3rd neuro appointment

[mich97]

my son has his 3rd neuro appt.w/ same MD coming up in Nov. She is just following my son to monitor his progress/delays....I have some questions/concerns..i come here once in a while and people have been very helpful..i will try to give the short version of my journey w/ my son..

my son is 5 now..he is in a regular full day kindergarten class..he is on an IEP..he gets pulled for speech, academics and behavior thru' out the day.....already after the first week i was told we may need to re-do his IEP b/c they feel he should be in the regular class rm more..he is doing well,listens to the teacher and has an aide in the regular class rm...i suppose at this age we will be adjusting that often b/c age 4,5,6 can make huge differences developmentally.. anyways, i spoke to the new (to my son this year)sped teacher last week and she told me that my son talks about tornados frequently and needs to be re-directed to tasks,plays w/ his fingers all day...i updated this  teacher that i had already seen the ped. neuro MD w/ concerns and it was not felt my son was on the spectrum....the teacher responded, "i can see how u would be concerned b/c she did see characteristics too"...

Now, of course i am back to this point of thinking OMG is my son on the spectrum??does this teacher think so?? are we missing something? is he flying right under the radar and this neurologist is not picking up on it?? no doubt my son makes some professionals scratch their head...his pediatrician and neuro. md do not think he is on the spectrum...we know he has speech/language delays,sensory intergration issues,possible ADHD...
when i go see the neuro MD in Nov. should i request another specialist?? my husband gets annoyed w/ me b/c i worry about this often..he said, "what are u going to do bring him to every specialist in the state till someone says yes he is on the spectrum?" that is not my intent, i just want to be 100% sure we are not mis-diagnosing this child!!!
i will give some examples why i question he is/isn't on the spectrum...

my concerns: he has always been a "rocker" he rocks on the couch while watching tv ONLY..(btw my 18 mo daughter does it now w/ him,i know she is copying him hahahaha..)my son NEEDS to do it..he use to do an occasional hand flap,i never see him do it now...his new thing is he plays w/ his fingers,twists them,pushes finger tips together and sometimes puts in mouth..again,this is new maybe started 2 months ago..is it a OCD???he echos people/noises at times..he went thru' a phase he echoed noises a lot now he doesn't really do it..he still will continue to echo statements at times, again it's occasional!!!example: at the bus stop this AM one of the boys made a statement "girls are disgusting" my son kept repeating it over and over and laughing in between!!! he has been known to be noise sensitive at times but seems to be "outgrowing"...however, to this day he does not like when people sing Happy Bday..at every bday party i have to warn him the singing is coming so he can hide in the bathroom!!! if he were to be in the room when people were singing happy bday he would scream "NO" and franticaly try to get out of the room...he seems to go thru' phases were he is obsessed w/ things...don't know if i'm over anaylizing this one...he is obsessed w/ weather, tornados,storms etc etc..i can easily re-direct or change the subjuect no problem..also, he is still obsessed w/ thomas..he will absolutely play w/ other toys esp if that's what his friends are doing..he just prefers thomas when playing byself or if u bring him to store he still only wants to buy thomas stuff...at age 5 i notice most kids have moved on from thomas...i know developmentally my son is still into b/c his delays...he can't follow/comprehend watching a starwars movie as other 5 y.o. can...he will play pre-tend have saber fights but i know he does not understand the story line...
my son has always had great eye contact and been very social..has many friendships and plays/interacts w/ kids..he points things out and shows me/people things all day..he picks up on facial expressions..he adapts well even w/ his delays...i've seen some "typical" kids get frustrated w/ him and he responds to it,adapts and will continue playing w/ kids...he very seldom goes off by himself, he prefers to be w/ children...if he doesn't "get it" he will just copy what the kids are doing..he fights/argues w/ his older brother..he does typical "little brother" things to annoy his older brother, and younger sister and he knows he's doing it just to bug them...he transitions fine,NO routines..his speech is coming in appropriate..he does have back and forth conversations now(still somewhat behind his peers)..he asks why/what/where questions...i'm even starting to get sarcastic back talk from him ughhh..(thought that didn't happen till teenage years????) he hates the Happy Bday song at parties..but will sing at music time at school w/ the kids and we sing at home..he will sing happy bday w/ me at home(alone) but at a party?? forget it!!!

so, u can see how my son is a puzzle...do u think i should consult another specialist?what kind? some have said to me stop worrying about a label for your son..just treat his needs..which we are absolutely doing...i just seem to always come back to this point and wonder hmmmmm about a spectrum disorder???? am i being a crazy mother and i need to let it go?? any input would be appreciated :)

[mich97]

i understand what you are saying...my son is on an IEP and it a legal document..it is my understanding that they have to provide all the services he requires..speech,ot,behavioral academics etc...his document states he will be pulled out such and such mins during the day...his mainstream and spec ed teacher were concerned b/c the IEP (that we wrote at age 4 b/c they get done yearly( unless needs changes)  it states most of the day he was to go to the special ed room..they did not agree w/ this  for they feel he needs to be around "typical" kids more for the social aspect...he does very well socially,has friendships and seeks out making new friends...so by having another meeting we will not take away services just "tweek" his iep to state more time and at the discression of the teachers if he can stay in the regular class...i thought this was a POSITIVE....as i said he does need to be re-directed for being silly but does so easily..distracts easily,may talk about tornados frequently..i am told by the teacher they tell him "it's not time to talk to tornados it's time to do this work" and he is re-directed easily and does his work that is expected w/ some support...he particiapates in group activities w/ an aide to re-direct if needed..i'm told he does well even in groups....b/c of his language delays (BTW everyone i know has noticed how much he's improved and that gap between his peers is closing,not quite there yet) he will need support,1:1 for academics..i have no doubt about that...i am happy we got a early start in preschool...

so, i guess i am caught in "limbo" here..as my son does not have a diagnoses of being on the spectrum i do not think at this point alternative school (for spectrum kids) would be an option..i'm not quite sure even the characteristic he does have would be reason to go that route..at this point it does not seem to negatively impact his education..to be honest i never thought we'd need to go that route (but will keep an open mind if things seem to head that way down the road) sure he's not an "easy" kid...needs re-direction and support w/ academics but there are many kids in the mainstream that are also like that...with the right services and parents on top of things to make sure things are going smoothly and it is not a negative learning environment it can work in the public schools..
my hope is that we continue to provide him w/ all his services he needs..if he's capable, wean him in to mainstream education...as he gets older and if he needs less/more support???i think time will tell..it's still so hard at this age where so much is going on developmentally...there is still so much more room to grow and see where he will fall...

i have thought it over and at our 3rd neuro appt in Nov. i will ask to see a develop. pediatrician at our city hospital...the neuro has said "NO to the spectrum" i think i just need a better understanding what is going on w/ him w/ delays/sensory etc etc

thank you so much for your input/insight...it has been very helpful....

[Sally44]

All you can do is see how he develops.  However you need to be knowledgeable about what your son's educational rights are.  You need to be aware of the schools in your area that are State run that have more experience/expertise in autism.  You also need to know what other educational options are available.
For example, in my case.  I have had the Autism Advisory Teacher recommend that my son was placed in an autism unit because whenever she has observed him in class he was unable to engage in the classroom activity, his attentionw as always elsewhere and he spent most of his time reciting DVD dialogue to himself.  However, at home, I know that if the task is explained to him and he understands what he has to do he can be left to independently complete his work.
From Educational Psychologists report in 2006 I know that my son is at least of average intelligence although there are learning difficulties which may include Dyslexia and he has a Speech Disorder classed as severe for his understanding of receptive speech, along with sensory processing disorder and auditory processing disorder.
So where does he fit in??  Not in an Autism Unit.  Not in a school for Learning Disabilities as many of those children have lower than average IQ.  Not mainstream because the 'environment' is too distracting and confusing to him.
I have found a Private School that caters for high functioning autistic and aspergers children with speech and communication problems.  In this school he would be in small group work in an autism friendly environment.  His work would be highly differentiated, but because of his cognitive level he would be expected to work towards exams.  He would be taught life skills such as making friends, holding a conversation, going shopping, how to open a bank account etc etc.
And wherever your son is, if you need/want to move him to need to be planning about 2 years ahead as any spaces in any school that caters for autistic children or those with autistic traits get snapped up years in advance.
In the USA do you need something like an IEP to get a Special Educational Place?  In the UK you need a Statement to get certain services/support in mainstream school and you can't get a place in a Special Educational School if you don't have a Statement.
So, my answer is yes, see how he develops, but always be planning and seeing what your options are two years in advance.
It took my a whole year to manage to move my son to another school, and I only managed that as another 'mainstream' child, as all the extra support places for those on the spectrum were already filled a year ago.  If I hadn't been aware of that problem and applied for a 'normal' mainstream place, my son would still be stuck in his other school where they had no understanding of his difficulties.
So find out through the National Autistic Society, Parent Support Group or a Legal Advocate.  Don't rely on the school or state to inform you of your rights because they have budgets and it is in their interest to keep their costs down or within budget.
That is why I asked if a diagnosis would give you access to other services.  It might not make any differene now.  But what about when he is secondary age?  In the UK if you don't have a Statement you don't get access to Speech and Language Therapy at age 11+.  I know that is along way in the future.  It is almost like being in the right traffic lane.  Once you are in the right lane it is easier to continue in that lane.  If you have to switch lanes it can be very difficult and you may not be able to do so later on.  
Is it possible for you to be on the Special Educational 'lane', but for your son to still have access to mainstream classes some or all of the time?
I know it is hard to do.  But sometimes we have to emphasise the difficulties rather than the things they can do.  Because usually the things they can do, they can't do them to a level or as often as their peers anyway.  So although it is great that they can do these things you need to concentrate on the difficulties to get the support.
On a bad day my son is hyper and needs one to one support to be constantly re-directed and to pay attention.  So that is the level of support that has to be available eventhough on a good day he can cope and be independent.  If you do it the other way round they will assume he can cope and be independent and on his hyper days he will not have the support he needs and will probably get into trouble for being naughty or disruptive.

[mich97]

we want to do what is in the best interest for our son...would you agree that it is too early to tell how he will do in mainstream?? he is into kindergarten 2 and 1/2 weeks so i believe we need to see how it goes...already he is being re-evaled /monitored for 6-8 weeks b/c they feel his IEP needs to change and he needs to be in the regular class more..this iep was written last march when he was still 4...huge improvements since then...honestly i was worried sick how he would adjust in kindergarten...would he have melt downs,not listen to the teacher etc??????so far that is not the case...he listens,joins in and has not had one out burst...yes, he needs to be re-directed for being silly..he's a copy cat so if another child is being silly he joins in..the only concern his teacher brought up was he talks about tornados frequently and how he plays w/ his fingers a lot..once re-directed to task he does his work....he does well w/ teacher support..

i believe we'll have to see how the next few months go...like i said he's done/doing things we did not think he was capable of...he is being pulled to the smaller groups for academics at this point....i do not want to set him up to fail...however, i need to give him a chance to "swim" in the mainstream atmosphere....

[Sally44]

From my personal experience, I would got on your child's behaviours in school.  If he seems much worse than he is at home, then it could be, as you say, that he just isn't able to engage.  There could be a number of reasons for that.  He might need more structure.  He might need smaller classes and more one to one to make sure he understands what he should be doing, then he can complete his work independently in a structured environment.  
My son is presently mainstream.  He gets small group work with a TA (small group of him and one other child), then he goes off and does his work once she is sure he knows what he should be doing.  I have noticed alot less of his anxiety behaviour at this new school.  But I am still going to tribunal for a Private School because although this State school is the best available in our area, it still doesn't meet all his needs.  For example he needs to be taught so many life skills.  In some areas he does great.  He went to his former schools Youth Club for the first time last night and he coped with the noise.  He played table soccer and other games with the kids and adults.  He made a pizza.  Infact he is much less trouble than the other 'normal' kids.  
I think that if I had really pushed it I wouldn't have got a positive diagnosis with my son.  However, on a bad day, he has been observed by another professional who recommended he should be in an autism only unit.  He is way too capable for that.  However, you will know yourself, that their ability to cope and how they appear varies greatly day to day.  So get some advice from the NAS and follow your gut instincts regarding how your son is coping in any educational environment.  Remember that 'learning' is a lifelong experience.  I think it is more beneficial to be in an atmosphere where they understand what they should be doing and enjoy learning rather than be in a more typical educational environment and constantly struggle and get totally turned off from learning anything.  Everybody needs to feel positive about their situation and to succeed to be motivated.  Nobody would be happy or motivated in a situation where they didn't really understand what was going on, what was expected of them, how to complete their work successfully etc.

[mich97]

At this point I guess we don't know if he'd continue w/ mainstream education..I can say so far so good..he's doing well in his first few weeks in Kindergarten..Last year in preschool during a meeting there was a question if he could take the regular school bus w/ the kids or if he would need a special ed bus....i knew he could take the regular bus and insisted we try it and so he does..he's doing wonderful he sits in his seat and listens to the bus driver.....the bus driver said he is NO PROBLEM at all and has a little friend he sits w/ everyday...he comes home and tells me about his conversations w/ his bus friend....already his regular teacher says he's doing great and wants to see him in the regular(mainstream) class more for the exposure for social interaction w/ typical kids....Sure sometimes he gets silly and has a hard time paying attention,talks about tornados but there is an aide in the class room to re-direct him if needed...Just being the begin. of school year of kindergarten i think time will tell how he is going to do w/ academics..there is still so much room for improvement...just when we think he's not capable of doing something, he proves us wrong and does it....i know he needs a lot of 1:1 and info repeated to him...he's a strong willed kid and if he doesn't want to do something it takes some coaxing...i have a feeling he talks about tornados a lot at school b/c he doesn't want to do the work or is not understanding it...it's a comfortable subject for him...sure he talks about tornados at home occasionaly but it's not excessive as his teacher says...i don't think he mentioned tornados once yesterday (at home)

the finger thing i wasn't sure about..he doesn't really do it in "front" of his face..he just plays w/ them..as if he needs that sensory input...i can recall a friend that did that as a kid (or something similar) she had a lot of anxiety/ocd issues that's why i wondered??
i'm sure this finger playing will come/go and something new will pop up...

i'm not sure if the diagnoses will add more services..he already gets quite a bit..speech,OT, aide for behavior,will get pulled for extra help on academics when needed... i think i need to look into autism society in my area and ask the neuro MD for a referral to a developmental pediatrician..i'm not sure what else the neuro MD can do for us...she said NO to the spectrum..just is doing follow ups and says if he's not improving she would do a MRI.....he is improving, but still these "quirky behaviors" so i'm not sure what else she can do on her part??? she also said i could take my son to 10 specialist and maybe one or two COULD say yes to PDD-NOS, but she was sure it would be the wrong diagnoses and he would lose it down the road..She said he was way to social to be considered on the spectrum?? also, the 2 other times we had appointments for the hour we spent w/ her my son was an "Angel" he listened/did every thing she said, had conversations back and forth w/ her (defin. speech delay noticed) and did not do one of his quirky behaviors in her office (of course) if this finger playing is still around for our appt in Nov. atleast i can point that out so she knows i'm not this crazy mother..

i do believe my son is borderline regarding a diagnoses..i can see why the specialist are saying NO but I can also see why some people might think hmmmmmmm...this is really frustrating b/c i almost feel caught in the middle...thanks for your in put..i will cont. to update about my son...thanks for the support...

[Sally44]

The other comment I wanted to add, is do you know if a diagnosis will give your child access to better support or facilities within the education system.  
Do you think he can/will continue in mainstream education?  If you are unsure check if he will need any kind of formal diagnosis to get paperwork completed that gives him access to alternative education routes.
I would advise you contact the National Autistic Society in your country for them to give you more insight into these things.
Although a diagnosis = a label, your child will be given a label anyway regardless.  So it can actually be more positive from a self esteem point of view to have the label 'ASD' as opposed to 'naughty' or 'disruptive' or 'weird' etc.
Be in no doubt, that if your child is diagnosed as being ASD, and then improves as he gets older, he will have his diagnosis revoked and his supports removed within school.  It does sound like you maybe a border line case, so advice from the NAS would be useful to you.

[Sally44]

Hi,
I think I've answered to your posts before.
As a parent of a child with an ASD it sounds to me like your son does have some characteristics of an ASD, but he may not have enough of them to get a diagnosis if he continues to progress with social interaction etc.
But even if he just has traits of an ASD the supports and strategies they should/could use are going to be exactly the same as for an ASD child.
You can also ask for your son to be referred to a clinic that specialises in diagnosing ASDs.
In my case my son is on the spectrum, however he has other issues that have just as great an effect as the autism.  Again your son sounds like this.  He has sensory issues which are life long.  He is echolalic which means he has a life long speech disorder.  That doesn't mean he won't develop.  But it also means that he will always be finding these things harder than his peers.
He may have auditory processing difficulties.
As he develops you will see, as you have done, that 'new' things will emerge and others will disappear.  The finger playing infront of the face is usually with ASDs and Visual Sensory difficulties.  It is not OCD, it is rigid repetitive movements and is part of the clinical diagnostic criteria.  You say he also has ADHD.  Parts of ADHD and ASD overlap eachother anyway.
You also mention he has obsessions.  But as he has a speech disorder that usually means an ASD as opposed to Aspergers.
So, I think you can either ask for another expert opinion of someone experienced in diagnosing ASDs.  Some private special schools can do assessments.
You can also ask that if they say that he has traits of ASD that that is recorded, so that any future professional will immediately have an idea of the kind of difficulties he might have.
My son is also a bit of a puzzle.  The thing is that very few children are going to fit the criteria perfectly.  My son is going through alot of assessments at the moment.  We went away for a three day assessment at a private school and when he went back to his normal school they commented that he wasn't at all upset by all this change.  But I know that he wouldn't be upset by this stuff, infact he likes the difference.  But once you have told him the days routine, if you change it you could get a tantrum.  Or getting him to leave the house or turn the TV off.  So each child is different.