No one has encountered a kid like mine!

Kirsten - posted on 02/25/2013 ( 2 moms have responded )

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I won't bore you all with a long, drawn-out story of my daughter's life; but I will say that every counselor, therapist, and teacher who's been in my youngest daughter's life for more than a few months has uttered these words, "In all my years of (insert particular specialty), I have never seen a kid act/react like that!" The extremity of her separation anxiety when left at class, her fear of water until she was nearly four, her continuing fear of public bathrooms (even the bathrooms at home until she was 3.5), and her complete and total hysterics if we attempt to get her near a toilet--all these things have had therapists and teachers stumped for years. It's also made our lives...challenging, to say the least. We've only just gotten her started on OT (after fighting with our insurance company for 2.5 years), but that only helps a few issues--they tell us she has significant SPD issues. Then her doctor and the specialists say she's got ADHD and anxiety disorders--but they also say they can't do much about that. No one can help her because she doesn't have an autism diagnosis. So here we are with our house constantly disrupted by hot & cold extremes, all bursting out of this tiny little girl. She's going to be five in May--Kindergarten just around the corner--and I'm scared. She can't be in a new situation with new people without being in crisis mode; and doing all that without me there at her side is likely to result in the typical screaming chaos. Complete meltdown. And what about potty training? My little girl, who already has socialization issues and struggles to make a friend, would have to have her mommy coming to school once or twice a day to change her diaper because she's too afraid of the potty. I'm sure that would go over well with the other kids!
Okay, so now that I've had a bit of a vent, I realize that the question I'd meant to ask has changed. I want to know if any of you moms (or dads) have had experiences like mine. Am I really as alone as I feel? If any of your kids have been this extreme, what have you done to make life easier for yourself and your family? At this point, I'm pretty open to creative input.

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Kirsten - posted on 03/05/2013

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That is definitely the closest thing I've heard to what we go through with our daughter. It's good to know that I'm not completely alone. :)
We're working on trying to get the evaluation from the school district now. She's had so many evaluations from so many professionals that we've gotten to the end of our rope. Because she doesn't have an autism diagnosis, no one will give her the services she needs. It took us 2 years & two appeals just to get our insurance to see that she needs some form of OT (she gets OT for self-care, but they don't acknowledge SPD, so won't cover those services). Our pediatrician did send us to a pediatric developmental specialist & she was no help at all! She agreed that our daughter has ADHD and anxiety but is basically "normal" and told us that SPD wasn't a real diagnosis; and since she's not autistic, there's nothing they can really do for her. Hopefully, the school district will see differently.

Amy - posted on 03/01/2013

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To an extent I understand what your going through. My now 7 yr old, almost 8 in a few months, went some of the same issues you have with your daughter. My daughter would fear being around other kids and have a complete meltdown in tears. Anxiety was extreme. She does have SPD as well atop the anxiety. We have used a method used with a soft brush ( a special brush) to rub parts of her body which has helped as she was a tactile seeker. Over the yrs different meathods have helped her calm down. Fidget toys, chewing necklaces and bracelets, fuzzy party wristbands for rubbing, chew pencil tops, and good rub downs with pressure. She hated her hair washed so we covered her eyes with a wash rag, wet and lathered hair then sang ABC song for rinsing. For potty training it may be the sound of the water flushing that your child may be afraid of. I still have an issue on the bathroom at times in public for she thinks I'll leave. And, all in all, she has made much progress since she started school. However, I would recommend that you get her evaluated for a school setting by the school personel therapists. My daughter has graduated from private pt and ot yet is still in private St as well as ot and st through the school system. You don't have to be autistic or on the spectrum to have spd. Also, you may be able to get better answers as well through a pediatric developmental specialist. That is how I got most of my daughters diagnosis for she has several co-existing developmental impairments. I hope this is a bit of help to you. Your not alone. If you have any questions, you may msg me as well. God bless you and your family. Take care and best of luck.

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