Sallys........... Im so sorry its hitting you hard and you are feeling down. Even a parent who is totally prepared for an ASD diagnosis can feel down at some point. Its normal.
Tyler was diagnosed 7 years ago. While he has made great progress, he still has troubles. Living with him daily, and having it all be a part of our daily life routine I sometimes hardly notice UNTIL I see other kids his age or go on a school field trip with him and then I see just how far behind he is. That hurts. But I look back... not foward. I see how far he has already come instead of how far he has yet to go and it gives me strength to keep going and trying and fighting with him and for him.
Those blue days after 7 years still come and go. I still cry wishing certain things could be for him But I love him as he is with all my heart. He has taught me SO much in life already - Things I never would have learned without him. Hand me a pill that would CURE him 100% GUARANTEE TO CURE HIM WITH ABSOLUTELY NO SIDE EFFECTS,.......... would I give it to him? NOPE! As much as I would love to take his struggles away; he is who he is, and if I took the autism characteristics away he wouldn't be the same sweet innocent loving boy he is today. I hold onto that when I feel down and feel thankful to have him at all, as there are many moms out there who kids are missing or have passed on, I love him with all I have and just a hug, or a look is enough to keep me going for him!
Now that dd has been dxed with pdd-nos and I no longer have to worry about behavior or try to make an excuse for it, everything seems just so glaringly obvious. Maybe that's because I know all the signs and symptoms or maybe because it was so obvious to the neuro when I thought it was grayer or maybe just having a little more objectivity because there is a name to it. I thought she was "passing for normal" but really I was just in denial.
I'm not saying it colors all she is or that it defines her or that I explain every behavior through the pdd lens. But still, I guess I'm more aware of what's "lacking". Her grandmother and great aunt are visiting and while she's not as scared of them as she would have been in the past, it's very clear she is off in her own world a lot and not talking/interacting, especially compared to her 2 year old's cousin who is NT and they visited before us. They keep talking about all the things my niece said or did and it hurts because my dd doesn't talk or interact like that. And that must be obvious to them as well - that dd is not interacting or talking at a 3 or even 2 year old level.
Then we had more people over for a bbq and she just wasn't making any sense. She was also very distressed because I am sick and that was rocking her world. This morning she wanted me to be up and normal and not sick but she didn't SAY anything just tried to snuggle me or get me off the bed or get distraught. I was really struck by how little she really talks - it gets lost in the recitations, singing and rote responses. I mean she does talk a lot, she doesn't say much though , if that makes sense.
I guess I feel like the blinders are off and since I know what I'm dealing with now, it does seem obvious. I know she is mild and high functioning and I try to be grateful for that, but today I just feel sad because while she is all that, she is not NT. I feel sad for her. I feel sad for me. I feel sad for DH. I feel sad for what will become of her. I'm surprised that this is hitting me now because she was dxed a week ago and I felt relief, if anything, then. I just feel the loss for what should have been (for her, not me), even though I know her future is bright. I guess it's just sunk in a little deeper. Is this a fairly typical reaction to the dx? I guess it's always going to be a mixed-bag of emotions. Thanks for listening. Sorry if I sound whiny, I don't mean to feel sorry for myself. It's more that I feel sad and a heartache for dd.
I can relate. This past weekend,
DH and I were eating lunch out together and in a booth next to us was a
toddler who was chattering away with his Mom. It amazed me to
hear how well he was speaking. It took every ounce of strength in
me to keep the tears back be/c all I could think of was how much I'd
give to hear Luke talking that way. *sigh* We've been
dealing with Luke's dx for just about 6 weeks now, but I still have
pangs of despair -- not knowing what the future holds for my son,
grieving the loss of what my dream for his childhood was, etc.
On Friday last week someone posted "Welcome to Holland," a sort of
inspiring little snippet about what it's like to be the mother of a
child with a disability. Maybe reading that would give you a
little comfort?
You're definitely not alone in your feelings, dear. Hope you're feeling better soon.
Kellie
u are deffinatley not alone even though it gets easier in ur mind over the years i still sometimes feel sad . i feel sad at who they might have been and i also get sad in a jealous way of my friends and family who moan about their kids but dont have the same worries if u know what i mean. i think that it is like grieving sometimes and u should do it even if it is in private as u may need a moment . i hope u feel a liitle better soon take care and remeber we are here xxxxxxwelcome to my world. I feel like that more often than not now. I dont even have a really formal diagnosis but I just see the stark difference between him and his peers and it breaks my heart. I also get so heartbroken when he cant express what he wants or why he is sad or frustrated. I get so upset. Be sad as long as you want I believe we will always be a little sad but with time I hope we learn to accept it and rejoice in what we canYou are certainly not alone. DS was diagnosed in September and I still
feel that way. It's not as intense and not as often but I don't think
that sense of loss will ever go away. We are allowed to mourn- I mourn
the child that used to look me in the eye, I mourn the childhood I
thought he would have, I mourn the second child that now I will
never have, I mourn the life that I dreamed about.
I get jealous all the time too. I try not too- but many people I know
had children the same time that DS was born. It seems that everyone is
just going about their lives with their healthy children. Many now have
2 children and I'm stuck in this nightmare world- full of IFSP's, ST,
OT, ABA and GFCF diet.
I think what I need to do is stop thinking about the future- I know,
easier said than done. But if I always think about what I don't have,
I'll miss out on what I do have. Just this past Saturday DS had a
great day. His cousin was visiting from out of town and he was playing
soccer outside with DH and his cousin. He was chasing them around the
yard.- laughing and making great eye contact.
Anyway, mourn if you need to but don't forget to "stop and smell the roses".
Take care.
I am here with you too. We got the dx pdd-nos at the end of april. I think it comes in waves. I did a tone of autism checklist before and it hit me one night when they all said yes. So I felt prepared to get pdd-nos. Its very depressing. Feels like someone through me down a well one day and now its dark and I cant see to get out. But I am climbing as fast and as hard as I can.
I dont feel its fair I have to fight this battle, but I am going to and everyone in my way better watch out. I am fighting real real hard to find the best preschool placement for my son (3). They want to put him in a disability preschool. And its free. But I want my college daycare. But its expensive. I have no idea what will happen.
Please just read the board daily. This place helps me in every situation. The search tool has really helped too! Especially for IEP. Any time you have a new worry or idea just post it, I am 100% sure someone else will have the same worry, or have already dealt with it.
REMEMBER no one took your child. She is not the dx...she is your child that has pdd. Just like I am Ginger I have asthma..not I am an asthmatic named Ginger. My son is Corbin..high energy so loving, and I promise the cutest boy I have ever seen ( I will enter any contest with anyone just dare me) he also has epilepsy and pdd. <not my son is autistic, seizure, and named Corbin> Its confusing but I know what I mean
Last night he woke up in middle of night just screaming. He would not be consoled. I tried pacifier, water, changing his diaper, I picked him up and he just kicked and hit at me. I even brought him into the liv room and turned on cartoons and sat him on the couch and he still was kicking and screaming. His eyes were open and he was awake but so mad. I felt so helpless not knowing what was wrong. Was it a nightmare? Sensory prob? I had no clue! Don't feel alone. I think it's always going to be a bit of a roller coaster off and on. Luckily we have this board of support. Amber *smiles and gives big hugs to Michelle while i sit and cry* As i sat here and read sallys post i started to cry because... I have only had Zach official DX of classic autism for 2 weeks.... but as many of you know, I've/We've known for months He was probably on the Spectrum.... but.... As Michelle said... I hardly EVER notice things with Zach.... UNTILL.... untill another child who is his age... or sometimes even younger is around and I see what they are doing that He isn't. It is in those moments it takes as kellie said... everything I have not to break down and be hystarical. To me Zach is normal. He is who God created him to be and for a reason. And even when I see other childeren I tell myself this. Being a freaky christian woman, I have believed since I was pregnant that Zach has a calling over his life. And not just a he will be successful and have a family calling... One that will bring joy and happiness to many peoples lives. It is something that has been in my heart since the day I found I was pregnant with him and therefore I believe it was placed there by God. When all of this started with Zach.... and his Dr. said ASD.... I sat in my car.... and for the first time in my christian life... questioned God..... and I mean really questioned. Not a good place for me to be spiritually I will tell you. I sat in the car and cried and screamed disparringly into the air ... WHY.... I don't understand.... YOU said He would do great things.... YOU told me that... (*laughs as I see moms sitting there shaking thier head at my craziness*.... but this is how my relationship with God works *laughs*) And as I sat there and broke down....*smiles* I believe God whispered an answer into my heart.... Zach WILL do great things and Zach Does have a great calling on his life..... IN SPITE of his struggles and difficulties.... He will do wonderful things BECAUSE not without ASD. I really believe that to be true about all of our childeren.... during this time of great research and influx of information and awareness.... they will be the proof to the world that Science isn't always right... and things aren't always what they seem. Do I deny that Zach will struggle??? Nope.... Do I deny that Zach will look different to the outside world??? Nope.... But guess what??? Jesus was and still is one of the most Loved and Hated at the same time person in the world. Did he struggle... yes.... was he different to the outside world.... yes. *shrugs* I don't think it's so bad for my kid to have a few things in common with Jesus. My oldest son had night terrors for years. It was a very scary thing and very sad too. He would appear to be awake and would walk around and even talk but was sleeping. What made it scary was that he would scream and throw things (big items) at something that was not in the room...only in his dream. We would find him in all different places in the house too. We had to make sure that we had locks on the doors that were too high for him to reach so that he wouldn't go outside. He would always wake us up with his screaming and yelling at someone that wasn't there. In the morning he would have no memory of ever being awake or that he had a nighmare. He finally stopped when he was about 9 years old. Karrie I get hit by that emotional roller coaster still after a yr. Like when his 3 yr old friend surpasses my 6 yr old son in counting, basic info like where you live, etc. It hit again when my son failed minnows for the 4 or 5 time (I stopped counting) and he is by far the oldest child.. the rest are toddlers. Or how the school might say he can't go into grade one. I don't think the sadness ever really goes away. You just learn to celebrate teh good more. But some things will always hit you and make you sad because there will always be struggles and reminders. On the flip side, I appreciate soooo much more. I don't take for granted the little things. I can see the world in a much more understanding light. You know I thought of night terrors. Maybe it was that. I just still wish he could communicate w/ me. I hate guessing what he wants or is upset about. And Zach'smom...that was a great post! I think that's a great way to think and I couldn't agree more. Amber Wow! I really know how you are feeling I went threw the same emotions. I still do sometimes. I have a 7yr old nephew that is compared to jared. and he is 18 mos younger. and way ahead of his age. so it is like 2 extremes. But you know in the last five years since Jared dx. I think of how things could be or should be. But the truth is I cant imagine Jared any different. Jared did not talk at first either of the dx. Now even though you cant understand him sometimes or he scrambles what he is saying. He basically dont ever be quiet. EVERY child is unique. and can bring to your life something that no one else can. So just enjoy your daughter for who she is, and even though it is difficult. try not to compare to the same age. For your own sanity. AS much as I love my nephew I feel my sister has a Harder road ahead of her that I do. Because her kid is no intelligent that he acts up alot and always wants to argue and that is a 7yr. old, imagine in a few years. lol.....well I hope this helped. Leslie Leslie, I know about gifted children. I also have a nephew that is PROFOUNDLY GIFTED. OH he is something else alright. His IQ is in the 140's and he is now 11 years old. He has gotten easier to deal with since he has gotten older but when he was younger he was very unmanagable. He had this "i'm disgusted with you because you are not as smart as me" attitude. He has had to learn social correctness through the years and he had sensory issues when he was younger. He was evaluated when younger and was not on the spectrum but he has a lot of aspergers qualities. He has surpassed all of us already as far as "book smarts" goes. He has already recieved high school credits for when he starts high school and when he gets to high school they will start him on college credits but still keep him with his peers. I'm very proud of the social changes he has made through the years. Don't get me wrong...he is still what you would call an "odd child" but he is learning to better fit in now. After all he is just 11 years old and no matter how intelligent you are.....some things do not change. Emotionally he is 11. I know this thread has nothing to do with my nephew but i seen that you mentioned yours so I wanted to add my thoughts because even in the other extreme my sister had a lot to deal with just like i do now as far as behavior goes. Karrie
It will take time and it may not be easy but it will happen if you work
at it with her! We all have our sad days, but don't let
them stop your progress. Cry if you feel like it....let it
all out.....get some sleep and start fresh the next day!
Don't let negative people get in your way! Stay positive
and surround yourself with others who are positive your daughter can
succeed and she will!
So here is my big hug and a soothing back rub (wouldn't that be
nice?) Relax take a deep breath and start each new day with
the conviction that she will make progress! God
bless! bonnie
or that or he won't ever do this. I cried becuase he wasn't normal and
wouldn't play or talk like other kids. I worried if he would ever say more
then the 80 words he did, I worried if he would ever play and I felt
creeped out when he lined up his toys. It's been nearly 2 years now and
while I still will have those days (especially when Lou's having a bad day) I
have them far far less often.
Lately I see how far he's come. Recently we saw friends who haven't seen
him in a year and they couldn't believe this was the same child. Thanks
to all the help we got from his speech therepist and figuring out ways to
communicate things to him he's gone from an angry frustrated child to an
over all happy one.
Also I read somewhere that Autistic parents are in some way lucky. They
will have a closer relationship to their child in some ways. Why? Because
we will celebrate and be proud of every little thing our child does. We will
not take for granted the new word or their interaction with another
person. We have far more milestones that we are proud of. For example
my son was with his father the other weekend (I got this story from his
dad) and they were going up to his apartment when another person
entered the elevator with them. My son without skipping a beat looked
at them and asked them what number. he loves pressing the elevator
buttons and pushed the persons floor for them. To me and his father this
was a big deal as he asked a very appropriate question and didn't freak
out at the stranger in the elevator with him and his daddy. Many parents
would overlook this incident not us because for once my son interacted
with a person he didn't know even for a few moments.
Would I make him "normal" if I could? At first I would have said yes but
now I say Lou is normal. He's normal for him and if other people don't
like it or can't deal with him they can leave and I feel sad for them
because they won't know what a great kid he is.
Try not to think of what your dd can't do or won't do. As I know that
there were a lot of things that Lou does now that I thought he wouldn't.
Encourage her whenever possible and be proud of what she does do and
what she can do. Look for ways to interact with her in ways she
understands and don't let her get away with anything she wants just
because she's autistic. Some things can't be helped but others can so
don't give up on her. Hang in there it does get better.
Kim
Mom of Lucian 4yr old pdd/autistic Amber ...
Do you think Aiden could have been having a night terror? I've
read that the child looks like he's awake, but is not. Luke has
had a few of these (precious few, thank goodness) and it scares the
be-jesus out of me every time. :/
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