hi, new here | Autism PDD
Mark, some days are better than others... just have to go with the flow. Also seems like once you know the signs other characteristics you hadnt noticed before are suddenly there. Hang in there... Once therapies start things will begin falling in place and getting easier to handle. As far as the book call your local public library and see if they can get ahold of a copy for you to borrow.
My daughter is almost 4. PDD-NOS, borderline autism. About a year behind in speech and gross motor ability. She talks in abstract forms. We understand her but strangers have a hard time. She is very verbal but it is hard to understand what she is thinking. SHe will ask why but over and over to a question that has no aparent meaning...and when she gets an answer she still says why and why and well, you get it.
It has been a hard road. I haven't any support because Anna looks normal. She is typical in many ways to the outsider. I have to live with her roaming eyes her lack of focus her strange demands and unwarrented fears. I would like to say it gets easier...but it realy isn't easier just better managed.
Anna is unique. She is happy. And I know that is all that matters. But, me, I am an emotional wreck. Her problems hit me like a tornado, and my thoughts and feelings have been the chaos left in its wake. I often feel I don't fit in. The groups around here are for severe autistic and menatlly challanged people. They look at her and say she can talk and she looks fine, And my friends who have typical children are hard to be around because they aren't able to understand or help. Matter of fact, as they talk to their kids, who are my daughters age, I die a little inside. I would love to have that ability to converse back and forth like they do.
SOrry I am not a more positive person with positive feedback. I don't want to sugar coat or give advise like "Oh things are good, and, Oh your child can talk so that is wonderful" because the truth is, though it is a positive, it isn't good or wonderful, it is hard and stressful.
I hear what you're saying about dying a little inside watching NT families, Mary. Even going to the park has nearly brought both my wife and I to tears recently. The differences are so stark some days. Not every day, but often.But we're mourning for our original idea of our son, not our son. He's very happy, and I think full of potential.
I've been thinking back to the day we were told about the test for Downs Syndrome that they can do during pregnancy, and about how we decided not to do it, because we both agreed we'd want the child whether it had Downs Syndrome or not. And I think we really meant it (even if we didn't really think it would happen).
It's important during these difficult days for me to visit that place in time, to remember how we felt about the uncertain future. We're all subject to fate. How we handle chaos determines how we'll be remembered -- and most importantly, how we're remembered by our children.
A friend of mine with 3 AS children told me early on that at least none of the symptoms last forever--that they would be replace by new ones. I didn't appreciate the wisdom or humor then. I do now. It is a rollercoaster. I'm new here but it seems like most everyone says the same thing--it gets easier in most ways. Either they get better or we do. Or they get better drugs or we do. But it gets better. I'm sorry Mark and Mary about the hard time right now. I relate so much to what you both say.
It's wonderful that you're here and seeking and giving support and wisdom.
Hi Mark Welcome to the board, its full of caring and supportive people who UNDERSTAND exactly what you are saying and who will listen and try to help where they can. I hope you are able to get the answers you are looking for and that the evaluation goes well. Please keep us posted! Heres a link that can connect you with parents in your area to help find resources near you. Hang in there! http://www.unlockingautism.org/repfinder2.aspHi and welcome to the board! My son Luke is 29 mos and was dx'd with PDD NOS. He doesn't talk, but is very affectionate and interactive with us. We have him in ST, OT, and early early intervention (where they do floortime therapy, modified) and we're looking to begin an ABA program as soon as we can find some tutors willing to take our money! ;) It's great that your son is saying some words. Have you read the book "More Than Words"? It's an excellent resource for helping to progress your child's communication, no matter what level he is at.Nice to have you with us!
Kellie
Thanks again, everyone, for the replies and input. Kellie -- that book sounds pretty great! Wish it wasn't so expensive...
Today was a bad, bad day. Visitors with an NT son (1 yo) came by and our son was in rare form, stimming like mad the entire time they were here (growling and jumping in place, constant echolalia). Everyone, us included, was completely driven bonkers by his behavior. My wife was almost in tears.
I know you can all identify, and this seemed a good place to vent. Please God, let tomorrow be a better day.
We meet with a floortime therapist Thursday. I am trying to stay positive going into that meeting. I have a good feeling about the place. But today, it feels distinctly as if our son is getting worse. I hope I'm wrong.
Our 34 mo. old son is in the process of being evaluated for possible PDD-NOS or HFA. We're not sure which it is yet. He is talking, but not conversing, and his speech is limited to requests, delayed echolalia (and immediate echolalia to a lesser extent), and labelling. He makes some very minor commentary on his environment ("air cold!" "cold water!" "hot!" "loud!" etc.). He stims when excited (jumping, and pressing fingers tightly together or flapping his hands), but it is not excessive. He will answer some questions, but doesn't seem to understand most questions and never asks them himself.
Additionally, he usually interacts with other children as if they aren't even there, or as if they are objects. Fortunately, he's usually fairly interactive with us (tho his interactions aren't quite "normal") and makes great eye contact, especially during physical play or singing songs.
We are looking into floortime as a possible route of therapy, and would love to talk to other parents doing that, esp. if they are in our area (Chicago).
Our son seems to have a lot going for him. He learns new words seemingly every day, and is doing new things all the time. Primarily, we are concerned about his ability to truly communicate and to use communication and play socially.
I'll be here on and off a lot in the near future as we come to terms with his unique situation and the therapies it requires.
Thanks,
Mark
Hi Mark,
My son has been recently diagnosed and has been receiving ABA, OT, and floor time(DI). He also goes to a gym class for special needs kids that i and him absolutely love. I don't have a lot of answers since i am just figuring it all out myself. I can tell you that this site is the best thing that i have found so far. I've read all the books, checked out all the web sites on ASD, and although helpful, they cannot compare to talking to people who know EXACTLY what you are feeling. The people here are like talking to an old friend, I can't tell you enough of how good it feels to ask a question and get a response that isn't "clinical". I've only been here a week and i'm hooked!
Danielle
Danielle --Thansk for the response!
Good to know this place is everything it appears to be. Most of the other boards I've found have a few really great people, but no real community feel. I think we need that.
We're still in that denial fog... my wife still doesn't believe he's anything but speech delayed. I, on the other hand, am convinced it's autism, and some days I'm not even convinced it's HF. Then there are other days that are so damned normal. Such a rollercoaster.
I am certainly in mourning, but only for us. Our son is incredibly happy (if a little frustrated because of the speech thing). I was about to start self-employment when we realized something wasn't quite right. I think I can kiss that goodbye. I need the benefits from my day job. If anything, night employment to supplement my day income is more likely that pursuing my dream career. Oh well.. this is the gamble of parenthood, yes? There's no question what's most important.
Mark
Also, how do you like floortime? It seems the most sensible therapy for a kid like mine.
Mark,
I just wanted to say welcome and that your son sounds so much like mine at that age. Adam is 3 1/2 now and he will ask certain questions now. He will also answer certain questions too. He is not completely conversational like a nt 3 year old but I can honestly say that I believe that he will be some day. There was a time that I wouldn't have said this. He was initally diagnosed with PDD-NOS and was pending the Autism diagnosis on a social eval. He recently made just enough critera in the social to have autism. My son is quite social for being on the spectrum and makes eye contact etc. He lacks some social skills with children his own age...but older children and adults he does really well with. He also has sensory integration dysfunction and gets speech and OT. He is starting preschool in a teaach class tomorrow for autistic children. I did my own type of "floortime" with him. I read everthing I could on therapies and this is the one that stuck. I wouldn't say that it's exactly what I use but I do get in the floor with him several times during the day and do social play with him initiating the activities. It has really seemed to help him come along with language AND social. ANyway...just wanted to say welcome!! Glad to have you here. Take care,
karrie
Welcome--I've been here a day and I'm hooked. Been looking at these for 8 years. Floortime wasn't official when my son was diagnosed but it is what I did at first and it worked great. I've tried everything (every child responds differently to the intervention) and I stick with what works and change as the needs change. The interventions and prognosis get better all the time.
As for denial, I called it the "A" word and wouldn't hear the dx til my son was 6. I stuck with loose explanations and doctors the evil eye so they wouldn't say or write the "A" word. I did what I need to do--I just couldn't acknowledge and say it. I was my way of keeping the energy I needed.
Good Luck.\ps I lived in La Grange until my son was 4. Lots of good resources with more now I'm sure.
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