Has anyone experienced anything similar?

[gumi]

My 5 year old DD has Apraxia of Speech and recently integrated to a regular pre-K class (after 3.5 years at a developmental preschool).  Her speech is actually very good, but it is not as intelligible as her twin ("typical") brother and still requires a lot of work.

With that said, everything is very good at the PreK. She wants to go every day, the teachers say things are great, etc.  But, she is having severe sensory issues. This is not new, and from what I understand, sensory issues are typical with kids w/ Apraxia. However,  they are the worst I have ever seen them.

I know she holds in all her stress/insecurity at school and unleashes at after school.  Lately, none of her clothing is comfortable.  It's not about the clothing though, she decides that things (everything) is uncomfortable without even trying it on.  And, her hair has been uncomfortable.  I tried and tried to explain to her that she cannot feel her hair, and this was about her needing to love herself, but she insisted on cutting it off.  She started to wake up in the middle of the night, pulling her hair, because it was uncomfortable.  It breaks my heart.

Anyway, I took her to cut it - she explained to the hair dresser what she wanted - and got a very cute, but very short cut.  And, of course, it feels the same way.  So now she wants her hair back AND her remaining hair is still uncomfortable.  And, getting her dressed is near impossible.  I had a non-dramatic morning this morning but we had to pack her clothing in her backpack and get dressed in the PreK parking lot.

I see that she is really trying.  She has 2 speech therapists but I think she needs a behavior therapist or psychologist, neither are on the Division of Developmental Disabilities coverage.  

Has anyone found good ways at dealing with real extreme sensory issues, and low self esteem due to their delays?  How can I make her comfortable in her own skin?

And now I am off to go cut my hair super short as well because it will make her feel better (she is going to hold my hand, lol).  I dont want short hair!

[craftyone]

Does your DD have an IEP at the school? While my middle son is ASD and has a ton of sensory issues, my oldest has anxiety at school. We no longer qualify for an IEP, he does meet with the school counselor weekly (or bi-weekly) to go over his anxiety at school.

As for the sensory issues, have you looked into an OT that deal with sensory intergration? My ASD kid will be starting next week OT focusing on his sensory issues.

[auntie]

Sept 18, 2014 16:40:02 GMT -5 gumi said:

My 5 year old DD has Apraxia of Speech and recently integrated to a regular pre-K class (after 3.5 years at a developmental preschool).  Her speech is actually very good, but it is not as intelligible as her twin ("typical") brother and still requires a lot of work.


Sounds like she's made a lot of progress. 

With that said, everything is very good at the PreK. She wants to go every day, the teachers say things are great, etc.  But, she is having severe sensory issues. This is not new, and from what I understand, sensory issues are typical with kids w/ Apraxia. However,  they are the worst I have ever seen them.


Sensory issues can be comorbid with a lot of mental, developmental and behavioral conditions. Were any of these looked at and R/O when she was initially dx'd with Apraxia. Does she have a SPD dx? Was she dxd by a SLP or by a developmental pediatric team that included an SLP, OT and neuropsychologist to R/O other conditions commonly comorbid with Apraxia?

I know she holds in all her stress/insecurity at school and unleashes at after school.


Would you say she is an anxious child?

Lately, none of her clothing is comfortable.  It's not about the clothing though, she decides that things (everything) is uncomfortable without even trying it on.  And, her hair has been uncomfortable.  I tried and tried to explain to her that she cannot feel her hair, and this was about her needing to love herself, but she insisted on cutting it off.  She started to wake up in the middle of the night, pulling her hair, because it was uncomfortable.  It breaks my heart.

I'm sorry. This must be hard to watch. Is she tugging on hair or does it raise to the level of trichotillomania? I have two nieces who have had episodes of trich. One has it with low level anxiety and it waxes and wanes; she's recently started Prozac and the behavior has ramped down a bit already. (she lives with me, so I see her day to day) The other has it with mental illness and she pretty much always has a bald patch unless she's abusing benzos which are her self medication of choice.


I also know a lot of kids on spectrum who complain about hair. ASD always includes a sensory piece, but sometimes this is about what hair represents. I've known more than a few teens on spectrum who have shaved their bodies in a bid to undo the changes associated with puberty and a number of kids who had gender identity issues- sometimes it's a simple as wishing they were a the opposite gender because they perceive things would be easier or better. A few kids I know have been twins where the one on spectrum sees their unaffected twin as "lucky" and figures acting like them will improve things for themselves. 

Sometimes anxiety can exacerbate sensory issues.

Anyway, I took her to cut it - she explained to the hair dresser what she wanted - and got a very cute, but very short cut.  And, of course, it feels the same way.  So now she wants her hair back AND her remaining hair is still uncomfortable.  And, getting her dressed is near impossible.  I had a non-dramatic morning this morning but we had to pack her clothing in her backpack and get dressed in the PreK parking lot.

Ugh, that sounds awful.

I see that she is really trying.  She has 2 speech therapists but I think she needs a behavior therapist or psychologist, neither are on the Division of Developmental Disabilities coverage.  


I was just going to suggest working with a psychologist. My DS has ASD, ADHD and GAD. None of his team (psychologogist, psychiatrist or his former dev pedi) takes insurance so we pay out of pocket. Some years we hit the deductible and can get paid out of network, otherwise we pay. Having someone who gets DS is worth paying. 


A lot of what you've written makes me inclined to seek out a dev pedi. I'm not saying I think she's on spectrum, but she does sound a bit like a lot of little girls I know who are. being a twin raises her risk a bit as well. She has a lot going on and it could be that a more holistic approach could get a coordination of therapies and school accommodations/services to help her be her best self. 

Has anyone found good ways at dealing with real extreme sensory issues,


DS had some pretty intense sensory issues as a preschooler. Pre-dx we sort of muddled through with really expensive Hanna Andersson clothing, sunglasses and leaving when he got overwhelmed. Once he was dxd around 7, we took a behavior approach to his sensory issues and did well with that. The kid who could only wear soft cotton and hated to be hot eventually got to be able to wear a synthetic Class A in 110F heat or march in a balck wool band uni in similar weather. 


and low self esteem due to their delays?


You can't give her good self esteem; she has to earn it. And she's the only one who can.


What helped DS was working on the things that were really challenging for him personally until he got better at it. His dx reads like alphabet soup, in addition to the other dxs he has dyslexia and some dyscalulia. His self esteem is more intact because he knows himself well and can be proud of how hard he's worked to be where he is. The one thing that he claims helped him was validation that he had it harder then some others and being proud of him for the efforts made as well as the successess.


How can I make her comfortable in her own skin?


I'd start with therapy. DS did well with CBT to reframe how he looks at things. 

And now I am off to go cut my hair super short as well because it will make her feel better (she is going to hold my hand, lol).  I dont want short hair!

Uh? I could see this being solidarity, but I could also see a real risk of the drastic change for you freaking her out completely. I wouldn't do it. IMHO, this is an inappropriate amount of "responsibility" to give a child who is well developing emotionally. It's funny, I was just talking about this last night while I was getting my hair cut. My DH and niece were with me and we were laughing about how angry my niece was when I cut my waist-length hair to a bob when she was your DD's age. I'm her favoritae adult in the world and she didn't have anything to do with me for weeks. My stylist laughed that he recalled his moms cutting her long "hippie hair" and not being able to forgive her. 

[oliviapope]

I am so sorry you are going through this. I would also suggest OT. We did not find a solution for the confidence and sensory issues until we found an OT who uses a specific non-traditional method. It has worked well for us, so I would start with an OT.

[macchiatto]

Gumi!! I haven't seen you in a while; it's so good to see you!

I'm sorry your DD is struggling. OT was really helpful for my son's sensory issues. He was Dx'ed with moderate SPD when he was about to turn 3 but it's milder by this point (5.5.). He also had feeding therapy with an SLP for related issues. He also has Anxiety but I think we still need to seek more help for that. His DP diagnosed it but didn't suggest therapy for it; more strategies that we could use with him at home but I think he needs more.