Evaluations for dd8?? (X-posted)

[jkl]

My daughter turned 8 in October.  She has always been quirky.  When she was a baby, we joked that she just barely tolerated us because she seemed very detached. She was late in gaining speech, but now her language is normal--she is a chatterbox.  For several years, she has shown an age inappropriate need to chew:  First all of her toy(legs and ears and wheels chewed completely off!)  and now that she is older, her body (she bites her toes and there are raw areas where the skin has come off, and she gnaws on the sides of her mouth till there are swollen areas, etc.)  She has been tested for pica and all vitamin deficiencies.  She goes around smelling everything and seems to seek out smells that most people would find unpleasant (a dirty diaper, for example).  She is a hand flapper and spends lots of her free time walking around flapping her hands and whispering or singing to herself.  She can't quite explain why she's doing this, and only says that it "helps me think better".  She used to have lots of problems with anxiety (extreme fear of dogs, etc) but that has gotten much better this year.  Lately she is saying that she can't stop thinking "3 things at one time" or that her thoughts are going "too fast".  The other day, she asked dh if there was some kind of surgery a person could get so to make a thought go away.  She is extremely shy, and has a hard time expressing herself when I ask about any of these behaviors.  She seems happy most of the time.  She still holds her pencil in a fisted grip and often switches hands because her wrist gets tired.  She is working about a year behind grade level in everything but reading--she is now reading on grade level.   She has a hard time following directions and seems distracted a lot of the time.  I often have to repeat my requests to her multiple times before she seems to "get it".

  Last winter, she had an OT eval.  It was determined that she needed services. She was seen for 6 sessions (half of these were rescheduled or canceled at the last moment).  After the last session, the OT told me she was putting us on a consultative basis, told me to use a pencil grip to address her handwriting issue and showed me some things on her laptop I could order from Amazon to address her sensory needs.  She said she'd check in with us periodically but we never heard from her again.  I have been working on hand strengthening activities with her and have made her a sensory box.  I used to work in special education, but my students were all severely language delayed, so I'm a little out of my comfort zone with this.  I need more direction!  

   I'm certain she has some fine motor delays and probably some type of sensory processing issues (she is a sensory seeker for sure).  We have an appointment with a different Occupational Therapist after the first of the year.  Is there anything else I should be looking into?  I'm wondering what I should expect from an OT?  Surely more than we got the last time!  Anyone have any advice?  Thanks!!

Edited December 31, 2016 by jkl

[MistyMountain]

Switching hands and using a fist grip at 8 is definitely something that needs to be addressed. That is very delayed. With the fine motor issues and sensory issues if you have the means to see an OT I would. I definitely would expect more from an OT. She sounds incompetent. Canceling appointments and putting you on a consultant basis for the issues you described is not cool. I would find another OT. If you have a COVD eye doctor in your area I would consider getting an appointment to see if there is something they can address.

[jkl]

Thanks!  She sees a pediatric ophthalmologist yearly.  (She has worn glasses to address her strabismus since she was 2).

[OneStepAtATime]

Ophthalmologists frequently are not trained to assess accurately for developmental vision issues that a developmental optometrist would.  I agree you might see if you have a COVD eye doctor in your area (and expect some negativity from the ophthalmologist, there seems to be some professional jealousy between the two areas).

 

http://www.covd.org/

[kbutton]

Are you seeking (or open to seeking) broader evaluations than just OT? I bolded some non-OT things that I would want to know more about if I were getting evaluations.

 

My daughter turned 8 in October.  She has always been quirky.  When she was a baby, we joked that she just barely tolerated us because she seemed very detached. She was late in gaining speech, but now her language is normal--she is a chatterbox.  For several years, she has shown an age inappropriate need to chew:  First all of her toy(legs and ears and wheels chewed completely off!)  and now that she is older, her body (she bites her toes and there are raw areas where the skin has come off, the sides of her mouth till there are swollen areas, etc.)  She has been tested for pica and all vitamin deficiencies.  She goes around smelling everything and seems to seek out smells that most people would find unpleasant (a dirty diaper, for example).  She is a hand flapper and spends lots of her free time walking around flapping her hands and whispering or singing to herself.  She can't quite explain why she's doing this, and only says that it "helps me think better".  She used to have lots of problems with anxiety (extreme fear of dogs, etc) but that has gotten much better this year.  Lately she is saying that she can't stop thinking "3 things at one time" or that her thoughts are going "too fast".  The other day, she asked dh if there was some kind of surgery a person could get so to make a thought go away.  She is extremely shy, and has a hard time expressing herself when I ask about any of these behaviors.  She seems happy most of the time.  She still holds her pencil in a fisted grip and often switches hands because her wrist gets tired.  She is working about a year behind grade level in everything but reading--she is now reading on grade level.  Yay!  She has a hard time following directions and seems distracted a lot of the time.  I often have to repeat my requests to her multiple times before she seems to "get it".

 

 

As for strabismus, my son had mild strabismus, and vision therapy with a COVD optometry practice was very, very helpful. It also made OT stick so much better. 

[Schadenfreude]

One of my children had the same exact issues. Our OT introduced body brushing 3xdaily to start, weight bearing exercises 2xdaily, swinging, spinning, and jumping as much as child needs (for us that was about 6 hours a day to start). The child just verbalized their need and we let them go until they were done. We did OT for five years and now there are next to no sensory issues. The child no longer seeks sensory input at all. The handwriting was worked on after the sensory issues were more under control (about 3 years in). We worked on typing in that time.We also completed the listening program. The child still struggles to print but cursive is beautiful. The mouth issues are still there but not as prominent. There is chewy jewelry for older children, that is what we utilized until gum and mints were more age appropriate. This child is now ahead in academics. They were able to eventually verbalized that the act of trying to be still enough to read or write took so much concentration that there was nothing left to use for true understanding. We switched to audiobooks and typing on a wiggle chair cushion or verbal q&a. After things started getting better we switched back to regular books and writing.

[Schadenfreude]

All the things that kbutton highlighted makes people think that the child may be ADHD. My OT explained that an extreme sensory seeker is like this too. The body is doing everything it can to meet its needs. The child is physically uncomfortable if they don't receive enough sensory input. My OT works with kids for a bit before she suggests an adhd or any other evaluation. She steered us toward a neuro psych. The right providers make a world of difference.

[Faithful_Steward]

What does your pediatrician think about her overall development? You definitely have a few red flags for asd+.What are they doing about her pica? Have they suggested therapy?

[jkl]

Ophthalmologists frequently are not trained to assess accurately for developmental vision issues that a developmental optometrist would.  I agree you might see if you have a COVD eye doctor in your area (and expect some negativity from the ophthalmologist, there seems to be some professional jealousy between the two areas).

 

http://www.covd.org/

Thanks for this.  I will check this out. 

 

Are you seeking (or open to seeking) broader evaluations than just OT? I bolded some non-OT things that I would want to know more about if I were getting evaluations.

 

 

As for strabismus, my son had mild strabismus, and vision therapy with a COVD optometry practice was very, very helpful. It also made OT stick so much better. 

I'm open to doing whatever she needs :)  What exactly is vision therapy?

 

All the things that kbutton highlighted makes people think that the child may be ADHD. My OT explained that an extreme sensory seeker is like this too. The body is doing everything it can to meet its needs. The child is physically uncomfortable if they don't receive enough sensory input. My OT works with kids for a bit before she suggests an adhd or any other evaluation. She steered us toward a neuro psych. The right providers make a world of difference.

Wow!  That's really interesting.  So glad you had good people working with you!

 

What does your pediatrician think about her overall development? You definitely have a few red flags for asd+.What are they doing about her pica? Have they suggested therapy?

Our pediatrician referred us to the bad OT and told me to "call around" to see if any one of the places she recommended would deal with some of the other behaviors. To be fair, I dd not tell her about the attention issues or her jumbled thoughts at our last visit.  After her vitamin levels were tested for the chewing of objects, our ped said it must be sensory.  Nothing additional was suggested.

 

We do have the option of getting OT services at one location only or having a complete assessment at another center that would include (I assume) screening for ASD, OCD (which runs in the family), etc  I just wasn't sure she needed the complete eval.  When I list all of her odd behaviors like I did in my iniiital post, it seems obvious, but day to day she seems like a happy little girl who marches to the beat of her own drum...

[Storygirl]

I would go for the more complete evaluation. It also sounds like more than just an OT issue to me. The hyper focusing on certain thoughts could be related to autism, OCD, or anxiety. The things you mention could signal any of those or a combination, in addition to the sensory issues.

 

She can be "a happy little girl who marches to the beat of her own drum" and also have any or all of these diagnoses. Often complicated kids get more than one diagnosis. If I listed out all of DS12's diagnoses, it would be a long list, and we have an appointment to evaluate with some new things that have cropped up, which is likely to result in an additional diagnosis. Yet he can often come across as a neurotypical kid.

 

It's worth pursuing some answers, in my opinion. Especially because she has asked for some help.

Edited December 31, 2016 by Storygirl

[Storygirl]

Also, DS12 had some help from early intervention, but aside from that, we didn't seek evaluations for him until age 9. I think that is true for some others on the LC board as well. It seems to be a common age for pursuing evaluations, maybe because the children haven't outgrown things that we thought they would.

[PeterPan]

Just to connect some dots for you, Kbutton's optometrist that did her ds' vision therapy did *significant* work on retained primitive reflexes. Your dd probably has retained primitive reflexes, and that would mean jumping directly to VT without working on them would be jumping to the higher level skill without repairing the foundation.

 

Yes, ASD, SPD, OCD, and the obvious ADHD. Probably gifted. Yes an autism clinic. You want complete evals for psych and OT. Personally, I've been through, um, an outrageous number of OTs with my two dc, and I'm now blissfully excited about the PT we're using. It's more important that they be really good at sensory than whether they're PT or OT. It is curious though that a bunch of us have found success with PTs. I think maybe their mindset or training is different None of this is taught, so it's more what they specialized in. 

 

 

One of my children had the same exact issues. Our OT introduced body brushing 3xdaily to start, weight bearing exercises 2xdaily, swinging, spinning, and jumping as much as child needs (for us that was about 6 hours a day to start). The child just verbalized their need and we let them go until they were done. We did OT for five years and now there are next to no sensory issues. The child no longer seeks sensory input at all. The handwriting was worked on after the sensory issues were more under control (about 3 years in). We worked on typing in that time.We also completed the listening program. The child still struggles to print but cursive is beautiful. The mouth issues are still there but not as prominent. There is chewy jewelry for older children, that is what we utilized until gum and mints were more age appropriate. This child is now ahead in academics. They were able to eventually verbalized that the act of trying to be still enough to read or write took so much concentration that there was nothing left to use for true understanding. We switched to audiobooks and typing on a wiggle chair cushion or verbal q&a. After things started getting better we switched back to regular books and writing.

 

This sounds like an exceptional outcome. I've never heard anyone say we could get to not seeking sensory input at all. That's fascinating. What do you think was pivotal in that?

Edited December 31, 2016 by OhElizabeth

[PeterPan]

There's something odd about a ped blowing off your list of behaviors. The attention is run of the mill. You have repetitive, self-stimming behaviors (flapping), social withdrawal, anxiety, language delays. You're assuming no current language issues because she talks a lot, but that isn't based on data. My ds has a 99th percentile vocabulary and had really quirky language gaps because of his ASD. You didn't realize it until you did language testing like the CELF and CASL and start logging his speech to see the echolalia and how formulaic his speech was. Literally, if you asked questions, you got the exact same format of sentence every single time!  Now if he went into soliloquiy, that was different. But for conversation, totally formulaic and simplistic. And a lot of what we *thought* was unique speech was actually repeated from audiobooks and show. Good language testing can help you sort that out.

 

So yes neuropsych or autism clinic.You're going to want more testing, not less. You could even go ahead and do an SLP eval now, making sure it's someone who sees a lot of autism and who has some tools.

Edited December 31, 2016 by OhElizabeth

[jkl]

Thanks so much everyone!.  I think we'll  go ahead and get a more complete evaluation done.

[OneStepAtATime]

A lot of us havw been where you are. Very few have posted regrets for being proactive in seeking answers, even if sometimes we ended up with duds for evaluators/therapists (there is more than one fish in the sea so don't be afraid to seek out second options). Best wishes and good luck. You are definitely not alone.

[jkl]

Thank you so much!  You are all so supportive! :)

[Schadenfreude]

This sounds like an exceptional outcome. I've never heard anyone say we could get to not seeking sensory input at all. That's fascinating. What do you think was pivotal in that?

I think it was the amount of sensory input we bombarded her system with at one time. We would play fast music while she would spin (sit and spin or circular swing) and turn on a multicolor disco ball all at once, every time she needed it. At the beginning it took her many hours a day of this and was one of the hardest things I have ever had to live through. As time went on she asked for it less and less and as puberty approached it got even better. Now if she spins she gets nauseous, anything too loud she complaines about, and she'll not look at things that seem too busy. She is still fun, creative, and quirky but this has been huge. It really was an amazing blessing.

[kbutton]

What exactly is vision therapy?

 

I am glad to hear that you are open to pursuing more extensive evaluations--it sounds like they would be helpful. And yes, my older son didn't outgrow things that we thought he would, and that was one reason for getting evaluations.

 

Vision therapy is therapy to get your eyes and your brain to work together. The idea (and studies back up some of the thinking and some kinds of vision therapy) is that a lot of the control issues with eyes are really brain-based and not physical. A vision therapist will do something a lot like OT or PT for the eyes (and ideally the whole body). It should be tailored to the child just as any other therapy is.

 

As OhElizabeth stated, our VT did a lot of work on retained reflexes (particularly with my 2nd son). They do not really claim to deal with reflexes, it's more that they consider reflexes part of the key to gaining ground, and for vision, they focus on the Moro reflex in particular. They have noticed that kids who have really big issues with Moro and work on it often obtain gains in vision therapy and in all around issues with reflexes, but the place we went would not claim to be the be-all, end-all solution to retrained reflexes. I do think that the work they do makes their therapy particularly effective. 

[Crimson Wife]

 My ds has a 99th percentile vocabulary and had really quirky language gaps because of his ASD. You didn't realize it until you did language testing like the CELF and CASL and start logging his speech to see the echolalia and how formulaic his speech was.

 

Yes, it's common for vocabulary to be an area of relative strength for kids with ASD (it's the only area where my DD scores within the "normal" range) with odd language gaps. If you do get language testing, make sure the speech & language pathologist runs tests of higher-level language skills like the CELF-Metalinguistics or the Social Language Development Test. The child may have perfectly fine grammar but struggle with figurative language or making inferences or whatever.