Still unclear | Autism PDD

Yes, Candy, the video is a very good idea. I dropped off stuff for the Child Center here that does evals in July, and they will call me in Sept when they have an opening. I filled out the paperwork they wanted me to. In addition I gave them a copy of my daily journal of his behaviors good and odd, a 1/2 hr video of diff events, and some copies of online tests I took. They said it was very helpful to have all this info.

I am in the same boat as you in waiting to see what is going on w/ ds. I feel I know in my heart. At first I was very uncertain about it, but after mths of talking to others, reading and researching, taking online tests, I now feel better. I have my down times of course still.

I believe he is on the spectrum, but I also love who he is the way he is. He hasn't been dx'd, but I already feel accepting of it. I know he'll be ok. I just feel it. And, while he really never gives affection, he loves to recieve it from dh and I. The few times he has on his own offered a kiss or something of the likes have been so precious they are etched in my heart. It's still hard and challenging, but every accomplishment means so much more this way. I hope you find the closure you are seeking soon.

Amber

Dh and I went into Albuquerque yesterday to talk to a Developmental Pediatrician to find out for sure what Ds might have. We talked with her for about an hour and she observed him and finally said that she really doesnt know if he has Autism or Pdd-nos, so were still unsure why he isnt catching up with his age group and why he still has certain behaviors. I was impressed with her so I felt like she was professional and knew what she was talking about. She did give us contact numbers for the Southwest Autism Network and wants us to call them and get an appointment for us to meet with them, there parents and professionals that deal with Autism. On one hand I'm relieved but on another the mystery of what is really wrong wiht him bothers me. Were just going to continue what we've been doing and he will be starting school Monday, so I guess we will have to see. Hopefully things will get worked out this year and we will finally have a clear Dx, just to ease me and Dh minds. I'm glad I have this board to post on

Candy, This is JMHO. I must agree that if it is PDD-NOS or classic, infantile or 'regular' autisim (The Ped Neuro says DS has infantile autism, the Ped Behaviral / developmental Dr says he has 'classic' autism). It is all on the autistic spectrum (some do not use these label, instead they say PDD), he is still his own unique little person and will need his services and supports adapted to his strengths and concerns, no matter what label comes and goes.

I certainly do believe you are still in fresh, new, deep grief. Sometimes (my DS was dx on 02/17/04) I grieve deeply for days. The secret for me is to pull myself back up and start plugging away at it again, though once I had to use an antidepressant / antianxiety medication to help. We both accept our children are special and we both want them to have the very best chance they can have. The Ped Neuro did tell me that children can and do test up and down and on and off the spectrum as they receive therapy and as they grow and adjust to thier own challanges.

I also want to tell you that I understand what you mean about them not always getting a total picture. Sometimes it seems as if Ihave 2 different little boys. Sometimes he is so totally and overwhelmingly autistic and other times it is almost as if he is just speech delayed. The first Ped Neuro we had wanted video of our DS's best and worst behaviors, he reviwed it befor coming in to see us.

All the best to your family. It sounds as if you are doing everything you can and that is all we can do!

((HUGS)) if ya want em

Jean38586.5087037037I appreciate the responses, I feel like some days it's better than others, and completely overwhelming. Living in a society that has to put labels on everything makes it hard for Dh and me, we dont label him at home but everyone else wants to put a label on him. He will be 4 in november and isnt close to being potty trained, talks like he is 1 and acts like it too, has bad anxiety and anger issues, so I guess I just was hoping for more clarification from the Dr. I hope to celebrate his accomplishments this year and hopefully get him more help if needed, I will keep everyone posted on his progress. Thanks for the responses, it does help

(((HUGS))) This phase is always the most difficult - wondering. From my personal experience, getting some kind of dx (Autism or not) brings closure to teh 'being in limbo' phase. During this phase, you don't want to devote 100% of your energy into a topic when you aren't sure that is what your child may have. It was just a relief for me to get the dx so that DH and I could move forward to which interventions to apply to dd. There are several different interventions (therapies) out there...you have to find the right one for your child.It is difficult not knowing, and I agree with you little byrd that I dont want to devote all my time on Autism or pdd-nos if he has neither or has just one. Others have mentioned some therapy is the same either way so I'm hoping if it remains unclear then he will at least be getting something. I should video tape him here at home and bring it in to the next appointment, I think they dont get to see Leo when he is acting out or doing his I'm in my own world thing. I guess were grieving right now and I just feel so much anxiety about the future. Alos now my daughter thinks Autism is something you can catch and die from

Still not sure where she picked that one up from

But I do appreciate all the support I get from the board. Thanks for listening everyone

candy26,

I don't know if this will help or not.

When we first started our son in developemental preschool at roughly the same age that your son is now, we honestly didn't know what we dealing with.We knew that something was a miss and he needed help.(My husband was also fighting me on labeling him so he would not allow him to be tested) My son's teachers started to use various teaching techniques with him and the ones that worked right off the bat were all geared towards a child on the autism spectrum.( Looking back on it now all the signs of autism were there, we just were in dinial and totally ignorant on the subject.)It really changed him drastically the first few months .

I sure hope sharing this helps

It's worth repeating that I am not a dr. and this is not an opinion of your situation--it is my opinion based on experience. Regardless of whether the dx is Autism or PDD the interventions will be the same. It will be more how much progress he can make and how he develops over time that will help place him on the spectrum. I understand wanting to know and I understand that it's nicer to hear PDD than Autism. The not knowing was and still is for me the hardest for me. But foucusing on the intervention and celebrating the wins and taking the bad days with a deep breath and the drink of your choice--that got me through.

Keep us informed.

pat