggesting is something you've already considered. Clearly you are an awesome mom and your son is very lucky to have such a strong advocate.

Hang in there!

I am not convinced that IQ testing for autistic children is very persistent at the preschool level. I cannot see into the future, obviously, but if your child is having a lot of receptive/expressive language issues then this could look like MR, but not be.

As far as not signing goes, if your child has apraxia (poor motor planning) he will not be able to sign even with higher IQ. My son has apraxia (poor motor planning) but we were lucky and he was verbal, so the fact that he could not sign was not pragmatic in the way it would be for a non verbal child.

I would do what was suggested and get a really good specialist who can help you. You won't know much until you can get him to communicate better, and even then autistic kids have their own pace. I am convinced many children were mislabeled MR due to communication deficits.

Hi Kristi,

I have him in a TEEACH based Preschool for about 20 hours a week, speech 2x a week, OT 1x a week, and ESDM based ABA about 15 hours a week.

My biggest problem isn't getting him therapy. It is the pain of not seeing him make progress. All of the kids who went to Early Start with him came out speaking at least a little bit. THAT worries me. At this age, my daughter (who was also considered speech delayed but has since more than caught up) was using 2 word sentences on her own and echoing 90% of what we would say. Plus, she WANTED to talk. My son does not want to communicate except to get his favorite candy or musical pieces.

I am at my wits' end with his lack of motivation. On Friday, his ESDM therapist claimed to have heard him say "Give me mm" (he sounds the letter M out for M & M). I don't know whether to believe her or not - Friday was her first session actually. I hope she wasn't making this up... Or misunderstanding what he said.

He is a warm, loving little boy... I just want him to sign / communicate / talk. I am just at the end of my tether now.

When my daughter was first assessed, they estimated her IQ to be just above borderline intellectual functioning (young preschool age).

The last time she was assessed (kindergarten age), the estimated her to be in the superior range.

So, yes, they can change a great deal. That doesn't mean all kids will, but some do. It is too early to tell for your son. My best advice to you is to proceed as if he has all the potential in the world. I also know moms who stopped referring to their kids as non-verbal and instead referred to them as pre-verbal. It seems a small change, but I think psychologically it is an important one.

I will also let you know that of the group of moms I met who's kids were diagnosed around the same time as mine, 2 did not start speaking until almost 5 or 5, but they are both rapidly gaining on their peers.

One thing that helped my daughter was verbal behavior-based ABA. I am not sure if you can find someone nearby who does that, but that combined with speech made a big difference.

Good luck to you!

I don't sit in your shoes, so I can't say what paths are best for you to take, but having read a lot of stories, I can hold out hope. There are members here who were non-verbal and essentially non-functioning until their preteens, and then suddenly broke through and are quite well functioning today. I can't suggest the odds are great for that when things go on long enough, but you aren't anywhere near that far yet.

I don't think you can focus on the future or the prognosis today. I think you focus on being the best mom you can be to the child that you have. Even when the rest of the world writes him off, you never have to, and that will be the best gift you can ever give him.

That road is going to be rough and full of difficult times and tears, however, so think hard about how you plan to take care of yourself and nourish your needs through the times ahead. You can't be there for him in the ways he will need you to be if you neglect yourself and let your spirit wither. Do everything you can for him, but take care of yourself first.

We do have a special thread in the sticky section, too, when many of our parents to non-verbal children congregate. I think you'll find that subgroup to be very supportive.

Don't give up. Don't wish you never had him. Autistic behavior does -to some degree -plateau over the years. We do learn and grow -I've changed a lot since I was little and I couldn't have done it without my parents.

Remember that he is a unique individual and will progress at his own pace so comparing him to others may just be more discouraging for you. A lot of people here have described development seeming to go no where for some time then occurring in sudden leaps. Try to keep up your strength and your hope. Take some time and do something special for yourself if you can and as others have said, try to find other parents with similar issues to connect with. You really aren't alone, there are many parents out there who share your worries and your pain.

I think one can take some useful perspective from Aspi-rant's post. I think as parents, it is very easy to get caught up in doing "everything we can" to help our kids. So caught up sometimes that I think we forget they are kids. I don't think there is anything wrong with trying to find some level of balance. Life should not just consist of going from one intervention to the next. I do not think it is helpful for the child, the parent, or the child's relationship with the parent. Time needs to be left to simply co-exist in the same space. I think this is what Aspi-rant is saying.

I wish someone would have told me early on that I didn't have to do "everything" for my daughter. Granted, I never accepted the total amount of hours she was given because it just seemed weird to me to have my 2 year old doing the equivalent of a part-time job, but I sure did get the impression from other parents I knew that I was somehow delinquent and not doing enough. Heck, it wasn't just an impression. Some people flat out chastised me.

I'm just saying that from my experience, it is easy to get consumed by therapy and how much intervention you are doing. I think it is worthwhile to consider if you are doing too much. If you are not spending anytime together just enjoying one another's company and everything becomes "work," no wonder there is stress.

OP...have you tried RDI?

I am really sorry to hear about your child. I can only imagine how it hurts.

I work around college disability support and I can only say the following.

Your doing the right thing, intensive treatment may be painful at times right now, but with early intervention, the odds of success are high. It will have ups and downs, and it will hurt if he's not front of the class, but keep trying.

These are skills you need to be successful in life, so keep doing what your doing, and try to be strong.

Thats an awful thing to label him, here in the UK we absolutely do not use the MR label, its considered very offensive
I would recommend you watch Temple Grandin the movie, its an amazing film and she is a real inspiration, there are lots of vidoes of her on youtube, she was non-verbal until the age of 4 or 5 and it was not because she had a low IQ, she was just a thinker! I watched this film and I absolutely loved it, the woman is amazing.

I hope you are feeling a bit better

How old is your son? My son is four and at his school they said it was impossible to judge/test his IQ because of his low communicative level.