Pediatric Neuropsych wouldn't diagnose! Now what?

[Neesy]

Our boys are 9 and 11.  The eval. was a yr. ago.  We found the dr. not too far from our home and he was willing to do all of the testing in one long day.  He led us to believe it would be a thorough evaluation and then he would "make recommendations".  Welll...I guess he "did" make recommendations.  LOL....not really funny.

 

Anyway....we spent all this money and filled out tons of evaluation forms, etc.  According to the dr., "based on our answers (mom and dad)", the boys were 98% ADD/ADHD and ASD and that our youngest had ODD.  Then he said something like, "based on what he "saw" that day, he couldn't diagnose them conclusively".  WHAT!?  He did say they were both ID and that our youngest had an anxiety disorder.  He "didn't think" there was any dyslexia. :confused1:  Then he said it was "unlikely that our youngest had ADHD".  WHAT!??  He had ALREADY been diagnosed with THAT...that is the ONLY thing we were SURE of....since he was tiny. :cursing:  He literally ticks every SINGLE box for ADHD.  

 

Both boys are adopted (from birth) and at the neuropsych eval., the dr. explained the coding that was on the hospital papers to us.  We never paid any attention to that stuff and our adoption agency was very misleading.  The agency is no more and the lawyers have since lost their licenses to practice!  They are involved with several court cases.  Anyway, it turns out, there was substance abuse with both of our birthmoms (tested positive for alcohol and cocaine).  Both boys have symptoms of FAE (fetal alcohol effect). 

 

To top off our days with the neuropsych, his "conclusion" was that the boys needed to be in a public school setting to get "professional teaching".  He also recommended we take them to the nearest children's hospital to have an in-depth evaluation done.  Talk about a BAD day!   My husband and I felt like he was just reluctant to be the one to diagnose them.  He also gave NO help or advice as far as what types of therapy, etc. would help our boys....he just kept referring us to the hospital and that "they" could give more information about that! 

 

I tried different curriculums, "therapies", ideas, etc. over the last year with very little improvements.  Our oldest is reading better, though (about a1st/2nd gr. level).  So...with this new school year, I am not sure WHAT to do next/where to turn!   We do have a wonderful children's hospital about an hour from us and have heard good things about their evaluations.  It's just the idea of putting the boys through that AGAIN...and spending the money...AGAIN! :cursing:

 

ANY advice would be much appreciated.

 

Thanks!

[Princess Ariel]

nt

[Neesy]

PA ~ Thanks so much for your response.  You know, everything you said REALLY makes sense.  Probably what doc meant by, "He is a complicated case." 

 

As far as the fetal alcohol thing...we had done extensive research on it BEFORE we adopted.  Which is why on our form of "what we would consider" we put "no" to prenatal alcohol exposure, along with meth amphetamines.  I have several documents/articles printed off and they really tick a lot of boxes. :crying: I can't IMAGINE my life without these two blessings, though.  So..I guess God knew what He was doing...He knew if WE knew about the alcohol, we would have said, "no". :closedeyes:  Lately, I'm just SO sad all of the time when I think of their future.  ONE day at a time, though!  

 

Today, our 11 yr. old had a tally mark lesson in his math.  OH MY GOOOODNESSS!!  I could not for the life of me figure out how to get him to understand it!  :crying:  I thought it would be SO simple.  Then he'd say, "I can do this...I get it...I'm not in kindergarten!"...as he proceeded to do it wrong again and again.  We got popsicle sticks out, marker board, etc.  Poor guy, he was so frustrated.  He does know how to count by 5's, too...so it wasn't that.  It is just very frustrating.  Math has been a nightmare. 

 

Right now, the boys are "crashing" things...complete with loud noises and "dee, dee, dee's" and "ahhhhh...."(screams) , "chsschsschhhs", and "brrrhmm"s.  This is their FAVORITE thing to do and has been for several years now.  I just don't get it.  They LOVE to destroy things.  It's a constant battle.  And they are NEVER...EVER quiet.  There is ALWAYS some kind of noise coming out of their mouths...well, the youngest anyway(usually both of them).  He really struggles not making noise while I am teaching his older brother.  Siiiigh.....  I shouldn't complain, I know... I know I shouldn't!  I need to be thankful that they are VERBAL, right? :hurray:

 

One positive from the day, we now have a praying mantis habitat set up in our kitchen...right beside the tree frog habitat and the boys' goldfish.  LOL.  We have been studying insects, so Grandma's edition of the mantis was pretty cool.  We read about them and sat up the habitat today. 

 

Okay.... SO SORRY I'm RAMBLING!!!  It's just tough and I have no one really to talk to about any of this.  Hubby glazes over (too hard for him to handle) and friends don't understand (or worse yet, they don't believe me). 

 

I guess I don't know what I could "expect" from having them evaluated again.  Is there some kind of help, like government help if they actually get "labeled"...for therapy?  Will they refer us to specific therapists?  I just have no idea.  It would be nice to have a concrete answer.  Especially on the dyslexia thing...and if there is a specific math disorder.

 

Oh welllll..........time for more research!  I'm thinking of seeing how this school year goes and then maybe re-evaluate next summer..at the children's hospital. 

 

Thanks SO MUCH for taking the time to answer my plea!  Have a great week!  :seeya:    

[Princess Ariel]

Neesy, I am sending you a PM.

[hornblower]

I think if a pediatric neuropsych won't diagnose, it's because they can't. I think this dr behaved ethically and correctly - insufficient data or inability to interpret data or beyond scope of his practice - whatever. He's referring to specialists who have different skill sets, different modalities, different experience. Sometimes you just need to keep digging.

I only have peripheral knowledge of this topic but I know someone close to me who is an adoptive parent of 2, one of whom has FAS, found some of Gordon Neufeld's videos really helpful, esp I think the Adoption & Attachment http://neufeldinstitute.com/products/audio 
Obv this won't fix everything but I wonder if tweaking some things will make other things more manageable.

[Neesy]

The noisy boy play is fairly normal. Don't confuse that with the real issues. LOL

 

I have another son and plenty of nephews.  I know normal boys' noises and noisiness...perfectly normal.  THESE boys' noises are different and literally CONSTANT...the youngest, esp.  A lot of times it's drumming sounds, because he loves his drum set and is into that now (so there's drumming going on in his head constantly and it comes out his mouth) lol.  Other times, it's theme songs or parts of songs from cartoons or shows he has seen and as he re-enacts those scenes, the music comes with it.  It's random stuff too, a lot of gibberish and babbling that makes no sense (to me anyway)... not vrooomm....vrooooom while playing with cars or pow or bang when pretending.  It's just NOT a normal type of "boy noise". :-)  You'd have to hear it to understand, I guess. 

 

I normally tune it out because I'm so used to it and then other people "comment"... like my sister, friends, etc.  Some days though, it just....... gets to me.  You know?  On those particularly hormonal days when I hear and feel.........EVERYTHING.  LOL.

 

Anyway.... just wanted to clarify *MY* ramblings. :-)

[Neesy]

I think if a pediatric neuropsych won't diagnose, it's because they can't. I think this dr behaved ethically and correctly - insufficient data or inability to interpret data or beyond scope of his practice - whatever. He's referring to specialists who have different skill sets, different modalities, different experience. Sometimes you just need to keep digging.

 

I only have peripheral knowledge of this topic but I know someone close to me who is an adoptive parent of 2, one of whom has FAS, found some of Gordon Neufeld's videos really helpful, esp I think the Adoption & Attachment http://neufeldinstitute.com/products/audio 

Obv this won't fix everything but I wonder if tweaking some things will make other things more manageable.

:iagree:  about the neuropsych.  I think he did do the right thing.  It was just disappointing. 

 

I don't thing attachment is a problem with our boys.  We adopted them as infants and they are definitely loving and close to family members.  Our oldest however, will latch on to a "friend" he has just met and say he's his best friend, etc.  I blame that on the lack of social cues, etc. though, because he definitely has THAT problem.  They both show empathy and affection and our youngest more and more is showing some signs of reciprocity.  So.... I don't know?  I will check out your link though.

 

Tweaking...YES....TWEAKING is my middle name!  LOL :laugh:  Constantly, tweaking.....

 

THANKS!!

[Ottakee]

have you addressed the ADHD?  If not, I would start there.

 

Do either one or both of the boys have cognitive delays?  Some FAS kids do, others don't.  Our son is the most mentally impaired out of his siblings but other than 1 brother, he is the least behaviorally/emotionally impaired by the FAS.

 

Math is TOUGH TOUGH TOUGH with these kids.  I would honestly look at your son's abilities and decide, is learning tally marks REALLY needed?  For us, we dropped most math to try to focus on the very basics he needed (remember mine does have a cognitive impairment too) so we did basic money, time, measurements, etc.........stuff he needed for the real world.  It is still tough for him as math concepts are so hard.

[Neesy]

 

 

have you addressed the ADHD?  If not, I would start there.

 

Do either one or both of the boys have cognitive delays?  Some FAS kids do, others don't.  Our son is the most mentally impaired out of his siblings but other than 1 brother, he is the least behaviorally/emotionally impaired by the FAS.

 

Math is TOUGH TOUGH TOUGH with these kids.  I would honestly look at your son's abilities and decide, is learning tally marks REALLY needed?  For us, we dropped most math to try to focus on the very basics he needed (remember mine does have a cognitive impairment too) so we did basic money, time, measurements, etc.........stuff he needed for the real world.  It is still tough for him as math concepts are so hard.

 

_________________

 

Yes...been addressing the ADHD for 3 yrs. now.  Yes, both boys have cognitive delays (ID-very low IQ's).

 

Our daily Math lessons..... :angry: :willy_nilly: :mad: :scared: :sneaky2: :tongue_smilie:  :confused1:  MOM at the end of it- :ack2: :crying: LOL! 

 

GOOD point about the tally marks!!  LOL  I actually thought it would be something that could be helpful in real life.  The neuropsyche did say to concentrate on life skills.  I'm still in denial to some point, I think. :closedeyes: 

 

[Ottakee]

With the FAS and lower IQ you might need to really revamp what you are doing for school and figure out what is realistic for them.

 

My son with FAS has an IQ of 55.  HE is the person grandmas call to fix their computer, facebook, cordless telephones, etc.  He can use power tools and build things (also likes to take a lot of things apart) and is very hands/on mechanical.

 

IF though you ask him what 5=5 is, many days he will have to use his fingers..........seriously.  He sorta gets money but not the relative value as in how much $200 is really compared to $2 or $20.  Time is still hard and he will ask me, " how long is 5 minutes"/........usually meaning that he can't figure out what time it will be in 5 minutes.

 

He has great social skills which is very helpful and good athletic ability which again is very helpful to a boy.

 

He can read at about a 3rd/4th grade level but still has trouble reading the directions on the package of a pot pie to figure out how long to set the timer on the microwave for............as the package says 4-5 minutes and he knows it is not *45* but can't figure out if he should do 4 or 5 or how to do 4 1/2 minutes.

[Neesy]

Boy, that all sounds very familiar.  Does he remember past events...places, people, who said what, what they were wearing, etc.too?  Our oldest does that....he'll go back YEARS sometimes.  He also remembers directions and how to get pretty much anywhere we've ever been...even street names.  But he can't remember a math fact to save his life.  I know he's very frustrated with that.  HOW/when did you tell your son he has a learning difficulty?  We haven't "formally" discussed it.  I know he knows, though.  I just got two books from the library to read to them.  Eagle Eyes and The Don't Give Up Kid (Jeanne Gehret).  

 

Our youngest boy is VERY interested in how things work. He is constantly making his own toys and pretending random things are "something else". lol  Both boys know every detail there is to know about farming.  Hubby and grandpa take them all day a couple days each week and the boys LOVE it.  I could see them doing that when they're grown...with Dad.  Our oldest has been in 4H since he was 9, too.  Last year, he got 2nd in showmanship with his goat...I discouraged Dad from putting him in the show, because I was SO worried that he'd embarrass himself in front of the other kids and all of the audience.  This year, he WON!  He was up against almost 20 other children and their goats.  He knew every question the judge asked him and he showed that goat with confidence and was totally calm the entire time...all business.  LOL.  Talk about a PROUD mama.  Oh yes, and Daddy last year said to me, "SEE...told you he could do it!".  GO, DAD!  :thumbup1:

 

Anyway...  you are absolutely right.  I need to REVAMP and figure that out...what is realistic for them. One positive, they both LOVE to be read to.  :thumbup:  We also do lots of Legos.  Had them doing the kits (following the book directions) all summer. Our youngest is actually better at it than our oldest.  He gets pretty frustrated at times.  Either I or their older sister sit down with them and help them stay on track following the book.  Our oldest has trouble with the diagrams and transferring the 3D drawings to the actual thing he is building.  Cooking is something else they really like (math!).  I just discovered this past week that our oldest really enjoys mapwork....and he did an awesome job, too.  The youngest loves music and will remember anything put to music.  We are starting 100 Sheep (skip counting songs) next week!  Our adult children still sing those songs!  lol  Oh, and we now have a fully functioning ant farm. LOL  They have been fascinated with that. :)

 

One of our boys (youngest) is very athletic...way more than any boys his age, but he really struggles with rules of the game and remembering plays, etc. as well as social interaction.  Our oldest is rather clumsy and he's a big boy for his age, always has been....think The Blindside (movie w/ S. Bullock). lol  Anyway... he too struggles with the rules and plays.  He is very friendly and loves to make friends, not shy at all.  But...the other boys know he's different because he struggles so much.  Last basketball season, the other boys laughed at him because when he would fall down (which was often), his legs would usually go up in the air and I swear, it looked like he was falling in slow motion. Siiigh.... This is all so very hard. :crying:   I'm just SO grateful for homeschooling.  So grateful.  I shudder to think how they'd be treated in a public school setting.  Our oldest though...he wants to go to public school and be "like" other kids.  Even though his older siblings were homeschooled. He keeps telling me how he's not going to stay home all through highschool.  His older three siblings went to school for sports in highschool.  Well, not the oldest...she went to a Christian highschool when she was a junior.

 

Anyway... I've rambled on long enough.  Thank you so much for your input!  I really appreciate it. :)

 

P.S.  I am curious what curriculum you would recommend that worked/is working for your kiddos??  Share if you feel like it, no problem at all if you don't!  Take care...have a good week!

[Ottakee]

I will catch up more later when I have time but our son----adopted at age 7 could point out the house where he lived in a large city and he lived there when he was FOUR.  Couldn't find the window in the living room the other day when I asked him to shut it but could find a run down house in a large city..........yep, fits with fetal alcohol

[Ottakee]

For sports we found that we had much better luck with individual sports rather than team ones....bowling, cycling, swimming, downhill skiing, etc.  Very simple rules and what he did didn't change based on what everyone else was doing---as in team sports.  Special Olympics has kids of all athletic ability levels so that might be an option and is free and lots of fun for the kids.

 

As to school, it obviously depends on the child, what the schools have to offer, etc. but my kids all started in 7th grade and it has been a very positive thing.  Our school has a great special education program and lots and lots of opportunities for these kids.  My 2 girls are in job training settings 2 hours a day now and loving that.  They like it as it gives them a "normal" teen experience but geared to their level..........and it gives them peers/friends.

[Jennifer132]

Here we have a clinic at the children's hospital that does research and evaluations on children exposed to drugs and alchohol in utero. You might see if the children's hospital/major university near you does anything like that. My dd has been involved with the research clinic since she was 4 months old. They have a lot more experience seeing kids with exposure and can accurately diagnose the issues you speak of, as well as provide referrals for services. My dd tested positive for cocaine at birth, and birth mom admitted to extensive drug, alchohol and tobacco use during pregnancy. The clinic did find some physical features that indicated fetal alchohol, but not enough to warrant a diagnosis. She was later diagnosed with CP with drug exposure as the cause.

[Neesy]

Ottakee, Jennifer...  Thanks so much for sharing!  It helps knowing others are dealing with the same things and there's hope as our guys grow up! 

 

Our adoption agency called us on our way to pick up our youngest to tell us birthmom tested positive for cocaine when she arrived at hospital to deliver. :angry:  He of course was positive as well. :crying:  We only found out about the alcohol last year when the pediatric neuropsyche deciphered the hospital paper's codes for us.  Talk about a SAD and shocking moment.  We had NO idea and in fact had been told there was NO alcohol use whatsoever.  Siiiigh.......  That's a whole OTHER story...our agency! :cursing: 

 

Wouldn't have it any other way, though!  I can't IMAGINE not having our sweet boys! :001_wub:  Just can't imagine it! 

Thanks again for popping in!

 

[RockstarMom]

As far as the fetal alcohol thing...we had done extensive research on it BEFORE we adopted.  Which is why on our form of "what we would consider" we put "no" to prenatal alcohol exposure, along with meth amphetamines.  I have several documents/articles printed off and they really tick a lot of boxes. :crying: I can't IMAGINE my life without these two blessings, though.  So..I guess God knew what He was doing...He knew if WE knew about the alcohol, we would have said, "no". :closedeyes:  Lately, I'm just SO sad all of the time when I think of their future.  ONE day at a time, though!      

 

Yeah, that's the thing about adopting... you never know the truth about what another person puts in their body when they are pregnant. We said yes to a lot of things, alcohol was not one of them. We have two on the FASD spectrum. One child is in public school, in Gifted and Talented classes and doing VERY well (though a little socially awkward and has behaviors that COULD be explained by his ADD). Our younger son has the rages, the melt-downs, the aggression and he's 9 some days and 3 other days.

 

I haven't homeschooled in years but thought of this forum immediately when the reality started to sink in that I'm going to need to homeschool my 9 year old. Searching for FASD homeschooling resources with very little success. But good to know I am not alone.