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I am a mother of 3. A 16 yr old w/ADHD. My duaghter turns 4 in OCtober and was diag. w/PDD-NOS, borderline autism w/greatest delay in speech and gross motor. I also have a son turning 2 this month. He is typical in development.

I am not doing so good right now. I feel very alone because family and freinds don't want to support me for fear that Anna will "grow out of this" I guess. Being mild or HFA makes me even say sometimes "is she ok?" or "Maybe it isn't autism". But, then, well the things I see everyday and deal with are common w/autism and I realize, no, she has special needs.

I don't fit in with those groups who support autism because Anna is so high functioning. I don't fit in with typical parents because they don't get it. And it is hard to be around my friends w/kids my daughters age and younger who are potty trained and having real conversations.

My daughters thoughts are so, well have you ever looked at an abstract painting and wondered "what is this artist trying to say?". That is how my daughter talks. I listen and think, "ok, she said sometihing about a tree and a swing...OH the park ,she is talking about the park we went to a month ago.".

I wish I could be one of those parents that have it together and have all the therapies and diets figured out. Here it is a year since her dx and I still don't understand most of the terms used on these boards.

I pray, I do all the mental things I need to do to deal with this and yet I still feel very sad and feel sorry for myself. Tomorrow, I will kick myself in the butt for feeling this way and get back in gear. So it is with this rollar coaster ride I didn't want to be on. I feel better in knowing that I am not alone. And that others here deal with this to.  Sad, but all I have is people in the forums and the sites online that give tips and advise. Thank God for this Internet!

Mary, 
Welcome to this forum.  I'm sure we can all empathize with you and the feelings of being on a roller coaster.  Some days I'm up, some days I'm barely holding on.  Everyday I hate autism and how my son is in its grips. :/  It always surprises me that for a disorder that seems to be so widespread, it's very difficult to meet other parents (IRL) whose children have ASD.  Maybe be/c we're all so busy carting our kids around to the different therapies!  I agree that havingthe internet to chat with people when one finds a precious few moments free is a Godsend.
Kellie

Hey, you most certainly are at the right place.  I have found loads of support and encoragement here.  All 3 of my kiddos are on the spectrum, my 3 yr old daughter as well.  She was dx with mild PDD and people around me always want to say, there's nothing wrong.  You just need to try harder, etc... until they spend some real time with her.  Her speech is much better, but still tough to figure out at times. And, she is not potty trained at all yet.  She is actually 3 and 1/2.  People think that is wierd, but oh well.  You learn to ignore those people... LOL

Anyway glad to have you here and we are all here for ya!

Rachelle

Mary,

I know just what you mean about fitting in.  It's just really difficut and I still haven't figured it out very well.  I have my odd set of eclectic friends (most of whom I've met throgugh treating Paul) and then the various play dates that come and go.  This one is too high functioning--this one is too low.  This one was great but now he's outgrown wanting to play with Paul, etc.  I finally let it be ok that I don't do the whole typical family hangout stuff in the 'hood or with the school.  I participate but keep my mental health and my son's foremost. 

By the way I've been doing this 10 years and there is not a day that goes by that I don't think of something I should be doing, or doing differently, implementing, learning, trying.  It's the nature of it.  I'm so glad your here.

Mary,

Welcome to the board!!  Guess what????  You fit right here

Just wanted to tell you that we all have been on that roller coaster and here at this board we seem to ride it together...sometimes it's exciting...sometimes it's a frightful ride...but here..no matter where are children rank in this spectrum...we seem to do it together.  So glad to have you join us!!!  Take care,

Karrie

mary,  i feel exactly the same way.  no one around me seems to understand the extent of keiths tantrums or quirks, and what is a typical day for me. my 5 brothers do not understand that i am not JUST a sah mom. none of them understand why i  CANNOT take my mother (79) to her dr. appointments, even though i DONT WORK.  my child is almost 5 and still bms in his pants (but its getting better).  and my friends dont understand why i cant have lunch dates or play dates on their lunch hour from work....

i think i have found my home here on this forum. thanks

kate

 

Thanks you all soooo much for your kind words. I do feel so much better after reading your post.

Anna is almost 4 and isn't potty trained yet either.  I try not to allow myself to get sucked into those thoughts "she will grow out of it" because she isn't and well, its not helping her now if I'm not pro active.

I am so thankful I found this place. (:

Hi Mary and welcome I am sure all of us here can relate to feeling like you don't fit in!!! You will find so much info here even if you aren't looking for it!! You will also find support if you are having a rough time. I know what you mean about the absract painting my son will talk about things and we will all have to try to figure out what he is talking about!! Usually it has something to do with where we went or something that happened on one of his movies!! Like they say try to put together the pieces of the puzzle!!! I will tell you also that since my son was 3 years old things have gotten easier with him he is communicating alot better and behaving bettter too, I owe alot of that to ABA therapy and hard work!!! Good luck and I look forward to hearing from you.

                                                  Nita

[QUOTE=themary]Anna is almost 4 and isn't potty trained yet either.  [/QUOTE]

thats ok. my baby just turned 6 and still is not even close to being potty trained yet. she's gone potty on the toilet twice (YAY!) but still does not get the concept of it. i think those two times were just pure luck. also, she cannot be trusted in the bathroom.
big welcomes themary,just wanted to say welcome. i have a 5yr pdd-nos and not potty trained either.we are all here for you.this place has been wonderful for me. don't worry were glad to take that roller coaster ride with you so that you won't be alone. take care and smile it helps.mom2carloWELCOME MARY!!!! This is the one place where you can and will feel the support no matter to what degree or level of functioning your child has!  There are parents here of all ages and stages and the thing is no matter what we all care and UNDERSTAND! Hang in there I'm sure you are doing the best you can and that is all anyone can ask! Glad to have you here!Mary,

You sound as normal as anyone in this situation can be.  Just at lunch today my 7 year refused to go to the bathroom at a resteraunt.  That was one of those straws, my wife snapped and left me, daughter, my sister and her daughter at Chili's.  The bad part was she was our ride.  She did come back though. 

Some days are just really crappy, there is no denying that.  I think if we didn't feel bad about our situation at time then it means we have gone numb. 

I don't pretend to understand why my child is the way she is.  I have quit pretending that I have all the answers.  I just do the best I can do.  And when school starts I am fortunate enoughto have my office only two miles from home so I get a nap as often as I need it.  Sometimes naps make all the difference.

John

Welcome Mary!

This board has been a godsend to me, I just posted for the first time a week ago.  I can't get enough because there is so much support and information from real live moms, dads, grandparents that live it everyday like we do. 

My DS is 4.5 and is high functioning also and sometimes I doubt the autism too but then reality hits!  We have a hard time too with "fitting in".

DS is waiting to get into an Early Intervention Program.  Until then we just muddle thru as best we can.

 

Mary, some days I just don't want to get out of bed.  I don't know if its coincidental or not, but on those particular mornings, Noah comes into my room and is the sweetest angel imaginable, although sometimes that mood doesn't last all day, but it is enough to get me up and going.

I am his primary caregiver because he doesn't let anyone else do for him.  My life is Noah 24/7 (my only break is when school is in session-thank the Lord.)  I use to try to balance friends, in-laws, and so forth and couldn't keep up emotionally or mentally.  So I opted for the most important priority, Noah. I just concentrate on whats best for him and myself.  Thankfully, I have a VERY understanding husband and my two girls are young adults with lives of their own and don't need Mom so much anymore.

Just keep plugging away and don't worry so much about others.  Keep yourself healthy for the kids.

 

 

 

OOPS--forgot to comment on the potty training.  Although I don't know if you'll want to hear it.

It seemed to take forever for Noah to get the hang of it.  With urinating, he was trained at about 3 yrs, which wasn't too bad.  But with BM's, it wasn't until about 5 yrs old and he had this nasty habit of hiding in his room to do it in his pant and smear it all over the walls, door and floor.  I couldn't figure out what would possess him to do such a thing.  No matter how we reprimanded him for it, he still did it.  This was every day for about six months.  And of course, no one else wants to clean up that kind of mess, so it was left up to me.  AAAGH, discusting.

Now, you all might be wondering where I was when all this was happening-(LOL)  You all know how loud and disrupting with aggressive behaviors our kids can have.  Noah would scream all day, everyday when he was little.  Just scream and cry.  So on the occasion when he would be quiet and playing in his room, I wouldn't bother him for fear of starting the ruckus all over again.  That would be the time that he would make the mess.

So, that was my reward, so to speak, for an hour of peace and quiet where I could get some things done.  What a reward!!!


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