Need some encouragment | Autism PDD

Dear Sally,

I'm sorry this has really been a blow to you ... and I'm sure we can all relate. It's really good that you'll be speaking with a therapist and I'm glad you found this site as well. :) Luke was dx'd about 3 months ago and occasionally I feel like I'm on an emotional rollercoaster. For example, today we were at the playground. All Luke wants to do is swing. He swang for about 25 mins. I was glad I had my sunglasses on be/c I had tears in my eyes watching all the little children running from one piece of equipment to another and playing together -- a group of young boys pretending that one item was a space ship, another group playing tag. I couldn't help but wonder if MY son would ever be running with his friends, pretending and playing. *sigh* Know how I cheered myself? By remembering how Luke, when running to the playground, stopped dead in his tracks when we reached a couple of young children, looked at them, and smiled!!! I was thrilled! About 3 months ago, all he would do is run around them, completely ignoring them. So now he's looking at children and actually smiling. Baby steps. We have to be happy for the little steps forward in progress ... even dwell on the little steps of progress ... and try not to think too much about the negative behaviors. Those steps forward are what matter most.

Good luck, sally. And God bless you and your family. things WILL get better.
Hi again Sally!

I must admit I do not have the energy to fight my kids on the bed issue.    Our youngest is a real momma's boy and must sleep in our room.    He is 6 and has spent only 1 or 2 nights sleeping in another room.   and then there is Jacob 8,   who wil only sleep in his room when his cousins are sleeping in there also,,,,5 nights per week......unless there is a cloud in the sky and a possibility that it may storm.......then he too is in my room either on the floor or in our bed.     I have given in!!!!!!    It is the only way to get any amount of sleep at all!    It is not always comfortable.....I have sometimes snuck away to sleep on the couch, but whatever it takes to make it peaceful and catch some zzzzz!!!!!

I too feel most people do not understand what our days are like.    That is why it is so relaxing for me to be around other families who have kids on the spectrum!    When we are together we can relax and don't have to be worried about how our kids are acting.....the others understand cuz their kids have similar issues.     Yesterday I drove 5 hours to take my family to an autism awareness day in a state park.     Even though these families are so far away it is nice to know they understand and we are not alone!    If 1 in every 166 kids has ASD there is bound to be another family in your area!    Put out some feelers.....ask your ST, PT. OT, if they will give your name and phone number to any other families they serve who also have similar issues.    Sometimes it maynot even be ASD but some other disability.......families with disabilities can be very understanding and supportive....you may be helping them overcome their feelings of isolation as well.

Hang in there!!!!!    it can get better!      I hope you are getting some sleep tonight!    I can hear my DH sawing logs and there isn't a kid in my spot tonight (WOOHOO!!!!)   so I may sleep comfortably!!

good night!    bonnie

I know I have felt this way a million times over the last 20 months or so since my ds was diagnoised.Thankfully about that time a wonderful family moved into our community that have an older son with aspergers . They have been so kind to us and encouraging to me as I deal with my son on a daily basis.They are my inspiration that it can get better with time . I hope that as I go further a long this wild roller coaster ride that autism has put me on that I can be as supportive to others dealing with it as this family has been to me.

I hope that you can find a family and friends like this family either by chance ,like I have, or by finding an autism family group that meets on a regular basis.Having the companionship and compassion of others helps so much.

Thanks everyone for all your kind words and support. I am having a rough time of it right now (it doesn't help that dd has decided to cry and scream through the night and refuse to go to bed and try to get into mommy's bed all night long for the past 4 days). I think I am in the post-diagnosis aftermath, feelings lots of emotions, doing a little grieving maybe. I just have to have faith that it will get better and that all I can do (besides getting my dd whatever therapies/services she might benefit from) is love her. It's sad and frustrating sometimes, but that's really all I can do in the end....that, and try to take it one day at a time. I'm so grateful to be able to turn to you all here - thank you so much!!sallys38565.612662037

I am so sorry for how you feel right now sally. My heart aches after reading what you wrote. I wish I could give you a real hug but here's the best I can do:

As you know my ds isn't dx'd yet. We are waiting for an appt in Sept. So I don't know if I have the right to post on here sometimes because ds may not have anything. I don't know. But I guess even if not I can still relate. Because I am confused on my son's behaviors every day. And like Kellie said above, I've felt that sadness when watching other children.

Here we have a Storybook Island. It's a free park running off of donations and it's pretty big. It has a whole bunch of storybook characters, playground equipment, ponds w/ fountains, castles, etc. When I go there with dd and ds, dd wants to run around and look at things and play on stuff. ALL ds wants to do is run towards the nearest water source (he LOVES water) and he picks up rocks, throws them in the water, and when they splash he makes this monotone "OOHHHH" sound. He says "oh" but it's drawn out a little. And he will stand at the fence by the water and pick up rocks and throw them the whole time. I cannot hardly get him to move. He tantrums when I drag (yes I'm guilty of having to drag him sometimes :-( ) him away. I have a visit to the park on tape from earlier this mth because I wanted to video the kids playing there. And on the tape I keep having to say to poor dd, "we can't go over there because ds won't come w/ us and we can't leave him by himself. I'm sorry honey I'll take you by yourself next time so you can play more." Luckily she is really smart and has a pretty good understanding of the situation. But I KNOW it is hard on her. And I can only let her play in eyesight because I have to stay w/ ds while he does his water thing. Sometimes I can get him to get move if I show him another place w/ water in a diff area. Then he'll run over to it and that way we at least are at another part of the park.

Anyhow I'm rambling on in my own thoughts. I love who ds is no matter what. And I really wouldn't change him because I adore his personality and find most of his quirkiness endearing. But it can be hard and even heartbreaking at times when you see how different he really can be from others. I'm glad you found this site sally. It is so supportive and it sounds like you really need that right now. I'm sure, as the others have said, that it will improve and get easier as time goes on and she gets older. I'll pray you feel better soon.

Amber

Sweetheart, it does get easier. There are stilldays when I cry because something went wrong. Benjamin is almost 7 (Sept. 11), and he has learnedso much from all of the hard work. You will begin to have "wow!" moments and even days. Today was hard for us because I could not control all of the variables. But we made it and now he is bathing, drying off, and getting dressed. I check periodicly to make sure that the little guy didn't fall asleep in the water or empty the water from the tub onto the floor

I mostly feel so isolated from everyone I know. Nobody understands what this is like on a day to day basis. I just got home from having to leave the bookstore with my dd because I had to go to the bathroom. She is absolutely terrified of public bathrooms and started having a complete meltdown (complete with screaming and hitting) at just the mention that I had to go (I'm not even trying to make HER go at all, she is still in pull ups).

WHO (besides you here) can understand the strain of having to face things like that all day, every day. Or, the language issues, always working on her language and striving so hard for her to say the simplest things that other kids just learn on the go (all the mixed pronouns, garbled sentences, nonsensical comments). Then there's the reciting and the rote responses. She is so predictable in what she is going to say because everything has associations (for example, everytime we're in the bathroom at home, she'll say "that's daddy's mouthwash. Dentist give it to you" because that's what was said to her one time months and months ago.I hear it everyday, over and over!). Nobody in my life GETS that part. It's all so relentless, there is no let up from the stress, fear and worry.

I hate feeling sorry for myself because it is HER I need to be focused on. It's her that this is happening to, NOT me. Right now, I just feel so overwhelmed and scared. Who knows what the future will bring. I don't have anyone besides my husband "on my side". He helps a lot but he can't do it all! I feel like everyone is telling me things will be okay or it's not so bad or it's not really pdd or any number of things except supportive and kind things ( I even had a family member say today that the pdd symptoms won't last, like it's just a phase!). I hate that I care so much what others think and that it bothers me that people don't get it. I mean who cares if they don't?? I do for some reason.

See, I don't really know what I'm trying to say, except how do you all deal with it all day in and day out. You all seem so strong and like you have the right perspectives and all your focus is on your child. I feel like such a weak, ineffectual mother. I am not full of infinitite patience and care, I hardly ever know the "right" thing to do and I always question whether I'm doing enough and always think NO I'm NOT. I mean, I'm not even with my dd right now, I'm off writing this while she's watching a video. And yet, I so need the time "off". ...I think I'm having post diagnosis breakdown or something

Nita

((((Sally)))))

I agree w/ Nita, Nicholas will just talk in Elmoisms all day somedays and I'm like how about your other words? Is he getting it? is this how its going to be forever?

And you know what I also agree w/ Nita (she's good LOL) because my son has gotten so much better from 3 to 4 1/2, AND you're daughter seems to do so much more than my guy did at her age and I just think give it time, and you'll be really suprised at how a few years can change things...not saying all will poof go back to normal, but they do get more independent, they do realize that Elmo phrases are not going to get him to go outside...but telling mommy go out! will...I mean omg he just potty trained himself in the last week!!! I wasn't even trying it and bam, the little bugger surprized me...things just are at a slower pace w/ our kids and even if things don't turn out the exact way we'd hope, they still progress in ways! ; )

Hey I've had my share, and still do, or days and moments like that...its so normal to feel that way, you're just showing how much of a good mom and a loving mom you are, you care enough to let it bother you and feel overwhelmed because it is!...that's all...its great to go to talk w/ someone, I really need to myself, but time is not my friend these days LOL...so I wish you much luck w/ it and please anytime you feel like this talk to us, we are here for you hon!

hugs and shoulder to lean on if you need it!

Ali

nicksmomluvshim38562.6555555556

o thank God, I am NOT alone! AND I have been trying to tell my family for 4 years, either my milk was rotten or my eggs were spoiled but something is wrong with keith. all i got from everyone was that i expected too much from him, he was a normal child and i was used to advanced children..... yeah, i fee rotten for not having insisted at9 months, when he was climbing out of the crib, that something needed attention! thanks for sharing you story, venting sometimes helps others too.

kate

Hugs Sally.

I've been there too. I have two with Autism, 13 and 6. Even now things happen that make me cry but it does get easier. They do progress. My 13 yo son couldn't even ask for things without a prompt and now goes to a normal school and can tell his mother to get lost (which he does often). I used to pray that he would learn to talk. There a days that I was sorry I did. His issues have changed and I know how lucky I am that he is now high functioning.

It has been nearly 11 years since dx but sometimes I find it hard to remeber how bad it was. One day not long after the first dx, when I had just had my second child (he is adhd and 10) I remember seeing a truck coming down the road and thinking all I had to do was drive into it and it would all be over. Luckily the children were in the car and I couldn't do it to them.

It sometimes seems that you can never do enough. You want to do the best for your child but you just don't have the energy and you are just so overwhelmed. In the end I just focused on doing what I could each day, realising that I would improve as I became more used to what I needed to do. I rejoiced in the little steps. I joined a support group where other mums who had been there before could guide me and support me. And I gave myself a break. We can't do it all. Even a trained professional would find it hard to do what we do. I learned from others, took on board what I could manage and kept looking for the good in each day.

We have all been there, it's okay to feel like that. Thank goodness that you are getting some help. Hugs and love to you Sally. Hang in there.

Wow, thanks so much for all the replies and empathy. I'm glad to hear that I'm not alone and that things do get better.

Cheryl, I was really struck by what you said about looking for the good in each day. It made me realize that I tend to OVERLOOK the good in each day and make myself feel worse and maybe see my dd as a little worse off than she really is. It doesn't take looking to see a lot of progress and good in every day and that is something to be grateful for and hold on to. Thank you for helping me refocus!

Hi.

Glad to know that you are feeling a whole lot better from the first post on this discussion.

But anyhow, I hope some of these thoughts can also help in case there will be other "bad" days for you.

Your emotions from the last is you being human. Its not only when you have to deal with ASDs that will make you feel the way you felt. We all come across days when we feel things just aint right for now, but what is good about it is IT WILL PASS. Even the happiest people on earth now will tell you that at one point in their lives it was just not the "right" time.

Hang in there, you are doing great. There will be even worst days where patience is tried to its over extended limit. When society will even be more dictating. When life just isn't a friend. Hang in there, because your wonderful gift needs a super mom like you.

Take care.