Trying to figure out what to do next

[Dara]

I finally really read the report again and figured out how to read the matrix. Boy this is depressing. Basically sammy is developmentally the age of a 26 month old (He turns 3 on monday) some of his skills are in the 14 month old range. Really, the problem is, we dont know what to do. We are looking at the theraputic school next thursday. Obviously, what we are currently doing, isnt enough. The dr gave us numbers of people and stuff but that doesnt really help. I dont really know where to even start. I dont know what the best thing to do. I am really out of my league here. I am so confused and depressed about it all. We are talking to the director of his school this week to see if she has any ideas (she usually has good ones) Sammy has his 3 year old checkup next week and the pediatrician got a copy of the report so we will talk to him and we will talk to Sammys therapist too. He goes for testing with the school district on july 30th. They did tell me yesterday that they are a bit concerned because it sounds like his sentences are rote not self generated so they are going to do more extensive testing to see what they can figure out. My head is spinning from all of this.

 

[SRL]

Dara, I know it would be depressing to come face to face with numbers like this but once again I want to emphasize that you not focus on where he's at on this developmental scale vs. where he should be. These numbers are general guidelines and Pervasive Developmental Disorder (PDD) kids frequently fall all over the place on them when they are young. It's also *very* normal for kids with Pervasive Developmental Disorder (PDD) to be spitting out mostly rote speech at this point if they had significant verbal delays. What you do need to do now is to make sure that you have a qualified speech-language pathologist in the picture from this point forward to help him a) learn rote speech that is appropriate for various situations and b) make the transition to spontaneous speech.

I do agree that maybe it's time to at least consider other therapy routes and because you live in a fairly large size metropolitan area determining the right course is likely confusing because you have so many more choices than many of us. Most of us have the choice of speech therapy, Occupational Therapist (OT), plus Special Education preschool vs. regular private preschool so this isn't such a daunting task. What I would recommend that you do next is to link up with the nearest Autism society and tap into the experiences and expertise of parents who are familiar with your local resources. Google Autism Society of America and you will find a list of chapters in your state. Parents of Autism Spectrum Disorders (ASD) kids praise the local school district programs to high heaven and many don't seek out additional therapies except perhaps private Occupational Therapist (OT)...but that's where I live.

I don't mean to make light of low test scores but I've seen enough reports of kids with Pervasive Developmental Disorder (PDD) score low at this age to take it with a grain of salt. Verbal language skills play a HUGE roll in a child's ability to learn and communicate what they've learned that until those are making significant strides you probably won't have a good grasp. Don't get caught up on these scores--use them as leverage to get good solid professional help for Sammy by professionals trained in their specialty areas.

 

[Dara]

I think it is really one thing to know in your mind that something is going on and pretty much know what it is but to see it written down in a "report" makes it so real and almost official. I dont think I was denial because we were activly dealing with it but I was in some kind of denial because it wasnt real until now. You are right, it is so hard to figure out where to go here because Houston is huge. I am hoping to find people in my area but most likely they will all be downtown. I am definatly try and hook up with these organizations in the area because parents are the best resource to have! Thank you!!

 

[SRL]

Yeah, seeing it in writing is the worst.

Dara, do check out everything but be sure and hook up with some parents of older kids in your own public school district. You may find out that there are some absolutely wonderful things happening right in your own backyard which would make things simpler, cheaper, and put Sammy into classroom/social settings with neighborhood kids which is always a huge plus in my book.

 

[Dara]

That really is part of my problem. I dont know a lot of people in my area. I used to work downtown and all of my friends and everyone I know is there. I only know a handful of people here and they dont have these issues. That is why I am going to try to find the local chapter of Autism society of america. That might help me find more info from parents.

 

[SRL]

Another resource to look for would be to call the special education department of your local school district and ask if there are any parent support groups in the area. Some school districts (ours included) have groups sponsored by the school; others will have them in the community.

Do an online search--sometimes larger cities will have online Autism or special needs forums made up of area families.

Both of these could yield some close to home help if they're in existance there.