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hi,

my son was born on 4/4/14. My wife's pregnancy was pretty hard but not extremely hard. She had issues where she would pass out, had extreme itchiness a few other things. My son Faizan was born around 6:30pm with a c section as his head got stuck due to my wife's pelvic bone structure.

Moving to 20 months.. I have nephews who are 6-8 months older than him and at that time they were behind him. my son could read nursery rhymes, do all the actions of nursery rhymes, was really ahead of everything. And slowly slowly he's forgotten everything. without going into to much detail I was wondering if anyone had similar experiences? and where is your son now?

My son recently got diagnosed by Kennedy krieger and just had blood work. is there something you guys would suggest to help? I just started b12 and cod liver oil to help him. not to sure what else I should be doing so anything would be extremely helpful.

thanks

worried dad

Please describe, in some detail, how he is now. How is his speech, his social abilities?

Has he totally lost speech which he has gained earlier?

Forgetting nursery rhymes at age 2, in and of itself, might not mean much at all.

Keep in mind, that his whole life is in his age, so what may seem as a couple years to you, to him so far has been a life time. unless you keep him doing the same things all the time he will go off to dilute what he has already learned with that of other needed experiences, esp his learning to better control his biological needs, like walking running and balance, as well as understanding what he sees feels and hears . so his quickly forgetting things is common for his current age. Right now he is more focused on his surroundings then people and such, let him, but try and keep him looking at you and making eye contact, much of why asperger people have a hard time with body language is because they never look enough to learn it. get him some (large so he cant swallow) Legos.

I would take him to a psychologist or psychiatrist for an evaluation as soon as possible.

If they find an issue like autism, they'll refer him for Early Intervention.

Never feel all hope is lost. Keep a positive attitude. Never give up.

I had no speech at age 5. I'm an independent adult now.

You have to be active in helping him, too. I mean, you should try to be an amateur therapist as well as a parent.

You should keep track of what they are doing in the sessions, and use at least some of those methods yourself.

You should buy educational toys. And educational videos, too.

Stay around for people who have much experience in parenting autistic children.

Did you take him to a neurologist too?
I would do that, in case he has some more specific brain disorder going on.

Regressive autism has to be so heart breaking to watch.

Be aware there is so much more hope than there ever has been. Early intervention does work.

My son didn't have regressive autism so I'm not sure what to tell you on all the little "can't hurt" things you might want to try, but do be careful not to fall prey to dangerous fads. I can say that some parents find that going gluten free helps, but it all depends on if your son actually developed some sort of intolerance that may have been his trigger to regress; no one functions their best when they are sick. It can't hurt to try. Actually, the whole range of food allergies and sensitivities are something you should consider experimenting with. We found out that my son behaved better if we pulled soy, for example. We later figured out that quite a few people are sensitive to soy. There is a whole list you can try. You can't accurately test for these; its all a process of elimination.

My son may not have regressed in the official sense, but I did witness him flip like a switch a few times, suddenly being unable to handle situations he had loved and enjoyed a short time earlier. The sensory seeking baby became the 3 year old that froze in the entrance of a noisy restaurant, too overwhelmed to enter. So many examples of things like that. Each small one a surprise. What you've gotten is a big one. I believe it all comes from the same place, but it is obviously much more difficult to handle a loss in speech than a sudden fear of a noisy place. I have a lot of personal theories on what might be happening that I would be happy to share, but I'm not sure there is a point: none of them help you figure out the next step. The next step is to be mindful of new triggers and learning to avoid them, while finding out how to connect with him again.

I wish you the best of luck.

Neither of my kids regressed, either, just a disclaimer.

What I can tell you is that my 10 year old daughter is NOTHING like she was when she was my 2 year old daughter. My 2 year old daughter was non-verbal, did not do well with following commands (for a while, I thought she was MR), she didn't always respond to her name, ignored other kids, engaged in self injurious behavior, no imaginative play, would rip paper into tiny pieces and arrange it for hours if allowed, and so on.

Today, at 10, she is articulate. She is above grade in reading and writing. In fact she scored in the 93rd percentile nationally in her last ELA standardized test. She is an exceptional artist. She has friends. She has an awesome sense of humor. She is well behaved. She is happy.

She is in an integrated classroom and spends a lot of time (lunch and recess) by herself. She has 3 kids who are friends enough to invite over to the house. She went to a school dance the other night, and when I asked her if she had fun, she excitedly said yes. When I asked her who she hung out with, she said "mostly myself" even though her 3 friends were there. She gets overwhelmed when things do not go as anticipated. We have to do a LOT of preparatory work for unfamiliar circumstances. She shuts down. She has selective mutism. She can become fixated on things to the point that it interferes with "normal" functioning. She has difficulty reading others. She can pass, but she is not typical.

But again...she is articulate, she is bright, and she is happy.

You can't know where your son will be in the future. What you can do is research the heck out of things and keep trying things until you find out what works for you and your son. The one thing I will say, though, is to avoid feeling like you need to do *everything.* You can't do everything, and you shouldn't do everything. Your son is a kid and his whole life should not be a giant intervention. So you research, figure out what seems like it might help, and you try it. You stick with what works. You stop what doesn't, even when other people insist it is what helped their kid. For my daughter, dietary modification worked at age 2. Removal of casein stopped her SIBs and made that chronic spaced out look go away. Removal of gluten did nothing. She had PT/OT/ST and behavioral therapy. Not all that they offered (we live in an area where they offer a LOT through early intervention) and I carefully watched her for signs of burnout and stress. I, too, tend toward attachment parenting, and although her whole life does not revolve around interventions (she no longer gets any stand-alone therapy), I do consider all of life a giant learning opportunity. For her and for me. We are a team. Sometimes we are on the right track and sometimes we get off track and need to get back on.

My daughter is awesome. I know all parents say that, but mine really is Have faith. You guys can find your way too, no matter what the future holds. I will not lie: sometimes it is incredibly exhausting and trying. I cannot count the number of tears I have shed or the number of times I secretly wondered if I could continue, but--at least in the case of both of my kids--it does get better. Or maybe I am just desensitized and I just think it is better LOL! I don't know...but hang in there. The beginning is the worst. Then you adapt and adjust to your new reality. The best of luck to both of you. I was not a member of this forum when my kids were your son's age, but I was a part of a different forum with parents and adults on the spectrum and it was a life saver. So my final piece of advice is to stick around. It helps.

He must have a PDD.

PDD stands for Pervasive Development Disorder. It will not help you in any way. It is not included in the most recent DSM and was the old "category" that Autism and Aspergers fell under. So, yes, if he was diagnosed on the spectrum, he has a pervasive development disorder, according to previous versions of the DSM.

This is both a hunch and a statement based on my experiences over the past 8 years.

Parents of kids with regressive autism--again from my experience--do not usually buy into neurodiversity or the idea that their kid doesn't have anything wrong with them. They often define autism as an illness that needs to be cured. I think it makes sense. Their kid was not always "like this." Unlike my kids, who have never been like typical children. It's easy for me to think that my kids are the way God intended them to be, because they have never been any other way.

Sites like this, that are shared by people on the spectrum and parents of kids on the spectrum, are often neurodiversity-friendly at the very least, or heavily influenced by neurodiversity.

Therefore--again, from my experience--you are less likely to find parents of kids who regressed spending a lot of time on forums like this. I am not saying they never do, or that there would be anything wrong if they did. It's more that a lot of the views here are not always compatible with the "autism as an illness" perspective. And sometimes people who have a strong affiliation to the concepts of neurodiversity can be downright rude and unwelcoming to parents who do not believe their kid was "born like this" and who are actively searching to "cure" or "recover" them. I know not all parents of kids who have regressive autism want to cure or recover their kids. And not all people who ascribe to neurodiveristy are rude and unwelcoming to people who don't.

I know I am speaking in wide generalities that do not apply to many people. I'm just trying to explain why you may not be finding a lot of info about regressive autism here.

Unfortunately, I do not know where the parents you probably want to talk to hang out, so I don't know where to direct you. Back in the day, I started on BabyCenter and left because I could not tolerate the main vibe I picked up there. A lot of "curbies" who tried to shove their beliefs down my throat and belittled me because I was not "moving heaven and earth" to "cure" my daughter. I didn't know what neurodiversity was then, but I did know that the things they were saying didn't match with what I felt deep in my heart when I looked at my daughter.

Regardless of all of that, I do know parents of kids with regressive autism, and it's not like they are two wholly different conditions. You can probably still learn a lot here, even if you don't find many people who have experiences that look familiar to you.