Two steps back??? | Autism PDD
first of all *big hugs all round*
i'm sure everyone who has a ASD child can relate Mary,Jack is slipping like a eel at the moment i hate school holidays for this reason it is so hard to give him the structure he needs when school is not in the picture.I too can relate to all the well meaning people with there "words of encouragement"and whoever mentioned the people who have seen Rainman was so spot on its not real.What keeps me going is when he does something new or we have a good day how much it means because i know how hard he has had to work to make this happen and i'm so glad i read this post just now when i have spent the last ten minutes trying to get jack out of the corner he wedged himself into (between the very heavy chair and the wall)i nearly hyperventialated and was seriously begining to think i was going to have to call a neighbour to help me get him out but after much tugging he popped out like a cork,and guess what he thought it was soooo funny giggling away while i was going purple in the face i phoned my dh at work and told him "jack has a new game" all stressed out but after reading this i suppose i should be thinking well at least he asked nicely for his juice this morning.I am told i'm quite a negative person but my answer to that is if i expect the worst then everything is a bonus.I seem to be doing alot of venting today it has been a rough week and we still have a week and a half before school starts so please bear with me i need to get this off my chest and fopr some reason dh seems to have returned to ostrich like state this last week which is not helpiong anyone
Dee
The Mary, Thanks you so much for your post, it voiced my feelings so much better than I ever could have. I am sooooooooooooooooooooooooooo tired of free advise (LOL), yet I constantly seem to be asking for it (know what I mean?). It is like a loose tooth, it is there, I know it is and I can not leave it alone, ( hey, thats the best analagy I can come up with). It doesnt HURT me, but it bothers me.....always there, sometimes stronger than other times.
I have seen my true, private, gut instincts go from thinking everything would be ok (yeah, so and so didnt talk till age 6 and now is a successful brain surgeon who builds rockets for NASA in their spare time), till now I KNOW my son will not catch up or outgrow ASD. He will always be special and I find myself strangely accepting of this, most always, except when I seem to just go off and am in a blind panic about his future. Strange I know, but it is truth for me. Then we come to the overwhelming CHOICES of what to try to help him be the best he can be. This therapy and that diet and this drug and that kind of classroom. Most of it is instantly divided into what those with money can have and what those who are barely scraping by could NEVER afford for thier children. I must confess, that makes me very, very ANGRY!!!!!!!!!!!!!!!!! Now I try to not let it show, but it is so hard to accept that my child is being denied something that could maybe help him (notice I say MAYBE, to me none of it seems to have concrete proof that it does truly help every asd child), because we are working class people.
THe other day I met a family that has an asd child, this child has had 1 on 1 in home (very expensive) 40 hour a week ABA therapy when not in school, then 20 hours in home ABA 1 0n 1 when not in school. I am sure that well over 100 thou has been spent. He has the diet and the supplements and has a Dr in Fl, etc, etc, all the things that I had wished I could give my child. This sweet and darling little child is still autistic. He still can not talk, or consistently use any other kind of communication, he still has the same basic special needs my child does. It just slapped me right across the face, this child is not 'recovered' or 'cured' or outgrown his ASD.
Sorry that I am rambling, I just feel so lost, just dont know where to really turn to these days. I know we can not afford in home private therapy and I know that my childs anxiety, adhd and behaviors will not allow him (right now) to go to out patient therapy. I know that the school wants him in a regular class (ROTFLMAL, we jsut go tkicked out of private therapy where it was the OT (certified in SPD), myself and him and he couldnt participate) and they (school) thinks he doesnt need any special support or help.
Whew, I feel better just writing it all down!
Thanks again for listening!
I feel exactly the same way as all of you guys, especially the part about seeing other kids. Jake's 2 year old cousin, a full year and a half younger than he is, already has better language skills and I absolutely can't stand to be around him, it depresses me so much. I think he's doing so well, making such progress, and then I see how he's "supposed" to be and all my hopefullness goes out the window.
My ds isn't dx'd yet and has an eval next mth. But I can still feel what you are feeling. I have to snap fingers at Aiden all the time. I get SOOOOO frustrated w/ repeating myself! "come on aiden let's go. come on aiden. aiden? come on! aiden?" That is normal to hear. It's worse taking him places were he will tune out to look at things and I just can't get his attention. He does have on and off days though. There are some days where I'm pleasantly surprised w/ how well he was "staying with me" mentally I guess you could say. In fact he's been doing better in the last week. Less stimming and everything. He's gone through good weeks before. Makes me nervous on what to expect when he changes again. Last time he had 2 weeks where he was just doing so well and then he just went back to symptoms full force suddenly and even added new stuff to the list. (sigh)
And I have many people tell me things like "that's normal I see other kids do that too" and "his speech is getting better, in no time he'll be just like every other kid." W/ some I realize they are only saying that to make me feel better or even convince themselves because they don't want to think anything might be wrong w/ ds. I can understand that. I wish they would know it doesn't help but only often makes me feel worse and more alone. Some people though just outright tick me off w/ their comments because they act like an expert on it and probably know less than I did a few mths ago. Why can't they all just be like my wonderful long time friend, who says things like "well I hope everything will turn out ok. I do see where you are concerned though." She sees the things I'm talking about and makes nice comments w/out trying to give advice or be the expert. I have a handful of people that can see everything I do and are helpful and supportive...besides dh. The rest I have sort of been avoiding lately because I'm just tired of the comments. And after the eval, regardless of what they say, I just KNOW it's going to get worse w/ the comments and opinions.
Anyhow...just want you to know that you're not alone. Which you can see by all the responses :
Amber
i know that i find myslef comparing dakota with other kids who are doing things they are supposed on time etc but then i remember he is such a sweet boy and he doesnt even know he is not the same as they are. i feel sad that i cant fix things and make him all better but i love him so much and any accomplishment he does i am so very proud. we are all blessed with our kids for a reason and that is beacuse god knows we will love them and do the best we can for them as parents!!!!!!!!!!!!!!!just take a deep breathe and try to enjoy our kids each day and remember there are alot of people who care and you can talk too. sherry mother of christa 22, elijah16 and dakota 3 mild cp and newly diagnosed autism spectrum disorder not sure what all of that means yet just a bigger challenge and lots of suprises in store. take care sherryThe one thing I get tired of people asking me is how my kids get along. Well, how do two brothers get along? They get along like brothers, lol. Only thing is they never let anything drop, lol
Tammy
And you know also one thing is I love how each little thing he does is precious to me. I mean anyone thinks it is precious when their child reaches milestones. You take 200 pics of child's first steps and such lol. But w/ ds, it just seems like it means so much more for me. Like giving me a kiss for no reason. It's a gift to me. Because he doesn't give affection, and he has only done it 3 times to me and a couple times for dh, but NO one else. It makes me feel so special to be the one he decides to give it to. It's important to take in the good when you can. You asked how I cope w/ disappointment, and that's how.
Amber
Reading more respones I laughed (tammys comment about bad behaving normal kids) and I cried knowing Amber and everyone else here deals with this.
Everyones advise here is right on the money. I mean, the little things, the accomplishments they are just as real as the big things and the setbacks. I guess all of us have these bad days where we just want to throw in the towl.
Thanks again for the advise and sharing.
I really think this board has helped me stay sain.
mary
I know what you mean. I am so sick of people telling me I am a special mum.Mr friend's daughter was just like that and her mum just insisted on her being "with it" all the time. I would also be ready with praise for walking to the car quickly etc. Hold her hand and get her to move smartly to the car and get in and reward her. If there is something in it for her she will put the effort in.
My son was talking etc and people used to say how great he was doing. He still has a lot of needs and it breaks my heart. I don't think we can ever truly come to terms with the loss we have suffered and that our kids suffer every day.
I also think if you think she has an issue, then she has one. Keep intervening when she tunes out and I am sure that you will help her to improve in that area.
In the end I choose to enjoy the good things in life. I choose to find something to be happy about each day because I can't change what is happening and I am not going to let Autism ruin my whole life. And when it gets too much I talk to a friend or come somewhere like here to let it all hang out, have a whinge or a cry and then get on with it. It isn't easy being positive all the time. There are days I just want to scream. In fact, want to join me in one now? AAARRRRGGGGGHHHHH
I also rely on the serenity prayer a lot.
God grant me the Serenity to accept the things I cannot change...
Courage to change the things I can and Wisdom to know the difference.
I hope you continue to have the Courage to change things.
OH my, reading your responses have helped me so much. I suppose I was just having a rotten mornging. The emotions of Anna starting school again and a bad week brought it up to a head.
I am so happy and sad at the same time for knowing so many feel just like I do.
I know people have good intentions when giving those lines but sometimes it can really be the cherry on a bad down-day.
Thanks for your help guys!
Mary
Being new to "autism", I am not sure what I would say either. I think others just don't know what to say. When my brother passed away at the age of 43 and left behind a widow and 3 young children, people kept saying "he's in a better place". Sure didn't make us feel any better! People feel the need to have to say something.
I do know how you feel. Sometime I feel like DS is "normal" and making progress then when he "zones out" or starts "scripting" I just die alittle inside. I cry too when I know other children his age are starting soccer or t-ball and ds can't even peddle a bike. I cry. Then out of the blue he will say mornin mommy or love you and I squeeze him and thank God for my little boy.
I think we should think of ourselves as special. Not everyone is as lucky as us to appreciate the little things in life. Special but human beings with emotions and feelings just like other Moms.
I am so glad I have this board and all of you. Vent, venting is good.
Hi TheMary! Don't EVER feel like You are alone! I hear the same thing .."God only gives us what we can handle" "You are a special Mom who is very strong yadda yadda yadda. Now that I am on Lexapro, I don't cry as often. I just look at AJ and KNOW he needs me. It takes a LOT of patience and time. AJ still does not speak...only me and my hubby actually KNOW what he is saying. I, too, watch other children with their Mom's and sometimes I feel envious. I don't always think I can continue doing this, either. However THEY NEED US! Keep strong, and always, Always Keep the Faith! We are ALL in this together.
I wrote a post a few weeks ago basically verbalizing exactly what you
did, themary. I have a VERY hard time handling it when I see
other little cuties with their mommies, walking along and chatting
away, pointing out things they find interesting, asking all sorts of
questions, etc. I usually cry when I see those thing (though I'm
able to make it into somewhere private before the tears start,
luckily!). I don't want to be the kind of person to begrudge
anyone their NT child, though I find sometimes that I am so jealous of
those mothers. How very un-Christian of me. I always run into the really obnoxious normal kids. And what helps me is thinking "well that kid is normal and look how bad he/she is behaving. At least mine have an excuse." And you know when I see these normal kids like that, mine are so well behaved. I know the last time I saw a normal kid acting up, on the way home Jeffrey commented about how loud that kid was. So even he noticed the "normal" kid was too loud, lol. Tammy Hi Mary. I'm sorry you are feeling disappointed. I have those moments too where I think about how my son would be without this disorder, esp when I see other kids walking and talking with their parents. I just cry. Then it seems after I'm over feeling sad I go for a stretch of feeling hopeful and so proud of him. He is just a little trooper who has already overcome so much already but has so far to go. One thought that seems to help me is that my son is not going to be so "different" after all. With so many kids having autism, my son certainly isn't going to be alone in his struggles and society will have no choice but to learn, deal, and accept those with autism for who they are. "God only gives us what we can handle..." BLAH, BLAH, BLAH.....do you know how many freakin' times I've heard this? Honestly, it ticks me off when people say this and I don't know why. It just does. I hope you feel better soon. It's great that Anna has already made so much progress.
I know exactly how you feel. If one more person says to me "God only gives us what we can handle..." and "you are such a strong person,you can handle this..." I will scream. I don't feel strong. As a matter of fact, I have fibromyalgia which is severely limiting, I can't see out of my left eye (and the right one seems to be getting weaker), and I have absolutely NO immune system. Now my darling boy has been diagnosed with ASD. I am trying to stay positive, but I know the disappointment you feel. Hang in there and just take it day by day, and remember how blessed you are to have your beautiful Anna with all of her special gifts which she has yet to show you! Kay
now i find that my 7 year old seems more severe than i had imagined. where the hell have i been??? what happened to my kids? ugh, that's what we are here for..love sweat and tears and a joke now and then. vent when you need to . i am always here and i know a lot of other wonderful people are her with great feedback when you need it, a shoulder or a kick in the pants. kate My "favourite" line? "My son did not talk until he was 4...yours will be doing the same!" (although the "Special kids to special people" bit is also up there) My "favourite" people? The ones that have seen the movie "Rain Man" and now think they are experts in Autism.... My favourite time of day? Waking up Nicky in the morning with his hair disheveled and the mark of his pillow on his cheek... he smells so good and he is so warm! Hang in there themary; they are just trying to be reassuring... they probably don't know how to handle a situation like this. For the progress / regress issue, I was told by Nicky's specialist that is is normal... their brain can only process so much at the same time. Look at it more like two steps ahead, one step back. Take care, Jo. 1st let me say Anna has made progress w/speech and everyone tells me how wonderful she is doing. With that said...why do I not feel that? Every single time we go to get into the car it takes me constantly telling her to "come on". She will stop and stand looking at something tune out everything else. Now, I know that is normal for kids to stop and do their thing but every single time? It is all day and is worse than before. I feel like we had made progress but now I feel like she is slipping backward or sideways....or should I say just slipping away from me. NO one else seems to see it but me and my husband. I am hoping that her new teacher will start to see Anna for who she is after she has spent some 'real' time w/her. If you meet Anna and spend 15 minutes with her you would think "oh, that is typical of most children" but i spend all day w/her and as the day goes on the 'tuned out' anna gets worse and worse. The worse thing is my gut feeling tells me she isn't 'going to be ok' and I still have people feeding me that line. I wan't to belive that Anna will catch up and grow out of this (as all of you no doubt feel as well) but part of me just nags at my soul saying "wake up". Her next eval is in November and we are getting ready to change her IEP (still waiting for the meeting). I can adress these issues then but right now I just feel emptied. I just dropped Anna off at her special preschool. And there isn't any doubt that she has issues but if I hear one more person tell me..."she will catch up", "she is talking now, she'll be fine", "oh, you just fret to much" . I will scream! THis is what I hate most to hear "God gives special people kids w/special needs" ok I am not special...matter of fact, I think most of the time I don't feel epquiped to handle this. And, I know she could be worse and I know there are people with children who are severe autism or CP but everytime I have to help Anna up the steps and snap my fingers in front of her face part of me dies inside. With all this said....I have no idea what I am asking everyone here but maybe some of you could just tell me how it is that you cope w/disapointment? And thanks for your ears/eyes and invisible shoulders. mary 
Luke, too, often stops while we're walking thru parking lots. He
is fascinated by moving vehicles. I wonder if maybe someday he'll
be an auto mechanic. It'd be nice to have one of those in the
family! 
I guess that's how I best cope with my disappointments: I try to
see something good from this awful situation. I try to focus on
Luke's strengths (which is incredibly easy when he's having a good week
[like this week], and unbelievably difficult when he's having a bad
week [like 2 weeks ago]).
Glad you're feeling a bit better, themary. It's wonderful that we have each other on this forum.
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