turns out.....

[wtnhunt]

Had a few replies to a post end of last summer about our 6 year old son, so figured I would give an update.  His teacher pushed for us to get him to his pediatrician and have him be medicated for adhd, she did not have time to deal with him in the classroom because she needed all her time to work with the other children to get them to the state standards.  Her suggestion was that medicine would help him focus and help him with his schoolwork.  Wife being a registered nurse for nearly 20 years said we are not medicating our son just because some burned out teacher does not want to do her job and deal with our 6 year old.  He had been assessed by developmental psychologists before twice due to delays in his speech and some other issues.  We had taken him to the Boling childrens developmental center in Memphis when he was between 2 and 3 and they said he was not autistic, but had atypical behaviors and showed some autistic like symptoms, but her report said he was not on the autism spectrum.  Then in kindergarten they had a child psychologist come in and assessed him and they rated him with the test and his score evidently did have him fall on the spectrum, but again that doctor said he was not autistic.  

So we get to this year and all the issues with him acting up in class and his primary teacher not properly handling things.  We have had a couple iep meetings this year and have nothing but good to say for his special education teacher but his first grade teacher not so much.  I got him in to his pediatrician after he started having self destructive behavior, scratching and hitting himself mostly at school when getting upset.  As it turns out now there is a child psychologist at the same clinic his pediatrician is in, so I get him in with her.  After a couple meetings with the child psychologist, someone who clearly understood what she was doing, we now know that he is in fact very high functioning autistic.  She did not iq test him again, but the impression we got was that his iq score from the school of 118 was probably also not accurate and likely on the low end since he struggled with working memory and that hit his score hard.  From what the psychologist said the person who assessed him at the school evidently did not even have the training to give the test they gave, that special training is required and that was probably why he missed proper diagnosis.  

Anyway, a lot makes more sense now.  Have another upcoming iep meeting with the school.  He is above average in all his testing we get back, but has social issues which are to be understood.  Hopefully we get some better results with the recent report in the upcoming meeting.  

[markyj987]

I wasn't around for the prior post but having read the above, I'm happy that you and your wife didn't give up on finding an answer.  Friends of mine with autistic children seem to have similar stories--where getting a diagnosis is very difficult.

Your son is blessed to have you and your wife as his advocates.  Now that you have a diagnosis, you and your wife can begin to equip yourselves and your son.  It will take a great deal of effort, be frustrating, and (often) be expensive, but your investment in him will be well worth it.  My colleague's son is high-functioning and is now about 13 years old.  He was diagnosed maybe 6 years ago and has been given tools to help himself adapt to different circumstances and is excelling.  I'm optimistic your son will do well also!

 

[Adjam5]

My prayers for your family William. Hope he gets the help he needs. I know he is getting the love.

[wtnhunt]

Going back, my wife and I knew he should have been diagnosed somewhere on the spectrum but had SOOOO much misinformation given to us even by some professionals. He had too many developmental speech delays and other issues.  

On 4/3/2018 at 6:41 PM, markyj987 said:

Friends of mine with autistic children seem to have similar stories--where getting a diagnosis is very difficult.

Your son is blessed to have you and your wife as his advocates.  Now that you have a diagnosis, you and your wife can begin to equip yourselves and your son.  It will take a great deal of effort, be frustrating, and (often) be expensive, but your investment in him will be well worth it.  My colleague's son is high-functioning and is now about 13 years old.  He was diagnosed maybe 6 years ago and has been given tools to help himself adapt to different circumstances and is excelling.  I'm optimistic your son will do well also!

Thanks Mark, it has been time consuming to date, no doubt about it.  He had speech therapy twice a week from age 2 to 3 and occupational therapy once a week to help with his sensory and motor skills during that same time frame.  I had a lot of 25 mile one way trips for therapy for him.  Then we were fortunate enough to get him in the public school system early pre-k program where he was qualified to meet special education needs under an iep of "developmental delays".   That was a half day program, so had to be able to pick him up late in the mornings 4 days a week, so extra trips there too.  From what the child psychologist told us, he never should have been kept that long with a need for special ed services based under "developmental delays".  That is supposed to be temporary, but he has been kept in the system under that same need for over 3 years.  We are thankful for the schools special ed program, his teachers in the special ed program are truly caring teachers and we had been pretty lucky for him to have good kindergarten and pre school teachers as well. 

The psychologist told us it is common for kids who are on the spectrum with above average intelligence to overcompensate and they can do very well academically, which confuses people who are not aware.  Another common misunderstanding is with kids lacking any emotion or empathy, it can be right opposite, which again can be confusing.  It is pretty sad to think how many kids likely get missed with getting the help they need due to lack of diagnosis or even more so with improper diagnosis, especially with what we see going on in the world in this day and age.  We sat in an iep meeting at the end of last year with his teachers and the principal, the principal told us he was late in life(late 40's) diagnosed with adhd and also was pushing that he felt Will was adhd.  The principal said he wondered how he ever made it through college that he struggled horribly and likely would have done much better had he been medicated like he is now.  Nothing about anything this kid was doing was attention seeking or due to hyperactivity, and he has no deficit with attention focus with things that to him are not "boring".  The 1st grade teacher and principal both were wrong and honestly could get in trouble for their speculations, but I am actually glad they pushed to get him to his pediatrician and to look at getting him on medicine.      

 While he continues to struggle with social issues, he has done well with adapting in other areas and continues to do really well with academics.  We hope with the upcoming meeting at the school next week that we can get a better plan to help him be better directed and maybe things will be easier for them to plan as well.  His regular teacher was taking away activities he likes and it would snowball and at times end in him engaging in self harming behaviors.  The psychologist told us that taking away activities is the worst thing they can do and she even put that in her plan that we sent a copy of to the school.  At home he responds better to positive reinforcement than he does to punishment. Broke my heart picking him up one afternoon and he had blood on his face where he scratched himself because another kid told him he was being a "bad boy", took quite some time for him to even talk to me to tell me what happened.   

On 4/3/2018 at 6:42 PM, Adjam5 said:

My prayers for your family William. Hope he gets the help he needs. I know he is getting the love.

Thank you Anthony.  Will is otherwise a perfectly healthy and active 6 year old. I know we are blessed, because things could be much worse.  I am hopeful he will overcome most of the things that he struggles with now and eventually grow up to live a normal life.  
 

[MUDRUNNER]

Glad you are finally getting some answers William. Now at least you can get some direction on what the little guy needs to help him and relieve some of the stress. Most initial diagnosis for just about anything these days is the "low hanging fruit" which tends to be wrong quite often.