Journey update

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Registered: 12-31-1969
Journey update
11
Mon, 05-04-2009 - 3:00pm

So many have asked how JB is doing, so I thought I'd give a little update. Honestly, he's doing a lot better than I am.

He's been to the autism center for some social development workshops, which have helped tremendously. He still needs work there, but he is now social enough that he can engage in games with the other children in the area. We are still working on non-verbal interactions, but I have to say that he is making tremendous strides socially. He is spending so much time at the autism center, they are able to see more of his behavior. This is a love/hate thing for me. It's good in that they are able to get a better picture of where he is. On the other hand, they say Asperger's so many times in a session, it's making me defensive. He's way too young to be diagnosed for Asperger's - even with them. I know they are just trying to prepare me, but I got it the first 19 times they mentioned it.

As he continues to develop, his senses are developing too. As a result, we are dealing with a lot of sensory issues right now. Not only is it tactile anymore. Now we have sound, light, and taste sensitivities. On the bright side, we were able to identify these very quickly and put plans into place in a matter of days or weeks at the latest. We still focus on the tactile sensory issues primarily, but have put into place a number of plans to help him be comfortable in his environment so that he can do 'normal' kid things. He wears noise canceling head phones a lot, I put dimmers on all the lights in the house, etc. It's amazing to me how quickly he is catching up with his motor skills now that we have his senses under better control. His motor skills are really taking off.

I am struggling because I do not consider a lot of the therapy exercises he has to do a lot of fun. Primarily because it is so much work to get him to do the things he does not want to do. It's not a ton of fun for him either. We do take some time out each day to just have fun. Afterall, he is 2. But everything else we do works on social/physical/sensory development or some combination thereof. I do try to make some things as fun as possible. For example, his sense of taste and smell are really taking off. He has shown a great interest in spices. So I let him smell and identify the various spices in the spice rack. His newest thing is to see if he can identify those spices in his meal. So he is learning the basics of food science right now and the basics of flavor combinations and cooking. It's the very basics, but he's 2.

Cognitively, he's still out of the park. Extremely intelligent.

All that said, I am very grateful we caught his sensory issues so early. There cannot be enough said about early intervention. The OT has told us that JB has a number of strengths. The fact that he is already learning to use those strengths to help himself out is amazing. Because we have put so many things into place at such a young age, we are very hopeful this year is our rough year. He is responding so well to OT that the doors that were closing at the beginning of the year have begun to slowly crack back open.

My apologies this turned into a novel. I have to run because someone has decided there will not be a nap today. Sigh.

Caren

iVillage Member
Registered: 06-05-2006
In reply to:
Mon, 05-04-2009 - 4:35pm

Caren-


I think you are doing an amazing job.

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iVillage Member
Registered: 04-07-2003
In reply to:
Mon, 05-04-2009 - 8:06pm

hi Caren-
Congrats on all of his progress, he sounds like he is doing amazing.

Alison

kaiamarin
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iVillage Member
Registered: 04-06-2007
In reply to:
Tue, 05-05-2009 - 12:59am

Caren,

Thank you for continuing to share your journey with us. It sounds like JB is making wonderful progress and that is what matters the most. I am sure those folks think they are doing what is best by mentioning a specific diagnoses a lot - but I would ask them to cut it out. You know what JB is capable of and there isn't a label out there that will change what an amazing and exceptional young boy he is.

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Avatar for witzz
iVillage Member
Registered: 08-16-2004
In reply to:
Tue, 05-05-2009 - 10:10am

Hi Caren,


It sounds like JB has made great progress! Your descriptions of his experiences of the world are amazing. I love the image of him sniffing various spices - it reminds me of the movie Ratatouille - have you seen it? You may have an aspiring chef on your hands!


Anyway, regarding the Asperger's label... it's getting thrown around a lot these days; it's almost become a generic term meaning "quirky." I work with computers, and at least 50% of the people around me are "quirky."


Best wishes,


Witzz
Mom to Lucy, 3

iVillage Member
Registered: 04-07-2003
In reply to:
Tue, 05-05-2009 - 2:44pm

Caren-
You are too funny. I think for Kaia age 3 was the hardest for her, but we didn't know she had sensory integration disorder then so we were only helping for her speech. The original Developmental Pediatrician never even brought this up to us. Once we switched Dev Ped's things changed dramatically very fast.

I also wanted to mention (and you should speak with your OT first before doing this): We have made our home a sanctuary for her, we don't allow loud sounds (no doorbell), keep the lights lower, keep schedules everywhere for her only at home. We went to visit a private school for Kaia for next year, and there was a loud sound and she asked what it was. The teacher told me she would turn off the walkie-talkie and I told her not to. I had her show Kaia what it was and why it made the sounds.

We feel that she needs to deal with life as it is outside, and we make sure she has a safe environment at home that she get let her guard down and not have to anticipate the next sound coming. When we are out I will mention to her if I see a train, fire truck etc... coming so she can get herself prepared for it, but I wont let her wear headphones outside. Our Dev Ped recommended this, and our OT agreed with this. This has really helped her get used to sounds outside. The only exclusion I make in this is at school, I told them they must tell her ahead of time if a fire alarm goes off so she doesn't get scared. If it were a real fire I wouldn't care if it hurt her ears, but for an alarm, I don't want it to ruin her whole day.

You are doing an awesome job with Jaybird!! I am glad you posted an update.

Alison

kaiamarin
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iVillage Member
Registered: 04-23-2007
In reply to:
Tue, 05-05-2009 - 4:39pm

Caren,


Sounds like JB is doing great. Sounds like you just need to get through this year and perhaps things will get better/easier. We are rooting for you guys!

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iVillage Member
Registered: 11-29-2005
In reply to:
Tue, 05-05-2009 - 5:21pm

Caren you're doing such a wonderful job with the Bird. Keep up the progress reports too. JB is a smarty. He understands intuitively what I say every.single.day; "dim the lights" LOL. Around here we call it "raising the prices" because fancy restaurants are more dimly lit that cheap ones LOL.

Robert is very into spices too. He digs in my spice box and sniffs the smells. Poor devil, a couple weeks ago he got into the cayenne and sniffed out rather than in. Oh Caren, he blew cayenne all over his eyes. Watch out for that one! Our boys seem to like very similar things. Is your kid an obsessive counter?

BTW I agree with Reena. I wouldn't hesitate to tell the therapists to tune down the 'aspergers' talk a little. It is too early to label him and frankly not helpful.


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babies09.jpg picture by PGAIVF

iVillage Member
Registered: 12-26-2006
In reply to:
Wed, 05-06-2009 - 4:26pm
Love silent e story.
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iVillage Member
Registered: 03-20-2009
In reply to:
Thu, 05-07-2009 - 8:42pm

Caren, you are doing a great job with JB. As you know my BFFs son is autistic. I often tell her how I go to alot of playgroups and you wouldnt believe the number of moms who have 3 year olds who are, to me, obviously either autistic or on the spectrum with massive problems and these moms do NOTHING for their kids. They think they are just slow talkers or terrible 2s or what have you. (I am no expert but even some other moms were talking about this one child so I know I am not crazy.)

My point is, it takes a brave mom and a brave kid to see something and get help at an early age. My BFF did the same and her son is doing great. You wouldnt believe how many parents wont admit the problem or are understandably afraid and dont get help for their kids early. Its the "early" in early intervention that makes such a huge difference.

Chris, Audrey counts everything. Just like her dad. Steps, buttons, eggs, stickers. "1,2,3,4,5,6,7,8,9,10, awteen, 17,18,19, tree". Thats how she counts. LOL

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