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Please Help with Big Team Meeting today (long, sorry) (eta: please)

AmamsnebAmamsneb
in Special Needs

Hello all.  My DS was a 28 weeker so he's been in EI since early on.  He's 22 months now (about 18 mo adjusted).  We've had a LOT of trouble getting the Early Steps program and his pediatrician to participate with us in helping him get services.  I finally called up the chain of command when I started noticing my son exhibiting repetitive behaviors, loss of the few words he had and avoidance of eye contact.  He's also very sensitive to certain textures of food, avoids touching certain things, likes to spin his toys...a LOT, responds to his favorite songs, but not his name, etc. etc. etc.

We had a re-assessment on Monday by a SLP, a developmental school psychologist and a graduate level clinician.  In addition, he attends an EI school for kids age 1-3 and they did independent speech and OT evals on him within the past few weeks.  

The language assessment (REEL-3) showed that his expressive and receptive language skills fall below the 6 month level.   

The OT assessment (HELP) indicated that his fine motor skills fall in the 11-12 month age range.

At Monday's assessment, I looked the psychologist in the eye and said, "Okay, based on the issues we're seeing in B, you know what I've been finding when I google.  Do you think we need to be worried here?"  Her response was that she hesitates to label children this young, but that if pressed, she could feel comfortable calling it a PDD, and would do so officially if it would help us get him services he otherwise couldn't receive.  She also felt confident that a developmental pedi would make such a diagnosis.  I erred on the side of caution and asked her to hold off, but she said I could call her anytime in the next six months if I changed my mind.

So I have a lot of paperwork in front of me, and we're having meeting this afternoon at his school with his teachers and his care coordinator through Early Steps. The paperwork I've received seems limited.  They talked (and wrote) a lot more in Monday's assessment than they've put down in his "Summary of Present Status." I feel like we don't have all of the information here that we need to have this meeting.

What questions should I be asking?

Should I be aggressively seeking a developmental pediatrician? (funds are extremely limited)

Should we push for a diagnosis? 

Should I fire my pediatrician for continuing to give me platitudes about how lots of kids are slow to do xyz?

Where is the book that tells me step by step how to do this because I feel so freakin lost and alone?

Will I ever be able to just play and cuddle and hold my son again without obsessing over whether he'll ever call me Mama, or look me in the eye, or tell me what he's feeling?  I feel like I can't see HIM right now....just a set of behaviors that are scaring me to death.

Does the guilt ever get better?


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Re: Please Help with Big Team Meeting today (long, sorry) (eta: please)

  • malcivarmalcivar member

    {{hug}}

    First off, before age 3 you're not going to get a big dx, or the A word if that's what you were thinking.  It's just too early. DS was evaluated at 23 months and was diagnosed with PDD NOS at 24 months.  He had a lot of what you say yours has - won't respond to his name but will run into the room at the sound of his favorite song.  Don't be afraid of a dx.  I can tell you that our son has made tremendous strides in a very short time.  He responds to his name, he makes eye contact and at the ripe age of 27 months now says "mama" and means it.  

    I would say take your pediatrician's word on your child's health - physical.  DS's pediatrician swears he's been overdiagnosed - some days I agree with her, some days I feel that that's not necessarily her specialty.   

    I'm not one for advocating self-testing your child but this may help you and might also help you come up with questions.  

    https://www.wierdkids.com/wierd/autism/cars2.htm  it's the CARS test and was one of the tests used when DS was evaluated.  The questions themselves are very enlightening and have helped us see just how far DS has come.  

     

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  • JcrabJcrab
    I am sorry that the adjustment phase to kind of getting diagnosed and trying to find and fight for the right therapy is so hard, it's really brutal and so hard on the emotions. I would definitely want a new Pediatrician, unless a developmental pediatrician or the like can take over that area of his care. My Pediatrician said that DS is doing everything he should be, however a comprehensive developmental test with the D. Pedi showed big cognitive and receptive speech deficits. It sounds like you are doing everything right and being proactive with his care. Try to appreciate the little things he is doing well and find outlets for yourself to recharge and vent. I deal with the guilt by knowing I did everything in my control to take care of myself while pregnant and everything for him once he was born, it is not my fault the placenta didn't function correctly and he has cerebral palsy; I assume some of your guilt is his prematurity which likewise was not your fault. The guilt and worry comes in waves but at times it gets better. I hope your meeting goes well, continue to post and vent here. 
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  • AmamsnebAmamsneb
    Thank you so much to the ladies who responded.  I really appreciate it.  The meeting went fairly well, and we're in the process of trying to find a developmental pediatrician.  I have to say I'm a little surprised I didn't get more of a response considering the post view count, but again, thank you so much to the ladies who did respond.  
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