More Q & A's about Jackie and MERLD

At what age was Jack diagnosed with ASD and who diagnosed him?

It was the day after his 5th birthday, December 2005:  Boy in the Snow.  We took him to the most respected children's hospital in *possibly* the world (half hour away from where we lived).  Google children's hospital Indianapolis, and it will pop up immediately. 

We know this hospital performs miracles every day.  They saved the life of the son of dear friends after a terrible bike accident.  But their department for diagnosing children with ASD is pretty notoriously broad-sweeping and heavy handed in this state.   Something we didn't learn until after.  Jack's examination was 9 hours long, and we went in with prejudicial paperwork from his preschool teachers who hadn't expressed any of the concerns listed until the second half of his school year... the point at which they changed the expectations from 3-year-olds getting a feel for being out of the home and in and amongst their peers, to 3-year-olds sitting in chairs coloring block letters and making crafts, aka "pre-reading" skills.  (Jack taught himself how to read before he started 3-year-old preschool.)  He threw a fit one day in school because he wouldn't take his socks off to put his feet in paint, and from then on avoided the teacher who insisted that if he just got his feet in the paint, all would be fine.  "He didn't interact with me today... AGAIN," she told me in the hallway one afternoon.  "Which is weird, because he's just fine with the teacher's aide."  Interesting.

I see verbal children throwing tantrums all the time, but non-verbal = autism, plain and simple.  All the keywords were put into his teacher evaluation and my blathering on about every tiny detail sparked the greenlight for an ASD diagnosis.

Did you always feel that it was wrong?

Yes, but it is really difficult to go against everyone else, so I doubted my own instincts on the matter--not him, and so wavered for about a month, then got sick of the sympathetic, "But this is a GOOD thing," conversations. "This means he'll get access to free help, right?  And it means NOW YOU KNOW what's wrong with him!"  Enough talks like that, I started to openly rebel:   With Sprinkles in my Eyes.

It was the paperwork from the children's hospital that finally did it.  The child they described for the report was not my kid... at all.  I couldn't finish reading the report, it was so blatantly biased, misleading and wrong.

I finally read the books on late talking by Thomas Sowell.  They gave me hope.

And at what age was he diagnosed with MERLD and who diagnosed that?

He was diagnosed MERLD and taken off the spectrum a year and two months later, so at age 6, mid-way through Kindergarten.

Sowell's books recommended the Camaratas in Tennessee.  We did not set up an appointment with them right after the ASD diagnosis, however.  FIRST, Jack was evaluated again by his school system, and they found him to be just fine, very bright in fact, and they were curious as to why someone would have recommended that he attend developmental preschool before Kindergarten considering how far ahead he was in learning. *The evaluator was an amazing lady.  Jack took to her right away and interacted with her the entire time.

The lady I'd spoken to on the phone about placing Jack in the developmental preschool program (that next step recommended by the hospital after the ASD diagnosis) patiently waited as I struggled through my second official break down (the one which made me feel like I was selling out my son for free services) ((NOT that I don't wishes services were readily available to EVERY child)), got very quiet, then sympathetically told me it was our right to have him evaluated again without taking the ASD paperwork along -- get an unbiased second opinion, in other words.  So the school system's second opinion was, 'WTH?  This kid is doing great! This kid can READ!! See you in the fall, folks.'  That was about a month or two after being put on the spectrum -- "A little bit behind in speech," they agreed, so speech was to be provided, but he was considered way ahead of the Kindgarten learning requirements...

Did you mainstream him in Kindergarten or special ed?

We did mainstream for Kindergarten, per the recommendation of the school's evaluation/not having given them the ASD paperwork, and this is when everything went to hell.

Totally wrong fit with his teacher.  She told us herself she's a pretty big deal - arrogance, wound too tight, absolutely no flexibility, at the first sign of any trouble/different learning style required, she was calling for reinforcements (she already had a full time aide in her room pursuing a Master's degree, even)--which set the chain reaction of the school needing to find the budgeting for reinforcments...  By the end of that year, Tom had been volunteering one day a week and the teacher had started giving him not just our son, but ALL THE BOYS to help out.  Most of them were miserable, Tom noted.  She couldn't teach boys, squirmy children, children who struggled paying attention, children who hated coloring, children who struggled with reading... and had disciplinary methods in place like forcing a child to draw pictures of positive choice options for minor infractions such as... Jack cut in line one day to use the bathroom (as I'm sure that meant he was about to wet himself), and as soon as he came out of the bathroom, was told he was in trouble and had to draw a picture of what he did wrong, plus what he should have done -- AS SOON AS HE GOT OUT OF THE BATHROOM.  He had no idea what he should have done instead of peeing when he needed to pee, so he eventually freaked out knowing he was getting into more trouble for not drawing the stupid picture correctly (by this time he'd been in trouble like this quite a bit and was getting sick of the crazy rules).  I got a note from the teacher asking if there was something going on at home that was causing our son to get so worked up so easily.  I wanted to go into her classroom and demand she draw a picture of HERSELF wetting HER pants and see how that made HER feel, but I was a freaking wimp back then.

Also, a totally wrong fit with his first speech therapist, who agreed with the teacher that Jack must have autism (and by "autism" I mean their definition:  "kids who can't be taught"), otherwise why else would he be struggling under their totalitarian rule?? and so they ambushed Tom in a meeting that he thought was just going to be fifteen minutes or so, got him to admit Jack had been to the children's hospital and given more than just a delayed speech diagnosis.  He said the A word, and they swooped.  All smiles, all papers, "Just sign here and everyone will be happy again," but he didn't sign because he knew how I felt, and that really pissed them off -- especially the teacher.  I went back in to speak with the school counselor and she stared me down, even through uncontrolled tears.  I said, "We will get him another evaluation.  There's a place in Tennessee that specializes in speech disorders.  It's just that they're so busy, we can't get him in for an evaluation until February."  She said, "You're entitled to do what you feel is right, and we will look at the findings, but no matter what their evaluation comes up with, we will have to do what's best for the school."

Keep in mind... Jack was not hurting anyone.  He was blurting out the answers to the vocabulary words (or cutting in line ONCE for the bathroom).  He was patting kids on the shoulders to let them know he liked them.  "Jack needs to stop hugging.  That will not be allowed in first grade."  -signed, Jack's Kindergarten teacher.  He was struggling to follow verbal directions, having his every move nitpicked daily... day after excruciating day.  We were naive.  We didn't know how different one school can be from another.  We didn't realize a school could be prejudice against a kid.

And he was learning that every time he interacted, he was going to get the wrath of his annoyed teacher -- so I regret that very much, him having to experience that year in that environment.  But he never did anything that deserved someone to say, "We will do what's best for the school."

Speech therapist also told Tom that she was seeing 1/3 rd of the students for speech and did not have enough time for the amount of speech Jack needed...unless we handed over the ASD diagnosis.  And then, after putting us through those meetings, she quit and went on to another position elsewhere. 

Thankfully, Jack's second speech therapist was a kind and intelligent woman who knew she'd found something unique in Jack.  She began removing him from the classroom to sit through sessions with her, in large part to protect him from getting into trouble for speaking out of turn during reading class.

So he was mainstreamed, and it went poorly -- at that school.  Had we known, been able to afford it, had a time machine to take us back... we would have moved to our current school district so that he could attend Kindergarten here and he would have had an entirely different experience.  I know it.  They would not have spent the year putting him in the hallway for speaking out of turn.  They would have embraced his early reading and found something positive for him to do while the other kids learned words he already knew.  He would have had more speech, less punishment, and the entire household would have been spared an incredible amount of unnecessary anxiety. 

We are super lucky that our school district gets it.  I hear story after story about regions very similar to our Kindergarten situation, and in those cases, I would recommend finding a special school... so long as it is a positive option and not a stifling one.  Late talkers are often confused for being less intelligent than they are, and this contributes to the detachment, shyness, distrust that others will welcome them for who they are.  Even special programs within schools often make this mistake of underestimating children, and then it just goes downhill fast.  The more the child rebels out of shame, the more it's used as proof that progress is just never possible...

For some, like us, mainstream works because the school is fantastic at it.  We also knew Jack could handle it so long as he had a patient teacher to start him off, give him a chance for that "difficult" year of transitioning (and his first grade teacher was that wonderful patient teacher who told us right away that she knew he could do it...)  Other children, other personalities, the choice is individualized.  You basically have to feel through with your heart and guts, knowing your child and who your child responds to, because the most important factor is, 'Will my kid feel comfortable with this person in this space?'  The teacher can be credentialed out the wazoo, but if they don't adapt or show an empathetic, trust building core, school's going to be constant stress for all involved.  You've got teachers who believe special needs is not their job, and others who see every child as a unique canvas -- who actually appreciate a MERLD child who provides the opportunity to explore other creative learning options -- which are often great options for ALL of the other children...

Do you think it's important for me to take my child to a specialist for a real diagnosis at this age and do you have a recommendation?

I would get in touch with the Camaratas in Tennessee.  They're the only early childhood evaluation group I know and have had experience with that I trust.  Age two seems young for any evaluator to really be sure, but if you're looking into 3-year-old preschool, and that timeline is adding pressure, I do admit it would have been much better for all concerned if I'd been able to have said to Jack's preschool teachers, "Jack has a language delay and here's everything you need to know about it..." versus them speculating, Jack getting pinballed, and the paper trail getting started for a misdiagnosis.

Should I try private speech therapy rather than EI?

I found this discussion board:  Early Intervention versus Private Speech

If it's important to you right now (versus waiting a year), the expense isn't a concern AND you can find a speech therapist who knows what MERLD is and has even had experience with it/ or is willing to discuss proper therapy for it with the Camaratas, that would be a strong option.

Jack had no speech until Kindergarten, and for the first two months of that, had the wrong speech therapy.  He has had incredible speech help through his current school experience (they DID call the Camaratas) since then, which is probably above the normal, so it balanced out.  Again, it all depends on what is available to you... but a true late talker is going to talk.  The real issue is making the social adjustments after talking, and some habits start to stick depending on the child's personality to begin with (shyness, lowered self esteem, etc.) ... For instance, Jack is still very uncomfortable around the same people who made him feel pressured to speak age appropriately when he was younger.  There's an energy about them that translates as, "Easily disappointed, high maintenance," which he naturally avoids like a person with a bee allergy avoids a bee.

Maybe the best advice is to try it one or the other (whichever fits best), and if it doesn't feel right, stop. 

But if finances are a problem, the Camaratas rightfully pointed out that Jack's little sister would be his best speech coach.  Not all kids are a good match, but supportive siblings/cousins are about the best you can get.

Where we are now without positive outside intervention until age 6:

Jack swimming laps.  At age 12, he is finally focused on improving his swimming technique.  It helps a lot that his instructor is an adorable high school girl.  *He did ten laps that day.  Exercise is so helpful for his thought processing.

 

Jack opening his letter from his pen pal (also a late talker).  She's an older pretty girl, so he told me he'd like to read it in private.  I heard him in the other room say aloud, "Awww, that is so nice."

*Pretty normal stuff.

 

Told him since he's 12, he's going to start having one night a week that he's in charge of making dinner.  He really likes that responsibility. 

*Healthy eating takes a short second to exercise around here. -Yes, that's organic sauce.  We ran out of the homemade from our own garden stuff.

 

His sister asked him to check her homework.

He likes doing that, too, AND he's quite thorough.

 

 

He's always got us.  One place to be himself.

That has always helped the most.



© Copyright 2013 Angeline Larimer