Newly Diagnosed 3yr

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My son was diagnosed last Friday on the spectrum as high functioning. We thought they were going to refer some speech therapy and perhaps some therapy because of his OCD habits. Between the school’s IEP and the onslaught of medical appointments we are spinning, we have 10 appointment in this next month and ABA assessment(another 5-7) that is waiting for a therapist to be assigned. I have two case managers and I don’t even know why. I am very grateful that we have insurance that covers this and the school seems very receptive, but it just is so much. He has had no health problems so he has more doctors appointment in the next month than he has had in his entire life.

My little guy has some speech but it is very limited and intermittent. He will out of the blue say words we never heard before or full sentences and then not say another word for 4-5 hrs. I know he is clever and is extremely tech savvy, but because of his limited speech it makes knowing exactly what is going on difficult. Also he is quite willful so he often will understand what is asked of him and just chose not to do it. My concern now is what does this mean for him. He is the happiest, funniest little man I know. Is he high strung and quirky, yes, but he enjoys his world and his life. I want him to go to school, make friends and hopefully eventually live a somewhat independent life, but does that come with squashing all the wonder and joy out of him.

I feel like the entire medical community is about to descend upon him. I am sure all these incredible well-meaning professionals are going to work very hard to improve his delays. I just am afraid that all this therapy will make him feel like his isn’t perfect the way he is. I read about the level of depression with autism spectrum and I wonder how much of that is everyone forcing a square peg in a round hole.

How has it been for you and your little ones? I get the impression once you are on the autism wagon, there is no slowing down the train, even if it is too much too fast for the kid. Is that the case, or am I just interpreting this super efficiency as an onslaught? Is one of the multitude of professionals(Developmental Pediatrician, ABA Therapist, Mental Health Case Manager, Autism Case Manager, Speech Therapist, Occupational Therapist or the school team) someone who actually helps make sure this is the right path for my little guy, not just his diagnosis and delays?

Tracy

. Let me see if I understand. You have an educational diagnosis through the school and a medical diagnosis through a pediatrician and they both have assigned separate case managers and separate appointments? You don't have to agree to anything that is too much

I didn't go through this kind of juggernaut, so I won't be any help in telling you how to navigate this. We were referred to a shrink(who was useless) by the pediatrician, and we also pursued an educational diagnosis with the school district. The shrink was useless,and the school district did the ADOS and a good diagnostic process, so we left it at that. Any assistance we got was with the school. (ST and eventually OT) We did not choose/could not afford to do anything on our own. The ped was mainly interested in if he should be medicated--luckily the shrink did not recommend any meds--or I am sure we would have gotten grief for opting out of that.

I am sure someone else will chime in with how they managed what you are describing, and how to handle it when your ideas are different from what is recommended. In addition, I am sure you will get advice as to what people found worth while to pursue. The cynical side of me wonders if the more insurance one has, the more things are recommended. That does not mean the assistance is not valuable, but if you feel your little person is being overwhelmed, you may choose to pare down based on what you find helpful, and what you don't--although it is kind of hard to tell when you have so many treatments/therapies/variables.

It felt like we had to fight for every therapy my oldest ever got. He had Medicaid at the time. We didn't manage to get the autism diagnosis until this year when he was 13 (but we had quit trying for several years after he was school age and in homeschool). We had a case manager for DDS (Developmental Disability Services), who helped us get the initial paperworks and assessments set up and then we basically never heard from them again.

Helpful people: OT--Vastly, immensely, amazingly helpful, even considering we had one for 6 months that was useless, overall this has been the one that has helped my son the most. He had a lot of sensory issues as a small child, low muscle tone, and fine motor/visual motor integration problems, so his biggest needs were in the OT's domain.
ST--Very, very helpful. He couldn't speak where we could understand him over half the time until between 4 and 5, and only had a handful of words useful for communication when he turned 3 (part of it was lack of vocabulary and part of it was that his speech was so bad it was like a foreign language and no one could understand him)
Developmental Therapy--this one seems to be a position specific to the place he went as a child. I've not seen any other references to developmental therapy, but it basically covered goals that the OT didn't have time to work on, self help skills, social skills, and the things that would have been goals for PT during the times he didn't qualify for PT (he was always right on the border for PT. He'd qualify for 6 months, progress, test out, stagnate and then 6 months later be behind enough to qualify again. He was never able to learn physical skills without explicit teaching). Anyway, this one was an overflow and catchall, but this therapist was our hub. He saw her for 45 minutes a day, 5 days a week from 31 months to 63 months (when he started K). Others came and went as he qualified/didn't qualify, or they just moved assignments around, but this lady was with us the entire time and was great with my son.

We didn't deal with a counselor or mental health person until after he was in public school, and I have generally found them (we've dealt with several over the years) to be universally useless. The one saving grace was that for a year or two we had a case manager type from the counselor's office that came to our house. She was an outlet for me to talk to, helpful with different behavioral strategies, and just generally supportive.

We had the IEP meetings, the normal childhood check-ups (other than signing referrals, my doctor has never been involved). We never had ABA, and I am not sure that I would have agreed to it, if they had wanted to do it. He's prompt dependent enough as it is. Not sure if that is helpful or not, but what I remember.

That would be you. You are the ultimate case manager and decision maker. It's your job to look at all the therapies that are being suggested, to prioritize, and to set limits on how much is too much.

If you search on Autism Speaks First 100 Days Kit, they have a detailed plan on what to do for the first 12 weeks after a diagnosis.

Thank you all for your help and letting me know how this played out for you. I have downloaded the 100 Days Kit and both my husband have read it, it is very helpful. It seems that much of what is supposed to be spread over the first 30-40 days has happened in the first 4 for me.

I am glad you reminded me abut being the ultimate case manager. I am sure given more than a week, I will begin to feel like I have enough knowledge to do this. It is good to know that other people have found some allies in these professionals while we knowledge up.

Tracy

when they are little, services are much easier to come by. when they get older it is much harder. Take what you can get now. My son always LOVED his services. He does best 1:1 so it was perfect scenario for him.

hang in there!

That was the story of my life and I wasn't diagnosed until my late 40s. There's nothing like being constantly told that they way you think, speak, react, behave and do things is wrong, wrong, wrong and must be corrected, to leave you feeling like you don't belong in this world.

that is so sad!!

no one tells my son he is bad or wrong. When he talks about his services, I explain that they are there to help him with things he struggles with. he KNOWS writing is hard for him and understands that she is trying to help make it easier. for social skills group we talk about how it helps him and his friends learn how to have fun with others, and how he can help other kids and other friends who aren't in his group. in fact my son loves his social skills group so much, the first day back after a few weeks of summer break, he came out and told me how much fun he had and cant wait to go back next week, and how glad he is the break is over!

Not all services are gloom and doom. If you try to make a positive twist and INFORM your therapists that if and when your son asks, that they are there to make things more fun and easy for him, not that he is bad or wrong and needs changing. I don't feel that way about my son and I would...not be so nice to anyone who worked with him and did. My son has gotten EI services since birth due to a cleft lip and palate, he had speech starting at 15 months, then at 3 OT, speech , special ed class, then PT, as he got older he has had social group, etc, and he always loves his services. Now he gets speech (soon to be completed) and OT, social group and he loved them and his therapists.

It is so great to hear from all of you about how you handle all these services and keep your kids self esteem and self worth firmly in place. I am so relieved to hear that kids like these treatments. My husband had behavioral problems when he was a kid and my brother has dyslexia. Both had horrible times with therapy and treatments. Dull and drudgery at best and sometimes demeaning.

I remember hours and hours after a horrible day(it stressed him out and gave him stomach aches) at school my brother sitting at the table doing homework and therapy while we got to play. It is no way to be a kid. My brother had horrible anger problems as a teen and young adult which I believe were caused by this, he was such a happy kid. He hasn't really lived up to much of his potential because he has this idea he is less capable, even though he is very smart and dedicated employee. He is almost 40 and has only lived a handful of years on his own which never were successful. I know that was long time ago, but it really is all I know.

Thank you again for sharing. It really has helped make this week not seem like waiting for a death sentence of Teryn's happy childhood. Next week starts the barrage of appointments, so I guess it won't be all unknown soon.

Tracy