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pointless vent.

kcisthebombdotcomkcisthebombdotcom member
in Special Needs
Im finding it hard irl to find people who are going through the same thing/have been through something similar. i feel like i don't fit in and have anything to offer to special needs groups since it seems more kids with medical issues. i even got "gee your kid doesn't seem autistic" from the autism group (which you wouldn't think would happen there) and i can't really relate to dealing with outbursts or.repetitive and/or.restricted play or rigidity because were not there yet. I suppose with time my child will act more autistic and it will be easier but in the meantime it sucks. it does make me really grateful for this board.
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Re: pointless vent.

  • realisticdreamsrealisticdreams member
    We have this but for medical issues.  The girls LOOK mostly typical so people have a hard time understanding the huge amount of things they have endured and how it affects us all.  I loathe being stuck in the middle and feeling unwelcomed no matter where we go.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • algalphysalgalphys member
    I'm sorry that must be tough! I live in a pretty small community and I don't know any other apraxia moms but I have found another special needs mom and we are kinda connecting but I only see her once a week and that will go out the window once I go back to work. I'm hoping if I can get DS1 into a preschool program that we will make more friends...
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  • typesettypeset member
    It's hard to find other parents, but it's absolutely worth it even for that five minute chat in a waiting room when the other person just gets it. We were told flat out by a speech pathologist that "other autism parents are going to hate [our] guts." We've had success seeking out Asperger's resources for him. AANE has been a godsend. 
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  • bumpuser511563bumpuser511563 member
    edited January 2014
    I am even in a ASD support group and yet I still feel alone.

    I am one of the very few full time working parent and there is one other parent with a child the same age as DS but she hasn't been coming.

    I have trouble even starting conversations enough to be a socialite. It comes easy for others.

    I like our board when I feel this alone at times.
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  • kcisthebombdotcomkcisthebombdotcom member
    typeset said:

    It's hard to find other parents, but it's absolutely worth it even for that five minute chat in a waiting room when the other person just gets it. We were told flat out by a speech pathologist that "other autism parents are going to hate [our] guts." We've had success seeking out Asperger's resources for him. AANE has been a godsend. 

    Hm checking out aspergers groups isn't a terrible idea.
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  • typesettypeset member
    edited January 2014
    SpEd PAC meetings are usually a good place to find people in similar circumstances with the added bonus of getting the skinny about district happenings and personnel. 
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  • lite-brightlite-bright member
    I can relate. I went to one support group for our state ASD advocacy group and most of the kids were teens who also had Down. I was the only one with a child under the age of 5 and no comorbids. One college-aged girl who attended had Aspergers. It was good to talk to her but not really "support" as it were. 

    Turns out that the head of the group has a teen daughter with ASD and Down, so she was really plugged in to other parents in the same boat. Which is great for them, but it has meant that I get most of my support one-on-one with other parents that I find through preschool/kindergarten. Especially in preschool, I could be pretty sure that anyone whose kid rode the bus was dealing with some kind of SN and it made me a little bolder about approaching them and being open. 
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    DD1, 1/5/2008 ~~~ DD2, 3/17/2010
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  • mightmom13mightmom13 member
    It's hard to find other parents, but it's absolutely worth it even for that five minute chat in a waiting room when the other person just gets it. We were told flat out by a speech pathologist that "other autism parents are going to hate [our] guts." 
    I live in a small community too - but when you open up to people who might be or know what you are going through - even just a blurb word in a conversation you might find some people. My heart about burst open today when I mentioned something about DD's hip abductor issues to the PT at work, AFO's and SMO's - she said her DD had those too and what for and I said mito and she said me too....she mentioned that the nurse upstairs had a kiddo with mito as well and that developmental pre-school had been a God-send to them. I mentioned something about getting into a pre-school and DD counting, ABC's etc but isn't potty trained and she said her kiddo is potty-trained but can't get the walker to the bathroom in time. It was the best 5 minute sharing session I have had in....well ever!
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