Questions about family and PDD-NOS
My 4 year old just got a diagnosis of PDD-NOS. She has some traits of a child with AS but not enough to get that particular diagnosis so thats why she was given PDD-NOS. The first time we tried to have her diagnosed they said she was just "spirited" and the second time they weren't sure but thought maybe ADHD. In a lot of ways she's like any other four year old ( as far as liking the same toys, TV shows, loves running around at the playground, reading with us). But she has a terrible time in social situations with lots of people around or with more than one new person at a time. She gets really uncomfortable and gets really hyper etc. At the same time she' sometimes approach a stranger in line at the super market and tell them all about the toy she's holding. It's hard to get. She gets freaked out over small things too. Like certain noises and textures. But it's obvious that she has an easier time with adults and older kids than with her peers.
Anyway here is my question. She is very close to myself, her father and grandparents etc. We have a great time with her. My husband thinks she's the best kid in the whole world. We all adore her. As she grows and if she continues to have a hard time socially will she still be close to us? Or will she have a hard time with us as well?
Thanks and I hope this is not a silly question.
-Kitty
p.s. We're trying to find out what resources are available to her. Right now she's not getting much.
I'll tell you my own experience. As a young child I was very affectionate, in fact overly so. I was always all over my sibling, and with my parents. But this changed as I got older. Communication problems made things harder, and my sensory issues worsened. I wouldn't let anyone touch me, and I could not communicate very well and had a lot of emotional problems. I didn't have the concept of what a friend was until late elementary school; I always stood next to the adults at recess.
Up until recently I would just yell at my family if they tried to talk to me, or ignored them, and spend all my time alone. Once I became more aware of my problems I've been trying to communicate with them more. Even if I can't hug them and such I can still do other things, but if I described them it'd probably just be seen as really weird. Like pretending to hit them, or laying on the ground where they stand. I'm sure if an outsider were in my house they wouldn't understand anything, lol, but I don't know what else to do.
If you've got an early diagnosis I'm sure things will go better than they did with me.
CockneyRebel
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She'll have a hard time with you as she grows, yes. It's called "being a teenager".
Oh, you meant due to the autism? No, no more likely than any other child. She'll learn she's got her own opinions, and probably go through the "terrible twos" (yes, she's four; we go through them late a lot of the time), and eventually probably establish her own opinions and identity, like most teens will do around fourteen or so. But everyone goes through those stages--first to figure out that she can want things other than what you want, and then to figure out exactly what she does want. I don't know if she's your first child; if she isn't, I guess you know that already; if she is, then remember that you can't just automatically say "It's because of her autism" when you see her do something you don't like--sometimes it just means she's being a kid! (Conversely, of course, one mustn't attribute malicious intent to honest mistakes or impairments.)
If you make it clear to her that you love her and her autism, that you want her just the way she is, and that you'll help her make her own way, then you can make a good, safe home base for her while she's growing up. Autistic kids often have a lot of problems at school because we're easy targets for bullies and don't fit into the education system very well, and she'll need a few people who love her unconditionally and don't mind turning Mama Bear if necessary.
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Thank you for your replies and welcomes
We will love her no matter what. So I hope she always feels comfortable and safe here. As far as the twos thing I'm happy to say she actually went through the terrible twos just about the right time and we haven't seen tantrums since three. She has actually gotten a little easier as she has gotten older.
Sometimes it's hard for me to tell though what is behavioral and what might be PDD-NOS related. Like the other day she didn't want to clean up. And she was acting all silly and hyper and being kind of defiant, etc. But she had been asking for a sandwich from Safeway all morning. Finally I said if you really want that sandwich from Safeway you'll have to clean up that mess. And she rushed to clean up her mess.
BTW I'm having some doubts about her diagnosis. I just feel like maybe we are barking up the wrong tree and that the real issue might be sensory proccessing disorder more than the PDD-NOS even though she is having problems socially. For instance the Dr. doing the diagnosis said my daughter doesn't make eye contact. But we who are around her all the time know that she does make eye contact at the right times for the right amount of time etc. But the Dr. said to my daughters " can you look into my eyes?" and my daughters response was " why do you want me to look in your eyes?". She also said that my daughter would not tell her a story when she asked but my daughter is actually very good at making up stories. My daughter is very at ease in certain situations but certain things get her totally wound up and they all have to do with sensations ( sounds feelings visuals tastes etc). I feel like maybe the doctor pushed her into this diagnosis because she wasn't quite sure what it was. I have a chance to discuss my thoughts with the school district though when they do the IEP. My main concern about getting the right diagnosis that I want to understand what exactly is going on for her and for her to have the right services in school and in therapy. I have to pay for this and everyones keeps saying early intervention is important, but you have to know what your working with to intervene.
The people that say early intervention is important are wrong. I think four is way too young to be pushing someone into hours of therapy (what generally happens) and oftentimes kids are being diagnosed who don´t even need a diagnosis.
It may not matter particularly much because sensory processing disorder is a large part of autism in many cases; the next set of DSM criteria will mention unusual reactions to sensory stimuli as one of the traits of autism itself. She can access help for those sensory overloads with an autism diagnosis just as she can with an SPD diagnosis; also, autism will get her more services in many schools. So... it may matter less than it seems.
_________________
Reports from a Resident Alien:
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Autism Memorial:
http://autism-memorial.livejournal.com
Interesting. That gives me something to consider.
The people that say early intervention is important are wrong. I think four is way too young to be pushing someone into hours of therapy (what generally happens) and oftentimes kids are being diagnosed who don´t even need a diagnosis.
I disagree. One because I had problems in school at a young age. I was diagnosed dyslexic ( and possibly had ADD, but I'm not sure about that one didn't have a diagnosis for it). My parents got me a tutor briefly and I loved it and learned a lot. But because my hippie mom ( I love her ) was not really very involved in what was going on with me or my school she stopped the tutor. I was never really able to catch up no matter what and I really suffered and I wish more had been done to help me back then. I fell in with the bad crowd blah blah I won't go into it but basically things could have been helped.
The other thing is my daughter did a social play group through the child center near us for other kids experiencing similar social problems ( it was run by therapists) and she showed progress while in that group and was able to really work on some things. So I have seen that there are things that can help. She's done another group too but I won't go into it unless someone really wants to hear about it.
I have three sons on the autism spectrum, the youngest 15 was diagnosed with PDD-NOS. They are all delightful, wonderful human beings and very comfortable within our family group in showing affection and communicating.
I also have AS and I have no difficulty with eye contact or socializing in small groups with people I am very comfortable with like close family and friends, but with new people and in large social settings the eye contact and socialization can be much harder for me.
Love her and don't let a label keep you or anyone else from appreciating all that is wonderful and unique about her, just let the diagnosis help guide you and her future teachers in knowing how to help her become the best person that she can be and a confident, contributing member of society.
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