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Grieving the news since this Friday!!! please help me!!!

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 I knew about a year ago, something was wrong with my baby boy, but i kept thinking to myself" It's just me, i"m the one who's being paraniod. And so did family members. Now we have the final diagnosis of him being PDD/NOS on the spectrum of Autism.  On Friday Morning. My heart got ripped out of my chest!!!

 It's been 4 days, and my eyes hurt from all the crying. My anger is towards everyone in my family, and i think i'm going a little crazy! How do i deal with this. I know i'm pushing every button starting today, with the support groups. But ladies, and friends, i need help NOW!!! I need to know how to deal with this properly.  I am one strong person, but right now i have no angels holding me up!

Today is  new day, a new week. I will be strong for my family, and not to try and think so negative. He will qualify for SSI and Medicaid, so that is wonderful. He just deserves a good life, and don't know if he will ever get it  with how severe it is. It breaks my heart to here all the stuff the doctor said, but it was like he knew him from the" T" for that i am grateful.Everything he said about colton was an open book!!

I'm just a mother doing the best she can, with the help out there given. Thank you for letting me VENT!!! i needed this. Today is a new day, a new week, and there is hope for my little man, i am just grieving, and it's sooooo god dammmm hard.....

by on Oct. 1, 2012 at 9:45 AM
Replies (11-20):
by on Oct. 1, 2012 at 3:03 PM

I totally know how you feel we come to expect so much from our children we forget to ask are they happy or the best they can be TODAY take it one day at a time you are in your every right to grieve but remember he is still your buddy he will just view the world a little differently and learn differently help him as much as you can and the family that is not helpful avoid them as much as you can cause they don't know what you know or are slowly learning and you need love patience and acceptance not judgmental people message me anytime hun I feel for you and your kiddo...

by on Oct. 1, 2012 at 5:16 PM

Hugs mama, you can get through this. He has always been the same child, or his "normal" to you. This doesn't make him any different. All thats different is a way of seeing things through his eyes and being able to let him grow and be the best person he can be. You will get frustrated at times, cry at times, be angry, you will feel every emotion possible. Just remember you are not alone, and there is always someone to help you. There are people that share your feelings. Hang in there, it will get better.

by on Oct. 1, 2012 at 5:22 PM
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It may not seem like it but it does get better. My dd was diagnosed PDD/NOS 5 years ago. Back then I didn't think she had a chance at functioning on her own. We went from being told by school specialists that she would never read, would never function in a gen ed classroom and that she would always have to have a 1 to 1 coordinator. She is reading well, writing better than some of the middle schoolers in gen ed, and is showing great potential. She has even started taking intiative of cleaning her room and helping her younger sibs clean up. Did she pass the state standards test? No, but she only missed in a couple areas by 1 or 2 points. Thats a huge improvement over what we were intially told. The best advice i can offer you is give yourself time to grieve. Your child is still the same child but some of those hopes/dreams for your child have to change. It is okay to grieve those lost dreams. Next best advice I ever got was don;t  get caught up in the blame game or the guilt trap. it's not your fault, it's not your families fault. You have been given the opportunity to become an amazing teacher. Sure it's hard work but when you start seeing the rewards of your work you will be filled with so much joy. After 5 years I still have moments where I grieve and it's okay. I know a lady whose child was diagnosed 14 years ago, he just graduated highschool last year. She still has moments where she grieves.

by on Oct. 1, 2012 at 5:53 PM

I understand the sense of grief; most of the time I just think of our son as being "Thomas", but sometimes I catch myself wondering what he would be like without autism (I don't allow that to happen very often).

I hope that you have a good support system; I don't know what I would do without my husband. Our families don't seem to have a clue.

by on Oct. 1, 2012 at 5:59 PM
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Hugs, mama. This doesn't mean your little one will accomplish less, or be less. It just means you take a different road than you had planned to get there.
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by on Oct. 1, 2012 at 6:41 PM

((HUGS)) and welcome.  You are part of a great group here...grieving is part of the process but with time it does it better.  Remember you are the best advocate for your child.  Love him and enjoy him.  My son is 13 years old diagnosed with Autism at age 8.  In five years we have made huge gains one baby step at a time...

by Silver Member on Oct. 2, 2012 at 7:16 AM

Stay strong, but remember it's okay to cry. 

When I got the diagnosis of autism for my son, I wasn't surprised. It still hurt like hell. I didn't want my son labeled. I didn't want that negative stigma on my son. Then I realized that my son is wonderful. Has been and always will be. In my eyes.

The diagnosis just means that now my son can get the help he needs. It has also allowed us to get the help we need in order to make sure that what we are doing for him is what he needs and will help him. 

I have something from a pamphlet that I will retype in here. I will give credit to the person that wrote it. 

I don't know if it will help you, but after the tears dried up, it helped me a little bit. 

Here it is: 

Welcome to Holland. by: Emily Perl Kingsley 1987

I am often asked to describe the experiences of raising a child with a diability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's liike this..

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean Holland?? I signed up for Italy! I'm suposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, fitlthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books And you must learn  a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is buys coming and going from Italy. .. and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very  significant loss.

But ...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

by on Oct. 2, 2012 at 7:22 AM
Your Anger comes from the feeling that no one believed you. And their denial comes from wanting your baby to be perfectly healthy. ASD does not look like anything do its harder to see and you may still have people who won't believe.
Just remember your baby is the same baby as yesterday. You will grieve for a while and that's ok. But eventually you will come to realize you finally have answers to all those question. Why is my child behaving this way? Once you know you are able to help. Even if is avoiding a situation that can cause meltdowns. Good Luck and make sure you find support for YOU as well as helping your child. Sometimes we forget ourselves.
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by on Oct. 2, 2012 at 7:28 AM
I know how you feel. I've got one that has only an educational diagnosis of aspergers. Even that killed me. Now dd is suspected to have sensory processing disorder and autusm.
It's hard. And it's ok tO hurt and cry. Stuff like this changes your life. Find someone to talk to. Get a journal. Start a blog. Do something to air out so you're not holding it in. It does get better.
Ds got his educational diagnosis 2 years ago. There are still days that I cry when I see him struggle or watch other kids his age do things he can't. But, it will get better. Keep your head up and stay strong
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by Terri on Oct. 2, 2012 at 7:46 AM

hugsI totally agree this is all new,It takes time to process,you are his Mom/his is your child,There will be really bad days,not so bad days,And the milestones will be priceless,Just ask any of these girls,and you will grow/learn w/him.Above all else just keep your faith,remember you are his Mom.that will never ever change.

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