Uggghhhhh!!!

iVillage Member
Registered: 06-13-2007
Uggghhhhh!!!
7
Wed, 06-13-2007 - 1:20pm
Well....it's official. My DS has been diagnosed with PDD-NOS. I had been preparing for the moment that I might have to actually hear it, but it did NO GOOD. I am devistated. I can't help but think of the rest of Dakota's life and what will it be like? Will he ever be able to play organized sports without being the team "entertainment"? Will he be able to get a good education? Go to college? Live on his own? OMG I don't know any of the answers to these questions! I'm still numb from hearing the dx and not sure if I heard the entire description of what it is EXACTLY. Can anyone help shed some light on this for me, so I can start to look for things to help my son? Thanx.
iVillage Member
Registered: 08-10-2006
Wed, 06-13-2007 - 1:55pm

Oh honey I am in the same boat as you are. My Nicholas, 5 was dx'd Asperger's just yesterday! I suspected it for a month or so, we had the ADHD dx since March and knew something else was amiss. You came to the right place for support. These women have given me alot of great advice, a "shoulder" to lean on, many hugs and some really good laughs.

All of the things you want are possible. I have high hopes for my Nick. NEVER GIVE UP ON YOUR DREAMS. You may have to fight a little harder for them, but they can come true. I have learned so much from Nick that I may not learned if he didnt have AS. You wont have the answer to tomorrow's questions today, so just take each day as it comes. Come here often with your questions, vents, etc. You will learn alot from these ladies.

Christine

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Christine

iVillage Member
Registered: 03-21-2007
Wed, 06-13-2007 - 1:56pm

hi there, as a Dad to little boy diagnosed with the same thing, all i can say is i had the exact same thoughts, we all want the best for our kids, and that kick in the guts feeling when someone announces that your child isn't perfect never quite goes away.
What I can say is 6 months down the line for us, we have our good days and bad days, but he's still my little lad and his only limitations for his future are those that ourselves and others put upon him. if Joe wants to be a pilot, cop, doctor or vet, my job is to make sure he gets all the help he needs to achieve his goals.
remember let no one put limitations on your child, and don't slip into the trap of putting them there yourself.
ok our kids are "special" but weren't they always?

chin up
Dave Parkes

iVillage Member
Registered: 06-13-2007
Wed, 06-13-2007 - 2:51pm
Thank you guys so much for your replies. I got an appt. with the Kelly O'Leary center for autism spectrum disorders @cincinnati children's hospital for Aug.28th to get a second opinion. I wanna make SURE they agree with the initial dx. Never hurts to get a second opinion on ANYTHING! He has been dx with ADHD since 2005 but I knew there was something else there the older he got. The dr has him on Focalin XR (has for a while now) for the ADHD and just put him on Tenex today as a mood stabilizer. I'm not happy that he is on 1 med let alone 2! But if it will help with his daily meltdowns and tantrums, maybe I should give it a go. Thanks again guys and I will let you know how it's going!.....Jen
iVillage Member
Registered: 08-10-2006
Wed, 06-13-2007 - 3:05pm
Hi Jen,
If it is any consolation, Nick is on clonidine for his rages, and it has been an absolute life saver for us. Our lives were h**l before starting it. We also had him on Metadate CD for his ADHD before we started the clonidine, but wanted to do 1 at a time so we took him off, but we will probably add it again when he starts school. I was very hesitant about the meds, especially the clonidine, I was actually a bit scared, but he is doing great with NO side effects and our family is too. The best you can do is try and see, who knows, it just might help!
Christine

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Christine

iVillage Member
Registered: 03-26-2003
Wed, 06-13-2007 - 3:27pm

Hey there,

I have been in your shoes and slip back on occasion, but there is also a light at the end of the tunnel for me now as well (and not just from the brag above)

My kids were first diagnosed years ago and it was a total kick in the stomach. I wasn't sure I would ever even have a conversation with Her. That she would ever have a single friend,etc. In someways expectations will change but they don't have to be less or worse, just different.

Will they play organized sports? Maybe, maybe not. Some kids with ASD do but some typical kids don't either. It isn't every kids thing that they enjoy. What is important is finding their passion and something they are good at that they can feel good about. It doesn't have to be soccer. My dd's thing is volunteering at a theraputic horsemanship program for kids with disabilities. She has been riding there for years herself. Her other new thing is drama. She isn't the best at it. She won't get huge roles but she enjoys the heck out of it and loves being part of that.

Will they go to college? No reason why not. I know of young adults with down syndrome, autism, learning disabilities, etc that go to college. Some HFA/AS/PDD-NOS type kids actually thrive in college when they did not do well in public school. There are many community college programs that have supports for those with special needs. There are even some colleges that cater specifically to those with special needs. We figure that IF the kids decide they want to go to college (not a definite) then we will put them in the local community college first and make sure they have supports. from there they can transfer into a local 4 year state college.

It is hard not to do the doom and gloom. I am darn guilty of that myself often. My kids are both affected enough to require significant supports. My biggest challenge with them is teaching them the skills so they can be independent. Bathing and dressing as well as being able to stay home alone (GASP) we have been working on this a while and are still far from what their peers are on this (11 and 13). But it is a process and all skills they have to learn. Soon I will let them start walking places or beign alone at the movies with a peer. maybe, lol.

Things like romance, college, sports, are not neccessarily going to be easy for our kids. It may take specific instruction to teach them these skills but it is possible.

I understand too abotu the behaviors, lord I understand. But it another skill we have to teach and they need to be part of. Mike knows. I have TOLD him that this behavior will make it so he can't keep a job. That yelling and hitting as an adult will cause him to go to jail. He NEEDS to work with me to help stop these behaviors so he can have a job and friends, etc.

Renee

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iVillage Member
Registered: 05-16-2006
Wed, 06-13-2007 - 8:54pm

I totally agree with Renee's post. My little guy was dx'd last April, a day I will carry in my heart for life.
Let me begin to tell you, DON'T GIVE UP ON YOUR KID--DREAMS & HOPE.

My son (was 2 1/2) when dx'd. Now after a year he was discharged from OT today. It was a moment I haven't felt yet--him able to accomplish this "disorder" and not let it rob him of what life has to offer.

We had a assesment tonight for our in-home help----he is xtra high functioning. I had my spirits lifted 2x today.

You are still in shock and the grief is just setting in. I would seek another opinion if you feel it would give you a concrete answer.

There are so many programs available for kids, and getting it all in order is a task BUT the know that it WILL benefit your child is priceless.

Adam still has set backs and we have days taht take me in a dark place BUT I won't let his PDD/Autism define WHO my child is.

Hang in there................

Good Luck
Nora

iVillage Member
Registered: 03-20-2003
Wed, 06-13-2007 - 10:27pm

Oh, man, you guys are bringing back some memories.

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