SurvivingInfidelity.com^®

If you've had one of these, what was it like? What did they do?

I'm in the midst of filling out paperwork/gathering medical records for both this and a genetic testing appointment and just mentally exhausted. I need a psych eval myself.

It's always you and me in these things, huh girl?

We went through all of this for ds29. He was a little older when he had his first seizure...7 yrs old I think. But I remember filling out this family history that asked for information about every single sibling, parent, cousin, aunt, uncle, grandparent that had any sort of learning disability, developmental delay or mental illness. After 28 pages I just quit and decided it had to be enough info. I said to JM, "It's no wonder he's f*cked up! He's not related to anybody that's normal."

The genetics consult was really anticlimactic. There was no chromosomal abnormality to account for all the stuff he had going on.

After all of the paperwork and 3 full days of in person testing at the developmental pediatrics clinic, I'll never forget sitting in the developmental specialist's office to discuss the results. And this world-renowned developmental pediatrician said to me (in this really delightful New Zealand accent) "He's fascinating! He's simply fascinating!"

Yeah, because that's what I dreamed of, sitting beside his bassinet after he was born. That he'd one day be "fascinating" to a specialist.

"It's no wonder he's f*cked up! He's not related to anybody that's normal." 

HF, I'm SURE we share some DNA!!

Seriously, can they possibly make it any more stressful for you, Jana? MOJO for getting through the evaluation with no issues. If I lived nearby, I would be waiting for you after with a bottle of wine or whatever you choose.....

HFSSC, fortunately I made a copy of the genetics paperwork before I mailed it, because they asked a lot of the same questions (who remembers their newborn's APGAR scores? Not me). The entire page about pregnancy history was BRUTAL.

TWENTYEIGHT PAGES???? DAYUM

Fascinating is better than boring??? No, I'm sorry. That is not what you want to hear from a specialist.

His dad's first cousin has similar seizures, so I'm not going to be surprised if there's a genetic link. The psych eval I'm hoping will help with us understand his attention deficits and his emerging OCD behavior. The psych we are seeing has been recommended to me by his neurologist, his pediatrician, and his OT. I had heard there was an 8-month wait, so I was stunned to get an appointment 2 weeks after I called. His specialty is autism, but none of the other doctors he's seen seem to think he's on the spectrum. If he is he is, but I just want to make sure he's getting everything he needs. He's actually graduating OT tomorrow, so I'm really happy about that.

[This message edited by JanaGreen at 7:35 PM, March 22nd (Monday)]

Thank you, thebighurt! I could use a Big Wine.

Me!

My son was language delayed and I knew pretty much from the get go he was different than the average child, he was a horrible baby, inconsolable, etc.

So we went at 3.5, and had the full work up, lots of talking to him, playing games, stacking, sorting, etc to make sure fine motor skills were ok, etc. Only thing that came out of that was speech delay, did parents as teachers from then on 2 times a week, one day at the center, one day at my home. Worked wonders, had more issues in KG, further evaluation surveys for myself, grandparents, teachers, all to be told he has ADHD, and is brilliant.

Speech therapy continued at school until 3rd grade, he spoke well, and clearly by the end of KG, but he LOVED the chance to get out of class and the speech therapist at school, so he was smart enough to flub on testing for graduation of the program 3 times. Eventually she told I'm just passing him, without testing this time. Stinker.

He also was in REACH by 2nd grade with the other advanced students. So it isn't always all bad when they have a diagnosis and IEP.

He was easily overstimulated, and would have to leave the classroom at times until he got through 1st grade, he eventually learned how to deal with that to prevent the meltdowns, and he had some really good, really well educated young teachers for grades 1-4.

I was very fortunate that I live in a district that has the resources, and a state that funds Parents as Teachers program. This gave us a huge head start on issues prior to school.

BTW he was never formally diagnosed with anything other than ADHD, but he is definitely on the high end of the spectrum of autism. Those kids he was in the advanced program with became his best buddies and all the boys are still friends now and they are 24yo. They all came over last week for his birthday and took him out to dinner too.

Tush, I'll be stunned if he's not eventually diagnosed with ADHD. I started a low dose of adderall myself several months ago and it has done wonders for me. His dad also has every symptom in the book, but chooses to ignore it. So he would definitely get it honestly. That is so funny that your son was sandbagging the results to stay in therapy LOL. I suspect that my brother did the same thing with his speech therapy because his teacher was a pretty blonde.

Jana - I was a ritalin kid myself back in the day. So no surprise that he was ADHD too. Especially since it's on both sides of the family.

So, I just had the consult with the genetic doctor and I have all the feels.

They will be doing a microarray to look for missing or extra genetic material. They are also doing a panel that is specific to epilepsy. She said some things that have me pretty upset. I mean, I'm not blaming her, I'm just sad. My son's tested IQ was 90 (through the school system). She was asking about education level and academic ability in my family and his dad's. She said that even though he's technically "normal" per the school system and the general population, he's not really "normal" for his family. And there could be some genetic things at play. She said she has parents come in with older kids (like 18ish) who have just struggled in school and can't keep up, don't have the potential to get the type of job to have insurance/benefits (particularly important for a person with epilepsy). She said for someone with something like Downs, even if they were very high functioning and had an IQ in the normal range (above 70), no one would ever question that they would need services/help. But for someone without an OBVIOUS genetic defect who is technically normal intelligence-wise, it might be harder without proof of that defect to get help. I'm probably explaining this stupidly but hopefully it makes sense. But I'm very sad thinking of him struggling or feeling like he doesn't fit in. Everything is so easy for my daughter, academically. I'm worried that will just make him feel worse.

Of course, he could end up being absolutely fine.

Of course, he could end up being absolutely fine

Yes he may.

One thing i am learning is that we deal with what we know. Not with what we think or feel or may be.

12 years of advocating for my kids, tests, doctors, more tests and still no real answers. Genetics found a mutation that affects three of the four kids passed down from wh BUT so far none of them have the obvious physical symptoms. Of course they ALL have the physical features of another syndrome but not the genetic markers for it.

They are all different from their peers and yes they all know it. I just make sure they know that they are unique and its ok to be different.

As for not having an obvious issue or something that proves they need help, i made sure all of the doctors involved also got involved with their schools, wrote notes. The school was made very aware that the kids have issues and would need IEPs and things adjusted for them.

Hang in there mamma. You will get through this.

Thank you Dragn 💗💗

He's outside with his sister right now on the trampoline, singing and laughing and smiling his face off. I had a cry (and a 1 pm hard seltzer) and I feel somewhat better. There's nothing to do except keep swimming.

I saw a fb post last night of a mom who put herself in the corner for a time out ...with a glass of wine. I commented how lucky she was. Wh asked why. I replied that she had wine. He says "but you dont drink wine!" Which is true. So i reply with "at this point any alcohol would be good.

I'm surprised he didnt hand me the bottle of rubbing alcohol just to be a smart a$$ lol

And Jana he may have scored a 90 because he was in a room with a window and there were birds and clouds out there.

This is where ADHD comes into play. Deep breaths momma. Don't get to anxious until its all done.

If the school "iQ" test was a group one, it's not really AN IQ test, but a test of school abilities. My son consistently tested +-95 on those but 140+ on an individual test. He also was diagnosed with ADD, dyslexia and disgraphia. Some teachers were just above awful,labeling an ADD diagnosis as poor parenting

Be that bulldog mother. Accept nothing but excellent teachers.

And find things that play to his strengths. Soccer didn't work for my kid, he got too bored but swimming was perfect, he HAD to focus to not drown. And music was another source of affirmation even though it was initially tough. He finally began reading at age 9 when he began violin lessons and in a year was reading at an eighth grade level.

Kids develop differently even while schools all try to put each asymmetrical peg in those militantly square pegs.

It's worth the fight!

Thank you guys! I'm feeling better today. I just want him to have the best and happiest life and not be limited. I see him so much more confident after going through months of OT. The psychologist did say that he seemed very cognizant of the fact that he was being timed, and he seemed to be nervous about that. She also said that he was having trouble manipulating the blocks during part of the test due to holding his hands awkwardly. Having issues with his fine motor skills does not mean that he's not intelligent. She said that she thought that the score might be artificially low due to that. I honestly think that if he retook the test now he would be more confident and less nervous about the timing. Fine motor skills might still be an issue, but that doesn't mean he's not smart. He scored slightly above-average in his speech language assessment. He also is extremely emotionally intelligent, which I know is very important in life in general.

He may never be the academic whiz his sister is but that's ok. He's super happy and much beloved.

Lionne, funny you mention soccer - he's just started and while he's hilariously distracted on the field, he's also deliriously happy. Like, he runs around grinning the whole time. Nowhere near the ball. Just glad to be in the sunshine running around with friends. He's the human version of a golden retriever puppy on the soccer field.

And they get tired of the testing which lasts a long time.

My sons situation is different-he has auditory processing disorder, dyslexia, and some sensory disorders, too. The Dr at the children’s hospital said with therapy, we hope to get him to a 4th grade reading level.

But, by some incredible luck, in the 4th grade I convinced him to sign up for band for 5th grade. OMG!!!!! He was always behind in school, in resource. I told him that in band no one is ahead of anybody. That the kid who practices the most excels. The new brain pathways that were created with learning an instrument were un freaking unbelievable!!!!! He jumped from 1st grade reading level in 4th grade to class level in 7th grade. He stayed in band and is in a Div 1 college band. He also made 4 As and a B last semester!!!

So, continue to get him all the help he needs, (I know you will, anyway,) and take time for you, too... We drove 30 min each way 2xweek for OT PT Speech in school, etc. it’s so worth it. But the music really helped his brain connectors, etc.

Wow homewrecked! That is amazing!

My daughter is taking piano lessons from her older cousin and really enjoying it. We tried him on one lesson and decided that he was too young, but maybe in a year or so we can try again. That is wonderful about your son's progress after starting band!

This is for a preschooler??????

I wouldn't worry unless there is really something very obviously over one year late in the area of gross motor or language.

Of course, this is coming from experience and I very much DID worry when I was going through it. Nothing could make me cry like consultations with specialists.

If you are going to talk to doctors about these sorts of things, ask what the standard deviation is on measurement of ANYTHING for preschoolers. There is such a huge range at that age, it narrows later.

When my daughter was a preschooler, I had people come to me with concerns of her being on the spectrum, absolutely not the case, and she did genuinely have severe anxiety for a short period, but it became quite mild quite quickly. There's only one rule at young ages which is that everything is going to change in 6 months. And that as soon as you think you've gone two steps forward, you might find yourself 10 steps back for a time, and then leaping forward 20 steps again in a few months.

My daughter is now 7 and struggles with math. She asked me yesterday what 4 plus 1 is, and she is supposed to be doing three digit addition and subtraction at this point - it's just not sticking, bounces off her like a rubber ball. I am sure if I had assessments done, she'd be diagnosed with dyscalculia. But I am betting this is another delay that is developmental, something is just not in place for her to be receptive yet. My sister says my nephew was the same, and it self-corrected. So I am going to sit tight for a year to see what happens.

Anyway, just my thoughts.

HUGS to all worried mamas in the world. I am still one of them - the above is largely a speech I still need to give myself on a regular basis lol.

When my daughter was a preschooler, I had people come to me with concerns of her being on the spectrum, absolutely not the case,

Wow. Just wow. Why is there this assumption that they must be on the spectrum when the kid shows any difference or delay?!?

I had the same said to me about dd. She had a speech delay. Specialist after specialist. Until we finally got to Genetics and they said she had an extremely high pallet and that it would affect speech. She also is not on the spectrum.

Dd tried piano and it was a fad for her. Never stuck. Also all of my kids have very tiny hands, like scary tiny so i dont know which instrument would work, other than drums....for now we are just trying to figure out how they can use a computer keyboard.

Annanew, he has epilepsy and some fine motor delays/overt attention span issues that caused his neurologist to recommend this evaluation. It seems that neurological stuff like seizures doesn't occur in a vacuum and there are often other issues present. He's a preschooler in that he hasn't started school, but I redshirted him. He's going to be six in June. So young - but not THAT young, you know?

[This message edited by JanaGreen at 12:55 PM, March 24th (Wednesday)]