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New & So Lost! Help!
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AnneF Offline
Newbie

Posts: 8
Joined: Sep 2012
#1
New & So Lost! Help!

My 3 1/2 year old's Co-Op teacher suggested we get evaluated for SPD when she was having trouble having my son sit in circle time (which was only occasionally b/c sometimes he did fine). She felt he was overwhelmed in class. I found it hard to understand b/c I felt like he was really thriving. (It's a Co-Op where he's been since an infant and this last year I would attend w/him one day and another day drop him off and other parents stayed). I asked some other Moms in class about his behavior and they were just as confused. Anyway, we take him to the doctor and she doesn't really say anything just to get him evaluated. We get him evaluated and I include a write up from his teacher. The OT suggests coming 1-2x/week, but doesn't really give me any diagnosis. Our insurance will pay for 45 sessions so I figure it can't hurt to go until I figure out what is going on.

We've been going 2x/week since June and I have no clue what is going on. I've read Out of Sync child and I am not seeing how my son fits into this. At first I thought I was just in denial and not truthfully going through the check-list. It's been 2 months and I re-read it and I'm still confused b/c I don't see any connection. I feel like the doctor and the OT are taking the teachers concerns more seriously than mine. I am a stay-at-home Mom and I am with my son almost 24/7 except for the 4 hours/week that he is in Co-Op. I am feeling like the OT is frustrated with me and I feel like I'm frustrating her with all my questions.

We've been going for almost 3 months now, and I feel so lost, confused and alone. I don't know what to do. I'm thrilled to find this site b/c I just need to talk to other parents who are going through this. I just don't know what to do. Do I continue with OT in the hopes of getting more information? Do I go back to our pediatrician for an explanation? I just don't know what to do.

I feel like this whole thing has caused me to doubt my instincts about my son and now I'm questioning every thing he does and worrying is it normal. I'm so sorry to be so long-winded. It's just this is the first place I've had to finally vent.
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Heather Offline
Site Moderator
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Posts: 117
Joined: Apr 2012
#2
RE: New & So Lost! Help!

Oh wow! That is a lot! Well, take a deep breath, and know you are doing all you can. If I was in you position, I would be looking for a new OT that accepts your insurance. It seems like the OT that you have isn't going to give you very much advice for what you can do.

Also, another trip to the pediatrician wouldn't hurt either. When you make a appointment, tell them that you have concerns and try to get a appointment for when it is the least busy so the doctor doesn't try to rush on through. Voice your concerns to the doctor. They usually can give great advice for OT's in your area.

Hang in there! Know that we are here for you Smile
Heart Heather
Momma with SPD & 3 SPD Kiddo's <3
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LAC1961 Offline
Regular

Posts: 299
Joined: Jul 2012
#3
RE: New & So Lost! Help!

I don't believe your insurance would have covered the OT if there wasn't a diagnosis, so perhaps you could ask the person who did the evaluation for the diagnosis and to explain how they arrived at it. I had to request a copy of the evaluation as well. After I read the Out Of Sync Child I was absolutely sure my daughter was a sensory seeker, but when the OT did the evaluation, they diagnosed her with dyspraxia. I thought perhaps the OT just put dyspraxia on the evaluation because it would be more likely covered by insurance, so I asked her about it. She took several minutes before an OT session to explain how she arrived at dyspraxia. She agrees my daughter is a seeker, but the treatment to help her to function better at home, school and in society has to address the dyspraxia.
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AnneF Offline
Newbie

Posts: 8
Joined: Sep 2012
#4
RE: New & So Lost! Help!

I asked the OT what the diagnosis was and she didn't give me one. She has not answered any of my questions, so now I'm going back to our pediatrician to try to get some answers from her. I read Out of Sync Child as well as a couple of other similar books and I'm not finding any connection. Maybe, I'm in deep denial. I just don't know. I just wish someone would talk to me, and the OT just seems like it's a big imposition when I try to ask her anything. We started seeing her in June and I still have no clue what is going on. She'll tell me what they did each day, but not why they are doing it. It's frustrating. We will actually be looking for another OT b/c she has done a few things that I think are totally unacceptable. She did this thing where she scared him with a balloon (one that flies across the room and whistles) and he freaked out. I understand the theory behind it was to expose him to unexpected things, but every time we went back after that day he begs her not to do the balloon and she still does it. He's 3 and I just think she needed to go slowly and acknowledge his fear. Then yesterday, he hit her when he was frustrated and she said it was an impulse hit rather than an intentional hit, but she proceeded to grab him tightly, tower over him, got in his face and in a loud voice kept saying "why are you hitting, why are you hitting?" I happened to be there b/c it was time for me to pick him up and I was so upset. My son didn't cry, but he had this look of terror on his face as she was grabbing him and practically yelling. I felt her reaction was over the top and not really appropriate. We left and will not be going back. Now, I have to search for a new one, who I hope will be a better fit and able to talk to me about what is really going on. It's so frustrating!
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LAC1961 Offline
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Posts: 299
Joined: Jul 2012
#5
RE: New & So Lost! Help!

She sounds like a terrible OT, perhaps even on the verge of malpractice--nothing like the three we've experienced, who always answer our questions. I hope you find an OT that meets your son's needs.
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LynnNBoys Offline
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Posts: 277
Joined: Dec 2010
#6
RE: New & So Lost! Help!

I would not bring your son to that OT ever again. That's terrible! I would push to get a written evaluation and explanation. Go to your Ped again and ask for more info.

Have you been to this site: http://www.sensory-processing-disorder.c...klist.html

When I read through this checklist, I just knew it described my older son in so many ways. It was my Aha moment. I finally had an answer. Autism and ADHD didn't feel right to me, didn't explain things. So if you're being open and honest with yourself about your son, and you still don't think it fits him, I would speak up.
Lynn Shy
mom to 2 boys, one avoider and one seeker
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heather40 Offline
Busy bodys
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Posts: 210
Joined: Sep 2012
#7
RE: New & So Lost! Help!

(09-09-2012, 08:44 PM)AnneF Wrote: My 3 1/2 year old's Co-Op teacher suggested we get evaluated for SPD when she was having trouble having my son sit in circle time (which was only occasionally b/c sometimes he did fine). She felt he was overwhelmed in class. I found it hard to understand b/c I felt like he was really thriving. (It's a Co-Op where he's been since an infant and this last year I would attend w/him one day and another day drop him off and other parents stayed). I asked some other Moms in class about his behavior and they were just as confused. Anyway, we take him to the doctor and she doesn't really say anything just to get him evaluated. We get him evaluated and I include a write up from his teacher. The OT suggests coming 1-2x/week, but doesn't really give me any diagnosis. Our insurance will pay for 45 sessions so I figure it can't hurt to go until I figure out what is going on.

We've been going 2x/week since June and I have no clue what is going on. I've read Out of Sync child and I am not seeing how my son fits into this. At first I thought I was just in denial and not truthfully going through the check-list. It's been 2 months and I re-read it and I'm still confused b/c I don't see any connection. I feel like the doctor and the OT are taking the teachers concerns more seriously than mine. I am a stay-at-home Mom and I am with my son almost 24/7 except for the 4 hours/week that he is in Co-Op. I am feeling like the OT is frustrated with me and I feel like I'm frustrating her with all my questions.

We've been going for almost 3 months now, and I feel so lost, confused and alone. I don't know what to do. I'm thrilled to find this site b/c I just need to talk to other parents who are going through this. I just don't know what to do. Do I continue with OT in the hopes of getting more information? Do I go back to our pediatrician for an explanation? I just don't know what to do.

I feel like this whole thing has caused me to doubt my instincts about my son and now I'm questioning every thing he does and worrying is it normal. I'm so sorry to be so long-winded. It's just this is the first place I've had to finally vent.

Will your insurance pay for a Neuro Ped? I took my son to one to have him given a diagnosis because the school was giving me such a hard time even though he had just spent three years in Easter Seals getting 6 hours of Occupational therapy a week plus speech and developemental. My peditrician had told me that there was nothing wrong with my son, when I knew there was. Maybe a different Dr. or different OT. I go over the check list all the time only because it just boggles my mind all the different things. Good Luck you will get this figured out.
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Indy1 Offline
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Posts: 11
Joined: Sep 2012
#8
RE: New & So Lost! Help!

I don't think you are in denial. Your child may have SPD, or your your child may just be responding differently to some internal or external change. Diagnosis are very subjective. People have pet theories, or get can get stuck in rigid "proven" diagnosis.
I think you should absolutely trust your instincts and observations. Sometimes kids just need a break. Normal has become very narrowly defined these days, it seems.
You should ask the teacher for a detailed description of what she is observing that concerns her. It may be that she is picking up on something that is apparent in a school environment, or to her because she is tuned into something. It could also be that she just has an unrealistic expectation that kids should always be able to do whatever they are required to do, at any time, and if they withdraw, there is something WRONG, rather than something wrong in the immediate sense.
It is important to consider that your that your son may be very comfortable with you and your mom, but that he may express distress in the school environment, so you don't see it, although it is curious that the other parents don't see it either, but they often don't see "it" when something is really wrong.
Unless your child needs urgent medical care, don't let anyone do anything to him that worries you, unless you get a good explanation and you feel it makes sense. Therapists can help, but thay can also harm. So trust yourself on that too.
3 is an age of big changes. Kids are constanly revising their understanding of their place in the world and in relation to everything.
Maybe circle time is after snack and your son's stomach is bothering him or he feels a need to go to the bathroom. I would investigate the details and see if there is a pattern of withdraw which indicates sensory defensiveness or something else. You may even want to hold off on the OT until you have a better sense of what he might need it for, since it sounds like there is an absolute limit on the number of sessions your insurance pays for.

I second the suggestion for a ped neurologist, although they have pet theories too, they can at least look for any indications of a neurological issue.
(This post was last modified: 09-27-2012, 01:33 AM by Indy1.)
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