I don't know where to start looking for help. - Mothering Forums

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#1 of 4 Old 08-27-2011, 08:17 PM - Thread Starter
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I'm not even sure I belong here yet but I'm realizing that I need help and I need to follow my gut on this.


I think Ds1 may be on the spectrum.  Or at least has some serious sensory issues.  He will be 5 in November and I've been noticing things since he was a baby. Little things, not obvious to most people.  I have ADHD and am very intense and at first I thought maybe he was just a spirited kid like I was.


we've been through a lot of phases - last summer was really bad and I started to think about looking for an OT or someone to help.  I ended up talking to our ped about it (a new one, we had recently moved) and she seemed to take me seriously when I showed her the list of behaviours I was concerned about.  Then she did a 'consult' with him and told me that she didn't see any red flags but that he was incredibly intelligent, that it might be beginning signs of ADHD and that it was mainly a discipline issue - basically I needed to be more firm with him.  She told me to put a gate up in his room and let him cry until he stopped and that he may throw up but he needed to learn how to calm himself down.  I was obviously not happy with this - if I thought he could calm himself, I wouldn't be so worried - but wasn't sure what to do next.


Then he started preschool and the behaviors didn't disappear but they were so much better.  His teacher called him quirky but told me she didn't see any signs of aspergers or anything like that.  I did notice that she was very physical with him and he really responds to that so I think she handled him well in the class.  The teacher's assistant did mention to me that she noticed some of his tics but they were all charmed by him and told me how expressive and intelligent he was.  I thought maybe he was growing out of it.


The past month has been horrible.  Just an example - his tics have gotten progressively worse, we are back to multiple screaming fits a day, he is unable to let any topic/argument go and move on, his speech is broken (he stutters and repeats things - seems like he has trouble getting the words out), he is unable to control his body and is always flailing all over or running into me, he is having pee accidents again, it takes hours to get him to sleep...  He gave himself a huge rug burn last week beside his eye because he had his head on the ground watching the wheels turn on his train as he rolled it on the carpet.  I feel like we are cycling back to where we were and the underlying problem doesn't seem to be going away.   Except that he is bigger and stronger now.   I am 19 weeks pregnant and I cannot physically control or contain him when he loses it.  And I have a 2 year old that doesn't understand and looks terrified when his brother starts screaming for hours.  There are just too many times that he is left alone while I am trying to deal with ds1.


Okay, so this is a lot longer than I intended but I'm not sure where to go from here.  we live about an hour from Kennedy Krieger and the one friend I have that sees the same worrisome things that I do thinks I should just go there.  I don't know if that's where I need to be or if I should try to find an OT that is closer or what.  I am switching peds but haven't seen the new one yet and I'm not sure if I need to go through them first or not.  The problems are so subtle sometimes though and not at all obvious to most people - I feel like I need someone really experienced with these kinds of things.  Most people have no idea what I'm talking about.  That's part of why I keep putting off pursuing this.  Maybe I'm crazy.  But my gut tells me something is not right and I have no idea how to deal with it :(

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#2 of 4 Old 08-28-2011, 12:29 PM
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Yes, call KK and set up an appointment. It may take a few months to get in. But definitely see what is going on and what can be done. We went to KK for the diagnosis, and they were good. But they are too far for us to use their therapy services. For that reason, I'm also wondering if there is a center closer to you down there, so you could get a diagnosis plus take advantage of the therapies.

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#3 of 4 Old 08-28-2011, 02:37 PM
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Is he in public school? (I'm not sure how it works if you homeschool or are going private; I think it varies by location). You can request evaluations with the school--I posted a link to wrightslaw's Child Find page which I recommend reading.


Even without an eval you can go on your own to an OT and ST; businesses frequently offer both services. Ds was evaluated by an OT before he saw the psychiatrist or the clinic and it was very helpful in explaining him to the school; I asked her to write the report with the school in mind. Ds was at his worst between 4 and 5.5yrs and it also took hours for him to go to sleep; once we started Melatonin it got a lot better. I also learned joint compressions and brushing from his OT which also helped him get to sleep--I've since added using Lavender lotion after the brushing.


Though we first took ds to a psychiatrist, we were waiting on an appointment to the hospital behavior clinic; it was a 3hr evaluation by a developmental behavioral pediatrician, a psychologist, and a speech language pathologist. Though they did the evaluation they do not do therapy; they did have a list of referrals. We worked with an OT/ST this summer but we are doing special education testing with the school so he can have services there. Ds' hospital required a referral so I made a bullet list of his behaviors using ADHD/Asperger's/SPD behavior categories as a guide and took it to our GP (along with ds' behavior reports from school). The GP signed off on the referral and I sent it into the hospital. I could send you the list and the eval/results if you'd like to see an example. I wanted the hospital evaluation because I wanted a thorough evaluation by specialists to ensure I was addressing all the issues ds has.


The Child Find Mandate: What Does It Mean to You? - Wrightslaw


Special Education Topics and Services - Wrightslaw

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#4 of 4 Old 08-30-2011, 09:07 AM
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I agree with the PPs about seeking an OT eval on your own in order to address the sensory issues while waiting for a full eval from a dev ped...


My DD was seen at KKI's CARD at 5 years old...if you'd like more details, feel free to PM me. I was NOT happy with the developmental ped we saw AT ALL....I'm happy to share details via PM...that said, the PhD/SLT we saw for the ADOS was very good.

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