** JenGK **

nictel

Hi -

I've been following some of your posts, since your DS has the same (albeit contreversial diagnosis) of oral / motor dyspraxia that my DS has.  I hope you don't mind me reaching out.  I'm so lost.

What made you decide to get him evaluated?  Who did the evaluation?  What kind of services has he received?  Have they helped?  I read your post about a neighborhood kid asking your husband about your son's 'quirky' as you put it, behavior, and it really hit home.  What have you been telling people?  I am honest to a fault with close friends, but am lost around strangers.   Out of curiousity, what behaviors does he have that makes him quirky?  My son is quirky too, and I was wondering if they were similar.  I still feel like there is a possibility of an ASD or PDD diagnosis down the line, even though my supposedly 'reknowned' neuropsychologist ruled it out.  Have you been at all concerned about the accuracy of your DS's diagnosis?  Do you feel ASD has been ruled out for you and Dyspraxia best explains his behaviors of lack of specific skills?

Thank you so much for taking the time to help

PS. If you'd feel more comfortable PMing me, that's fine, and / or I'll send you my email address.  Whatever is best for you.

JenGK

I totally relate to feeling lost about all of this.  I really still am in some ways.  My message below is long -- but my bottom line is that ST and OT have helped, but finding the right therapists is key.  SN public preschool has also been great for us.

I started having concerns about Zach pretty early on -- worried about his eye contact, his stranger/newness anxiety, and his complete lack of speech.  When he turned 1, he would say "up!" and that was about it.  His pedi kept deferring my concerns.  When he was just short of 2 years, I insisted on an EI referral.  At that time, he was in daycare full-time and in preparation for the EI evaluation, I spoke with the director and asked her to work with his teachers to compile a list of any issues that I should raise.  They ended up giving me this list of things that included his unwillingness to engage in circle time, crying when attention was directed at him during circle time, problems with transitions, etc.  (I won't get into how ticked I was at them for never discussing any of this with me before this time).  After getting this list, I spoke with my sister-in-law, whose son also has SNs, and she pointed me toward SPD.  Everything I read about SPD made sense.

Then we had the EI evaluation, for which the county sent a physical therapist and an "infant educator".  Zach was very unwilling to participate in the evaluation -- they were new people, which was one of his triggers.  What they were able to observe led them to recommend speech (of course) and OT for his sensory issues and some minor gross motor delays.  During the evaluation, they also noticed some fine motors delays, but no PT was offered.  They also commented on how he held his mouth in a funny way, but said they couldn't do anything more with that at this time b/c no SLP was there for the eval (grr...).  They drafted goals, and I signed off on them (knowing what I know now, I shouldn't have signed).

I was unhappy with the EI evaluation.  One of my friends at work pointed me to another colleague at work who son has SNs (dyspraxia, it turns out).  This colleague gave us the name of her SLP, and I immediately called her to set up a private eval.  She saw Zach when he was just short of 2, and pretty much immediately diagnosed him as dyspraxic.  She also noted his sensory issues, both overall and in his mouth.  We started ST with her, and have been going ever since.  She does PROMPT therapy with him, and it has been effective (though progress is admittedly slow).

We did receive OT and ST thru EI, but I was unhappy with those services.  Our EI SLP was young and new nothing about dyspraxia.  Her techniques were not effective, and she frankly just didn't "get" Zach.  Our OT was perfectly nice, but Zach would not engage with her.  Most of our sessions were her talking with us.  As a result, we decided to shift from EI to the school system.  After a fight, we got him enrolled in school with a 2-year old program, and he thrived there.  We kept up with our private speech and also started him with private OT (we got our OT's name from the same colleague who reffered us to our SLP).  This summer, instead of ESY we enrolled him in an intensive Floortime therapy program that was awesome.  Even his private OT noticed a huge difference in his behavioral regulation and willingness to engage with her.  The Floortime folks gave me great suggestions on working with him.  Because he is "underresponsive," Zach is much more likely to respond to me if I am animated (sing-songy voice, exagerated facial expressions and movement) and touch him.  Yelling at him across the room results in pretty much no response.

I was (and still am) concerned about a possible ASD diagnosis.  We actually took him to see Dr. Greenspan before he passed away, and he is about as reknowned on ASD as you get.  He diagnosed motor issues, and said in no uncertain terms that he was not autistic.  The psychiatrist at his summer Floortime program also believes that he is not autistic, but instead has significant motor planning/visual processing issues.  Even with both of these opinions, his sterotypical behavioral quirks keep the question in my mind (even though the experts say that the quirks are consistent with their explanations and that other behaviors strongly indicate that he is not autistic).

Some issues that concern us and that manifest with others -- spinning when he is overwhelmed; anxiety re new situations; unwillingness to engage with (ignoring) other kids (this is getting better); fixation to some degree on certain items (fire trucks and trains, largely); his need for visual stimulation (getting down to stare at the wheels of the train when pushing them by); lying on the floor to play with toys; running away from us.  I think Zach's ignoring the neighborhood kid, running away, and some unusual verbal utterances/babbling led to his comment about being weird.

I'm very open (also almost to a fault) about Zach's delays with our friends and neighbors.  I explain the speech delay to people who might see him again as a neurological glitch the prevents him from being able to form sounds.  To strangers looking for an explanation as to why he doesn't respond to their "what is your name" question, I say something like "This is Zachary.  He has a hard time talking to new people, but we're working on it.  Zachary, can you say hi?"  And he'll usually respond with a verbal "hi."  I also sign a lot with him, and doing this in public I think signals to other people that he's not typical.  We've been lucky thus far not to have major behavior break-downs in public.  When he does, I tend to deal with thing very matter-of-factly, often using signs again.

Happy to talk more, if you'd like.  You can reply, or email me at jengknight at gmail.

nictel

Jen,

Thank you so much for giving me so much information.  I've been trying to respond for a little while, but I've been too teary to do it.  I literally could not stop crying after I read your response.  It is EXACTLY what I have been going through with my DS.  Really.  Almost word for word.  He has been a little different since he was about 6 months old.  We originally chalked it up to prematurity, but as he got older, the delays got larger, and being 6 and a half weeks premature didn't really explain it.  At 18 months we would go the Little Gym and Tot Music class, and unlike all the other kids in the room, Brian would sit in my lap and suck his thumb and observe.  No interest in engaging with other kids at all.  He wasn't walking yet, so I had him evaluated for EI.  (He had been evaluated at 12 months when he wasn't crawling, but he didn't qualify). 

 At 18 months we were told he was globally delayed and he started receiving Special Education 3 times a week and Physical Therapy once a week.  Within 6 months he went from not pointing, not waving, not being able to identify a single object in a book to socially waving, being able to point to hundreds of different objects in books, being able to follow two-step directions, etc.  It was like he was a whole new kid.  (He also started walking within a week of his IFSP.)  They had advised us to wait to start Speech Therapy until he was 2 since there was a lot of overlap from Special Education.  At 2 he was reevaluated and scored too high to receive PT or Special Education anymore.  His receptive language, while not perfect, was so greatly improved we were relieved.  However, in the back of our minds there was this nagging feeling that kept getting more intense that Brian still wasn't like other kids, and there was something wrong.  Everyone who had evaluated him and had given him services assured us that he was not on the ASD spectrum.  This included 3 special ed teachers, 2 SLPs, 2 agency service coordinators and our pediatrician.

When he turned 2 end of June, speech services started.  Within 2 visits our SLP said that she thought he was either on the spectrum or was dyspraxic.  (I thinking she was leaning towards ASD, but....)  We took him to a well-known neuropsychologist in NYC who also definitively ruled out autism and diagnosed him with dyspraxia.  Like your son, a lot of it was based on the way he walked, ran, moved etc, and a million issues with his mouth such as the way he chewed, couldn't stick out his tongue, couldn't blow a cotton ball, had low muscle tone, tactile defensiveness around his mouth, and an enormous lack of different sounds.  While being tested by the neuropsych Brian displayed some 'quirky' behavior which he attributed to dyspraxia and his young age.  Just like your son, there were so many other behaviors that my son displayed that they experts told us were not consistent with an ASD diagnosis.  Brian is very social with us, is always engaging us to join his activities, has receptive language way way ahead of his expressive language, is extremely flexible and easygoing, doesn't tantrum at change of routine, easily self-soothes, etc etc.  I know that there are ASD mommies on here who will say that these things don't rule out an ASD diagnosis. I understand where they are coming from. I can only go with what the neuropsych said, and that was that he was way too socially engaged with us for an ASD diangosis.  We were told that there are so many criteria that need to be met for an ASD diagnosis, and if you don't meet them, there is no diagnosis.  If Brian got an ASD diagnosis, it would be ok.  There are amazing kids out there with ASD; I just want to get him the right diagnosis so he is getting the right help.

Like you, I sometimes have my doubts.  And like you, I have been told that the vast majority of Brian's quirky behavior can be explained by dyspraxia, or the fact that he is an immature 2.  Brian's quirky behavior is almost exactly the same as your sons.  Really.  His special ed teacher mentioned possible sensory issues.  He also is unwilling to engage in circle time at 'school.'  He is unwilling to engage other kids, but with a nudge, this is getting better.  (Again, Brian just turned 2 so I realize that that might have to do with his age, although I think he is worse at it than other two year olds.)  Brian doesn't really spin (I've seen him do it a few times for 10 seconds or so, but that's it.)  He does hand / arm flap when he is excited, which seems sort of appropriate, but sometimes I question why he is actually so excited about whatever it is.  Should seeing an airplane, the moon, overhead lights, ceiling fans, etc really be worth pointing out to me all the time and then worth arm flapping / marching in place over??  What sets him apart though is that he doesn't stare at these items.  Instead, he is thrilled at finding them (sort of like a real-life Where's Waldo) and pointing them out to me.  It seems very immature for a two year old, yet he always engages me to show me the exciting thing he's found.  Brian is fixated with basketball - could play it forever and also with the aforementioned things in the sky - planets, stars, the moon, the sun, airplanes, clouds, ceiling fans, light fixtures.  Maybe a better way to put would be things above him that are not immediately noticed.  It is now starting to spread to police cars, fire trucks, ambulances, emergency vehicles.   The thing is though, he engages you when he does it.  I don't know enough about stimming to know if engaging someone in a sort-of repitive behavior disqualifies it from being a stim.  With the stars, etc, he always wants to show them to you, and when you notice he gets excited and points and makes a sound like he's trying to say a word and has a huge smile on his face.  However, he does it A LOT.  With basketball, he always wants you to take a turn so you are playing with him, but he could play basketball forever.  The thing with Brian is though, if you say something like "let's go outside, or let's take a bath, or let's watch elmo, or let's color, or whatever" he'll immediately move on to the suggested task.  If no other task was suggested, it would take him longer to gravitate to a new task.

Part of me thinks that the dyspraxia makes complex tasks hard for him, so he engages in tasks like basketball and some more immature container play because he can comfortably do it.  He's not a kid who is motivated for a challenge.  His pretend play isn't great either, although it's definitely emerging, just much slower than you would expect in a typical 2 year old.  I also think that his inability to speak at all to other kids makes social interaction with them somewhat pointless in his mind.  This of course leads to receptive defecits because oral communication is totally a one way street.  He has a curiousity about other kids, but is not engaging with them.  I also wonder if some of the flapping is from motor planning problems.  I do want to add that Brian will point, bring you over to what he wants, or goes and gets what he wants and gives it to you. So he does communicate in his own way.

Of course the other part of me thinks he has an severe speech problem, he doesn't really socially engage with other kids, he marches in place and flaps him arm when he's excited, he's fixated on things in the sky, etc, he must be autistic.

I am sorry this got so long.  Thank you for being an outlet for me.  It's just so important to me to know that there is another kid out there who has severe speech delays, isn't great at socially engaging with other kids, has some fixations and sterotypical behavior, and also got a dyspraxia diagnosis instead of an ASD diagnosis.  Your son just sounds SO MUCH like my son...just a 1 year older version.  (And like you I open about my son's situation almost to a fault.  I want to engage him with typically developing kids as much as possible, since I think it is good for him, even though it it tough for me to watch other kids his age exhibit skills / behaviors miles ahead of him.  I have friends from when he was born whose kids are the same age and of course appear completely typical if not gifted.  I love these moms and want to stay close with them, but I have had to develop a pretty tough skin.)

On a sidenote, I also think that floortime would be great for my son, but I had been lead to believe that it was a therapy you would get with an ASD diagnosis.  How were you able to secure floortime with 'only' a dyspraxia diagnosis?

I also would really really like to pick your brain about SN preschools, but this gotten to be a novel, and it has gotten really late.  I'll send you an email tomorrow.

From the bottom of my heart, thank you.  You have helped turn things around for me...

JenGK

Sorry it took me so long to reply.  I was traveling, had my laptop and by BB break, and now have a little one with his 5th ear infection in 5 months.  Screen time has been limited.

So much to say, and so many similarities.  I gave up on Gymboree after DS would spend all this time trying to open the cabinets.

Here's my feeling on controversial diagnoses/questioning docs:  I love this board, and I have gotten so much out of it.  And I know that some people may disagree with what our providers have told us about DS.  But whenever you post re a medical diagnosis/question on another board, they say "ask your doctor, not the internet."  I have an opinion from a psychologist who worked with him 3 times a week, 2.5 hours at a time, for two months.  In my mind, that counts for much more than opinion others have developed based on what I have posted on a message board.  That said, like you, I am not closing myself off to an ASD diagnosis at a later point in time when he can do an IQ test, etc.  Auntie's dev pedi has a book and a blog that talks about the spectrum of autism and "borderland" conditions.  Right now, I believe that my son falls in the borderland.  He has a brain glitch that manifests as autism in some way, but not in others.  I started off by reading his blog and then moved onto his book -- interesting, usefull stuff.  https://www.psychologytoday.com/blog/making-sense-autistic-spectrum-disorders

You'd probably also be interested to know that I got my therapist referrals from a colleague of mine whose son is dyspraxic, and who was told by a number of people that he was autistic, that he would be profoundly delayed, that they should consider institutionalizing him, etc.  Well, he is mainstreamed in school now, still with motor planning issues and articulation issues.  But he plays baseballs, has friends, and reaches out to my son to play peek-a-boo in the waiting room.  I am so happy to have them in my life.

His Floortime OT attributes a lot of his issues to motor planning and visual processing difficulties.  Zach gets overwhelmed by visual stimulation around him, and will fixate on certain things that make him feel comfortable (and he gets excited by pointing out buses to me while on the street, too).  But if you take way the external stimuli by, for instance, putting him in a tunnel where he can't see anything but you at the other end, he is very interactive.  And he engages with us otherwise -- reaching out to us to engaged in sensory activities (he is a big time sensory seeker), come to us for comfort when he is hurt, brings us things that he wants, occassionally points, etc.  He is such a mish-mash that his prior therapists have admitted to me that he is confusing to them.  What has really made a difference for us is fining this one OT who really "got" him and drilled down to figure out the way that he works.

 This OT also explained to us that she thinks Zach's lack of engagement may be attributable in part to him being overwhelmed and taking longer to process things.  So, when he finally gets what the kids are doing and can sequence the socially appropriate response, and then engage in the appropriate motor activities, the kids have already moved onto something else.  His response then appears totally out of place.

I still don't know for sure what is a stim and what is not.  But I do know that hand-flapping at a young age is still developmentally appropriate -- so don't worry too much about that yet.

I found the Floortime program when I was looking for a summer camp for him.  I was orginally interested in the OT and speech camps this place had, but when they met Zach, the therapists said the Floortime program would be a better fit.  While Floortime is broadly recommended for ASDs, it actually has a broader application to kids who generally have social and communication issues.  There was a little girl in the program who has DS, and others who had dyspraxia.

Feel free to email anytime!

nictel

I thought I'd respond here, and then going forward email you with any additional questions.  I really appreciate you taking the time out to help me!

How much is Zach speaking now?  My neuropscyh thinks Brian might start saying some words by 3, but right now that seems hard to believe.  (He is 26 months right now.)  He really only has a few sounds, and they seem to come and go.  One month it will be lots of mom, mom, mom, and the next it's neigh neigh.  He really does seem to be struggling to get the sounds out. 

What kinds of things is your SLP doing with him?  I've heard that prompt is supposed to be great for kids with dyspraxia.  My SLP uses it sometimes, but not always.  Sometimes it seems to be incorporating sounds and gross motor movements into play.  I realize he has to start somewhere, but I feel like I already lost a lot of time by waiting until he was 2 to start speech, (My EI team told me at 18 months since he was receiving special education 3 times a week, I should wait until 2 to start speech.  That speech would just be an overlap.  I now regret agreeing to that, but I trusted my team.)  She also does a lot with feeding.  She has him eat in front of a mirror, leave food on his face to see if he feels it, and has his food cut up in certain ways to improve the way he bites and chews.

I think I remember you saying that he is in preschool now.  Is he in a SN preschool?  If so, is he in an integrated classroom or in a self-contained classroom?  I toured a SN preschool today to look at their EI program and their 3 year old preschool.  I had the feeling that if Brian wasn't speaking at 3, that they would not want him integrated.  Not sure how I feel about that.  He really has very minimal sensory issues, follows directions well (at least at home - not sure about preschool setting) and has no behavioral issues.  He rarely has a tantrum (I can't remember the last time), is very very easy to redirect, and is very good at self-soothing.  I realize that by 3 this could all change, but right his primary issue is his complete lack of speech.  Is Zach with other kids with speech problems or with other kids with ASD, etc?   My neuropsych mentioned that in his opinion, some therapies like ABA don't help to initiate productive speech, and in fact might be detrimental.  Don't know if that's true, but it does have me thinking. 

Do you use PECS or any signs?  I am trying to imagine the next year or two, and right now I just can't imagine doing things like potty training etc with a child who can't speak.  It's already hard enough to figure out things like what he might want to eat, etc.  He will go and bring me snacks, but meals are a whole other story. 

Any advice on how to handle the stress as a mom?  Right now I am a stay at home mom, and don't have the escape in work that my husband has.  I got laid-off a year ago from a corporate client services role as the economy went down the toilet.  I feel like every minute he's awake I should be engaging him in some language based activity, but that feels forced and exhausting and my house becomes a pit.  I just feel terrified for the future.  I can't stop thinking; what if he never speaks?  What if he can't follow directions in a school setting?  I involve him everyday in activities with typical kids, but sometimes it's hard on me to watch them.  Even today I cried in the car on the way home from the tour.  You just don't think when your pregnant, "Wow, I hope in 2 years I'm touring a SN preschool and talking about self-contained classrooms."  I realize I am truly blessed, and it could be so much worse, but somedays it just feels pretty bad.  We also would like to have another one, but are afraid that they will either have dyspraxia or something worse, or that it will take too much time away from Brian.  I wish I could see into the future and know it will be alright.