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.....
I remember when i received the ds my son was PDD-NOS. It was as if my heart had been ripped right from my chest. I hurt so bad that I thought the pain would never go away. My ds doctor told me that it was not unusual to feel that way. He asked if I needed a therapist for myself. Someone that I could talk to about how I was feeling about everything. I told him that I did has someone to talk to. I would recommend you getting one. We sometimes forget about us in all this. We need to be able to help our child so that means also helping ourselves. Wish you the best of luck.
Oh Sweetheart! If I were there with you I would give you a hug and let you cry on my shoulder. I know you're hurting and maybe a little scared but you are not alone! Not only am I here for you but I'm sure others are as well.
Just let it all out and then realize it could be worse. For example, your son could have Battens Disease ( a neurological disease) which cause someone to progress to loosing their sight, hearing, mobility, ability to speak, ability to swollow & is fatal. I have a fiend who's only two kids has that and her kids are only 5 and seven and a half. They don't expect the seven and a half year old to live more than two years if that and the five year old maybe four years if that. So count your blessing. It's not fatal. He's alive and other than being a little bit different he's fine! I know it's hard and it will be but you're not alone. Contact me anytime! I'm hear for you even if you just need to vent!
Hope this helped you!
thank you sooooo much, the words of encouragment are good! I thinkt he hardest thing is know he won't talk for a long time! I just need to stay positve. I feel for those families, that have to go through so much more thatn me:) I appreciate your email. I hope to stay in touch .
First of all be strong for you little one. I am a retired autism specialist and I can terll you that early diagnosis and intervention are the key to sucess. You WILL be this child's advocate during his education and you must remain strong. Alliagn yourself with the shools early interevention specialists in your area, educate youreslf on Special Education Law (WrightsLaw.com) and become partners with your therapists. Please feel free to contact me for any help, I work as an educational advocate (usually free of charge) assisting parents navigate the special education system. firstname.lastname@example.org Best wishes and hang in there, better days ahead! Nancy
October 1, 2012 at 11:20 AM
For myself I dealt with it by getting all the therapies lined up - if I was doing something like harrassing (nicely but still) the state about ABA hours or finding a speech therapist that we liked, or reading book after book after book about autism, then I was DOING SOMETHING to help my kid and that made a huge difference. For me, and hopefully for him, but at that point it was at least as much for me and my sanity. The mantra of "he's the same kid I've known and loved since the day he was born" helped but man was it hard to shut up that little part of my brain screaming BUT HE HAS AUTISM!!! Less than a year later my son is doing well in his ABA and speech, is starting to talk, is happy and sweet and funny and all the things he was before we got the diagnosis and more. That voice is still there, believe me, but now I can say "yes, he has autism, but look at how far we've come in less than a year. He is wonderful."
Something to keep in mind. At this point, you have a labor, but it's just a name. Your child is the same child he was before, and the same child he will be afterwards. What will change now, is that with the help of a support staff, things will get better, they will get easier.
Family can be hard. They are close enough to see the challenges, but they are not there to see every single struggle. They can be judgementel, they can be unsupportive.
But you will find someone in your family who will be there for you, to help and support, and give you a shoulder to cry on.
by letstalk747October 1, 2012 at 1:29 PM
hi there , yes , it is hard , he is still the same kid inside- i know you know that , so educate yourself more and then more and ongoing , we never know how its going to be for our kid till they get older thru the years.
I am sending you peace , and strength , glad you are here , lots of support here