I should probably introduce myself....

iVillage Member
Registered: 03-31-2003
I should probably introduce myself....
5
Fri, 06-03-2005 - 6:28pm

I have started posting here recently and should probably introduce myself.

My name is Marisol and I have a 2 1/2 year old son, Ian, who is autistic. He was diagnosed with autism when he was around 22 months old. I took him into speech therapy through my HMO when he was 20 months old because he was not gainnig new words, and was in fact losing the the 6-8 words he did have. Little did I know that was a red flag....I was 7 months pregnant at the time and wanted to get his speech back on track before I had the new baby. The next 2 months were spent getting evaluations through a developmental ped. and through early intervension. Both evaluations came back with a dx of ASD. I remember when teh speech path told me she was referring Ian for some additional testing and recommended I call EI. She seemed so serious I got nervous. My response was "Well, we have ruled out anything like autism haven't we?". When she said we could not rule that out, I remember feeling like I went into shock.

The last 6 months have been a whirlwind of therapist and classes. We are doing speech therapy and social training through EI and hired an RDI therapist to help Ian. RDI has been a life-saver. Not the EI is not also great, but our RDI therapist has really given us some great training techniques to use with Ian.

I still struggle with accepting everything- I think acceptance comes in waves, and over time. I try to feel lucky that Ian is a HFA and making strides weekly. We have been able to curb his obession with spinning objects and flushing toilets. Ian has started making much better eye contact and looks to us for our reactions sometimes. He does not stim, and the head banging that had started last fall we have been able to stop.

But my heart still aches at his lack of communication. I know it could be worse. Ian has about 25 words that he uses- they are more for labeling things (purple, blue, mama....)than really communicative words. I am hopeful that a year from now he will be able to tell us if he is thirsty or hungry- or really that he will be able to tell us anything he feels.

On a positive note, he is potty trained. Our daycare woman insists on potty training young, and is really good at it. Though Ian cannot tell us he needs to go, nor does his tell us non-verbally, as long as me have him sit on the potty even 1-2 hours, he will go in the potty. We only have accidents about 1-2 times per week. I swear I will dance I jig the day he tells me he has to go!

My new baby Ava is 5 months old now. He has started noticing her big brother and smiles at him a lot. Ian completely ignores her existance. If I set he close to him, he will move away without even looking at her. I hope as she gets older that he feelings are not hurt that he will not smile back at her.... maybe someday he will.

I currently work 3 days a week, so I fit all of Ian's classes into 2 days. Come January I expect to quit working because Ian will be in preschool classes through early education 3 half days per week and there is no way I can work my schedule around that. I am fine with that. Anything I can do to help Ian at this young age I am more than willing to commit to.

I am eager to get to know you all. Before all of this started I had no clue how many other families were dealing with this. I wish there were fewer of us, but am glad to have a place for information and support.

iVillage Member
Registered: 10-09-2003
Mon, 06-13-2005 - 10:18am

Welcome, Marisol!

~ Chelsea
iVillage Member
Registered: 01-19-2005
Mon, 06-06-2005 - 11:56am

Hi Marisol,

I just wanted to say hello and to welcome you too. I think you should feel proud of the strides your son is making in speech and with his sensory/social issues. Also, to be potty trained so early is truly amazing for our kids. I know it's hard to believe sometimes, I struggle all the time, but it sounds like you are doing a great job and your son is really making great progress.

My son sounds quite similar to yours. Eric is now 3 and was diagnosed at around 21 mos. w/PDD-NOS and started an early intervention program w/Speech and OT twice weekly. I also do floortime (which I think is a "cousin" to RDI) at home.

Eric started speaking much like your son, at first single words and mostly labels or descriptive. But take heart, I bet your guy will start doing multi-word combinations soon. That breakthrough moment of "more juice" will come soon. It is so hard to wait, though, I know.

I also understand your work situation. I was working 3 days a week until Eric was diagnosed and now I just pick up occasional free-lance work I can do at home from time to time. Mostly I am Eric's therapy coach, chauffeur, cook, and mom!

The acceptance thing is hard and something I truly struggle with too. Your description of "waves" I think is right on. When we first got the dx I jumped head first into action mode. I think I thought we'd be intense with therapy for a year or two and that it would "all be better" but now I see it is really something we are in for the long term. But on the other hand, I think I am also starting to see what might be called the "gifts" of autism. Eric's attention to detail is amazing and he has such an honest way about looking at the world, even if it is different from my own. I guess it is a kind of innocence that he has, if that is the right word. He takes joy in things I do not understand, but it is such a pure joyfulness that I still have to smile.

This is a wonderful group and like you said, it would be nice if there were fewer of us, but at least we have each other.

Katherine


iVillage Member
Registered: 03-26-2003
Sat, 06-04-2005 - 11:21pm

Welcome Marisol to our little corner of the world.

I have 4 kiddo's ages 5-11. My oldest 2 (Cait-11 and Mike-9) are both AS/HFA, Emily is 7 and has some vision processing problems/possible mild LD, and the youngest, Dave, is 5 with ADHD and PDD-NOS. Way to much to go into all thier stories, but they really are all making strides and life is getting easier as they get older.

Welcome again. Nice to "meet" you.

Renee

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iVillage Member
Registered: 03-27-2003
Sat, 06-04-2005 - 4:10pm

Hi there.
I have a 4.5 year old boy who was diagnosed with PDD-NOS back in February. We have always known he was delayed, and the fact that he was born at about 33 weeks really confused matters. Right after he turned 3 (and I'd just had his baby sister) I read some things about autistic spectrum online and it hit me hard. At that moment I knew what my son had.
He'd received physical therapy from age 6 mos-18 mos through EI due to hypotonia and gross motor delays. When he began walking alone at 18 months, EI stopped his PT, saying he was age-appropriate on gross motor. Then we began speech, since his only word at 18 months was "dog." As he approached 3, EI said he was doing very well, and that we were just "fine-tuning" him. They never mentioned autism, even though he had echoing speech. The school district tested him then and, though he was found to be a full year behind in all areas, said he did not qualify for their PPCD. So he got speech sessions once/week. Once I read about the PDD spectrum we sought help from the Pediatrician, who sent us to OT. His diagnosis then was Sensory Integration and possible PDD mild. The OT did not think he had PDD until after many months of working with him. So on her suggestion, we took Aaron to a psychologist.
He has come so far in the past year. He still has some quirks, but now not every single thing is a meltdown. He tolerates changes well and I am thankful for that. He has been in regular preschool all along and has one more year left before Kindergarten. So far they are telling me he will be in a regular classroom, with some extra help maybe.
Right now I am trying to keep him busy for the summer. It is hard since there is no preschool now. Too much tv is a bad thing, and he doesn't play much with toys. We do crafts, bubbles, outings, yard play, and I keep trying to introduce him to new things. Last week he went on his first boat ride and it was actually a great day!
Nice to meet you.

Amanda

iVillage Member
Registered: 02-24-2004
Fri, 06-03-2005 - 9:00pm

Hi Marisol,

Welcome to the board. I'm Michelle and I have 2 boys, Tyler 8 NT, and Nathan 6 HFA. I also didn't realize how common autism is, until I started doing my research too. Nathan got dx'd last year. I worked with him at home when he was little, with potty training, speech, facial expressions, play skills etc. I didn't even suspect autism, I thought his personality was just different than his brother, and that he was a bit delayed. Anyway, to make a long story short....we had him evaluated by a neuropsychologist, and with no hesitation, he dx'd Nathan with HFA. He's in a regular kindergarten class this year with an aid that he shares with other students. He's doing well academically, but we're working on his social skills now.

His brother has been a big help though. He teaches Nathan how to play board games, cards, and just how to interact. Nathan picks up alot of his phrases from his brother too. The only therapy is speech, which he gets at school. That seems to be the biggest thing he needs help with. Everything else....I do at home. He's quirky, unpredictable, extremely funny, and full of energy! He also loves to stay home and loves it when it's quiet. He has lots of anxiety and sensory issues so our days are pretty full!!!

His speech has really progressed, so it's been interesting being able to have conversations with him (if you want to call it that! LOL) I've learned alot about him and how his little mind works!!

Anyway, glad to have you here! Hope to learn more about you and your family!

Michelle