My 4 year old - Intro Post

[SarahO]

Hello everyone,

I'm new! Not new to child-related stress though.

We're in the process of having our 4 year old son assessed formally. So far it's just been an early intervention team. Tonight I'm taking him to our GP. Next we'll be either getting him seen by a developmental pediatrician or a psychologist. Part of the unknown for me, is exactly who to go to for the best 'overall' assessment. Our suspicion is Asperger's, and it was echoed by the Early intervention team, but I don't want to exclude all the other things that it might be. Sorry, this post is going to be all over the place because that's how my brain is right now. I figure you guys will understand.

Here's the 411 on my DS:

Twin A

• Born at 30 weeks, hospitalized for 8 weeks along with twin B. Jaundiced, bradycardia due to infection from PICC line. Otherwise, OK.
• Was followed for developmental milestones by the neonatal team, graduated from that at age 2. Some slight language delays but nothing serious.
• General observations about him since birth:
  • sleep...never. Seriously, a very , very difficult baby for sleep.
  • Same with feeding...from breast milk to formula to purees to solids, feeding has always been an extreme challenge. What he eats he eats in good sized portions, but he literally has had 3 or 4 items that he'll put in his mouth and outside that just will refuse food.
  • sensitivity to light and sounds.
  • clumsy - seems to "go" without looking, therefore falls, crashes into things etc all the time

More recent stuff:

• violent "rage" outbursts that seem to come out of nowhere.
• it's impossible to calm him when the switch turns on - he kicks, bites, pinches, shrieks in anger, and laughs hysterically during these episodes
• conversations seem very one sided. He talks "at" us more than he engages us.
• constant squirming
• defies everything, even if it's something he actually wants
• one-track playing: ie he will only play with dinosaurs, and when he does it's always the same...the big dinosaurs are going to kill all the other dinosaurs. I try to play with him and introduce a new theme...eg 'the dinosaurs are going to school today' and he will throw a fit.
• he will stack blocks up really high and be incredibly focused on this. if one doesn't sit quite right, he will scream in rage and knock them all down
• he doesn't seek out other children to play with. if he plays with his sister it has to be on his terms.
• he interrupts without seeming to even know he's doing it, and repeats the same thing over and over even if I say 'just a minute'.
• he does this thing with his head that husband and I call his Stevie Wonder...sort of a figure 8 with his head.
• his gaze...this could be imaginary but it seems like his eye contact is a bit off...maybe I'm seeing this because of all the reading I'm doing but I'll mention it anyway.

I could go on and on, but anyone out there have a similar behavior in their child? I could really use a friend, and advice on getting a diagnosis that takes into account the physical, emotional, behavioural, etc.

Sarah

 

[karif]

Hi,
So glad that you posted. Welcome. First off a big hug. Having a child with special needs is very difficult at best. My son also exhibits some of these traits. He is also 4 and we are also in the process of getting him evaluated. It does sound to me and of course I am no professional at all, that he might be on the autisim spectrum. It sounds like you are on the right track with the developmental pediatrician. I would also consult a psyciatrist or neuropsyc. Really push the doctors. Blessings and hopes that you find your answers.

 

[BusynMember]

Hi and welcome.

Although the Dev. Pediatrician may not see it, because they are basically looking for delays, which you don't have in Aspergers, he sure sounds like he is on the spectrum to me. I have a spectrum kid but it took us 11 years to get the diagnosis that we knew he had. Instead, he had a slew of other diagnosis. and tons of medications that he didn't need, so I hope you have better luck than I did. I sort of favor NeuroPsychs because they test in a whole different way and catch more stuff, however the first neuropsychologist my son saw said "autistic traits" but wouldn't give him the diagnosis. and said it was bipolar. He is sixteen now and obviously does not have bipolar, but obviously is different--he is on the spectrum.

Glad you came, but sorry you needed to be here. Just be very cautious about accepting a diagnosis at his young age and keep an open mind. Consider that the Dev. Pediatrician may be wrong at his young age...and make sure your son has a lot of school interventions. They really help, even if he is at age level or even gifted. Autism Spectrum Disorders (ASD) kids, and he presents at least with Autism Spectrum Disorders (ASD) symptoms, need interventioins even if they are brilliant. Does he ever repeat television commercials or recite whole episodes he sees on television and then maybe laugh?

 

[SarahO]

Thank you for your replies! Nice to feel welcomed and supported. Sheesh, it used to be fertility boards that I went to for support; then it was twin boards; now it's conduct disorders.

MidwestMom, no he doesn't recite TV commercials or anything like that. He does know all the different dinosaur species though (can show you the differences between an Allosaurus, T-Rex etc), and also work machines (identifies a combine harvester and a telescopic handler). I wouldn't say he exhibits any of the stereotypical savant stuff like Rainman but he's definitely not 'slow'.

I'll update you guys once I talk to our GP tonight. Can you enlighten me as to what a neuropsychologist does differently than a developmental pediatrician? Does a psychiatrist ever get involved in diagnosing or are they involved strictly once diagnosis is in place?

Thanks so much guys!!

 

[AnnieO]

You could be describing my difficult child 2. We just got started on the neuropsychologist route and are very impressed so far.

Does twin B have the same traits? And are they identical or fraternal?

Lotsa hugs too. It's a long road but there is a light...

 

[susiestar]

Welcome!!! A new friend is always a wonderful thing! I am glad you are here, but so sorry you need to be here.

From what you describe I would also guess aspergers or autistic spectrum disorder of some kind. Not all kids with Autism Spectrum Disorders (ASD) are the savant Rainman type of person. Your description does put up red flags, so it is important to discuss this with the people you see.

Has he been evaluated for any type of sensory problems? Sensory Integration Disorder (Sensory Integration Disorder (SID)) means that the brain does not cope with input from the senses in a "normal" way. Your son shows a number of signs of this. I recommend getting an evaluation by a PRIVATE occupational therapist. Schools do some assessments for this but they ONLY look for how it impacts school.

A private Occupational Therapist (OT) will see how it impacts all of his life. This may sound strange but I think Sensory Integration Disorder (SID) is a fascinating disorder. I have quite a bit of it myself, so I am NOT throwing stones at anyone! (as a toddler i HATED clothes. They called me "nudie susie" for a couple of years because I would just strip down as soon as I possibly could. Even though my clothes were soft (my mom was a firm believer that scratchy clothes were child abuse) and well fit I still hated wearing clothes. I even felt claustrophobic in them someitmes.

What I find awesome in Sensory Integration Disorder (SID) is there there is a non-medicine way to help! You have to be taught to do the brushing and joint compressions. An Occupational Therapist (OT) is the best person to teach you how to do it. It can make an almost immediate change. The brushing retrains your brain to handle sensory input!!!

If you are interested in Sensory Integration Disorder (SID), then teh book "The Out of Sync Child" by Carol Kranowitz has a wonderful overlook of the disorder and exactly what is going on in the brain.

The author also wrote a book called "The Out of Sync Child has Fun" which provides activiteis to meet the sensory needs - and ways to do them inexpensively!

Again, Welcome!!! Sending lots of hugs to your family.

 

[SRL]

Hi Sarah, Welcome to our forum.

Developmental pediatricians and neuropsychologists and in some cases psychiatrists can be involved in Autism Spectrum Disorders (ASD) diagnoses. Our suggestion is usually to stay away from the psychiatrists with the little ones as an initial assessment as their focus usually is on doing a fairly quick diagnosis and then treating symptoms through medications. Developmental pediatricians are physicians who specialize in childhood developmental issues, including Autism. Neuropyschologists are psychologists with extra training in diagnosing neurological issues and will do more extensive testing. Other specialists such as neurologists or psychologists staffing an Autism clinic may be involved.

Parents here generally have opinions on what specialty type is best based on what specialist worked well for them, but in my opinion the best specialist to go to is the one that parents have found best in your area for diagnosing or ruling out Autism Spectrum Disorders (ASD)'s. Your child's doctor is a good source but I'd also suggest contacting the nearest Autism Society of America chapter. It's a network of parents providing support and they will be able to tell you who is best at diagnosing/ruling out Autistic Spectrum Disorders in your region. That may wind up being a neuropsychologist, an Autism Clinic at a university or hospital, developmental pediatrician, etc.

Here are some other links that might be helpful to you:

Starting with a pediatrician
http://oreilly.com/medical/autism/news/getting_diag.html

Oasis-AS
http://www.aspergersyndrome.org/

Sensory Integration Dysfunction
http://www.tsbvi.edu/seehear/fall97/sensory.htm

 

[SarahO]

Reporting back after some further investigations! OK, so our GP was fairly useless but finally got us a referral to s developmental pediatricia, appointment is in two weeks. Alongside that, I've got DS into a private psychological assessment. We had our first 1.5 hour session last week, the second 1.5 hour session is today. I instantly liked this psychologist and I feel very confident in her. Phew! She is unable to formally comment until the assessment is complete, but she had some interesting "off the record" comments from last week's initial session. She said that two things strike her right off the bat....1) his high intelligence and 2) his low processing ability. She gave me an example that DS had built an entire complex village out of wooden blocks, but when she asked him to mimic her putting a red block next to a white one, he couldn't do it no matter how hard he tried. Huh! Fascinating stuff. Anyway, she is reserving putting labels on things but sees a pattern in his high intellect/low ability to sort or organize incoming information. I'm wondering...for those who've taken kids to a developmental pediatrician, what should I expect at the appointment? Would they do bloodwork and stuff or would it be more of a history-gathering?

Thanks guys!

Sarah

 

[SarahO]

An update! We have a diagnosis from the psychological assessment. ADHD and Non Verbal Learning Disability, specifically the flavor of Sensory Integration Dysfunction. I'm still learning so possibly I'm throwing these terms around incorrectly but this is I *think* what the report concludes. So, I've now got an appointment with the Early Interventionist that we've been assigned and she's going to be our conduit into the school (we start JK next week) for setting up the IEP and getting him an in-class assistant. Holy jumpin. Now we are simultaneously having a developmental pediatric assessment, but that won't be complete for probably another month or two. Hopefully there will be a similar diagnosis or at least they won't conflict entirely. Something interesting from the psychologist is that she (and I) were quite convinced that my son has Asperger's, but the data from the testing completely does not support that. She recommends we consider retesting in a year or two.

Is anyone else out there as confused as I am about the whole diagnostic process?! For example the psychologist in her report is emphasizing the Learning Disorder because apparently ADHD and sensory integration don't qualify for as many "perks" as a nice, well-known Learning Disorder. So she basically said to me that what she told me verbally is the "real story" and what's in the report is to make the school "act".

Remember in the movie The Exorcist (don't laugh) when Regan is being tested for all kinds of stuff and it's done in a hospital by a panel of experts? THAT's what I'm looking for, you know? Not a "he said she said" siloed approach where the psychiatric doesn't put much weight on what the pediatrician said, and the pediatrician thinks the psychiatric is a waste of time. I just wish they'd all talk to each other and put the child first instead of their egos.

Ah well. Deep breaths, right?

Sarah