Where to start?

January 23, 2013

Honestly. I am not sure I even know where to start - or where this post will end up. My mind is a jumble with all of the evaluations and recommendations and changes that I am just overwhelmed with it all.

Since I triumphantly posted that Sam did not have autism, but PDD-NOS a shit load has happened. Some good, a little less than good, and everything in between.

The day we got the official diagnosis, we all hoped into the car and drove up to Lake Tahoe for the holiday break. This is a family tradition, and one that I honestly love. There is something about spending two weeks in my parents house in Northstar with them and the kids that makes me smile. We also timed our trip perfectly. By leaving a few days early, we managed to get up to the mountains before the big storm hit; which meant we were there to enjoy it. And enjoy it we did. It snowed huge fluffy snow flakes for days. Irene made a game of clearing off the railing on my parents deck every five hours just so she could see how much snow was actually falling. The best though was Sam. The first time he really noticed the huge snowflakes, he looked at me all confused. Then he looked back out the windows, got a huge smile and said "bubbles". From that point on, we all called snow "bubbles"... well, until Sam threw a temper tantrum that the "bubbles" would not pop. Then we corrected him and called them "snow bubbles".

Our trip to Tahoe would have been perfect had it not been for a vicious bout of the stomach flu that started with Sam, migrated to me then to Irene and then to my dad. Irene, my dad and Sam showed their strength and resiliency by bouncing back quickly... I was down for the count for almost four days.
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The break of Tahoe was really great for all of us. It helped me have some time to digest Sam's diagnosis and spend lots of good quality time watching and observing him.

When we got home, I set about starting Sam down his new path of therapies. The first thing I did was let his speech therapist go. Now that we officially had word that Sam was on the spectrum, but not Autistic, I didn't need the negativity of the therapist dragging me down. It felt great to cut those ties. I already have enough anxiety about Sam being Autistic, the last thing I needed was a therapist telling me at every turn that his actions are classic signs of Autism.

With the speech therapist out, we started in with the DIR/Floortime therapist. This doctor came highly recommended to us by the developmental pediatrician. I really liked her and her approach. SSo far we have had only two sessions with her. The first was just the doctor, Peter and myself. She asked us millions of questions and talked to us a bit about what DIR/Floortime is all about and how it can help. Her second visit was at out house. She want to watch Sam in a familiar environment. Mostly what she did was observe Sam and I at play and to worked with us on things we could do to make his play time more "meaningful". It was a really exhausting session for me, as she was here for 2.5 hours... which meant for 2.5 hours I had to be highly focused and engaged with Sam. I know it sounds silly, but 2.5 hour without a break or a distraction really can take a toll on you.

On top of all of that, I have been petitioning the Regional Center to get Sam re-admitted to their program. In order to qualify, Sam needed to have either one 50% delay or two 33% delays. His speech delays counted as one of the 33% delays, so he needed to be evaluated by their experts to see if he had any other significant delays. That evaluation was this morning... and honestly, I am still reeling a bit from it. The good news: we are back in with the Regional Center! The bad news: finding another 33% delay was really easy. Their experts agreed with Sam's PDD-NOS diagnosis, but they were struck by his "severe developmental delays". Sam is showing a 33% delay in his cognitive, social-emotional and adaptive skills on top of his speech delays. In fact, in the social evaluation, for interpersonal skills... Sam evaluated at the 9 month level. Yes - 9 months. That was not a typo.

So, what now?

Well. We continue with his OT. I need to find a new speech therapist. We will continue with DIR/Floortime therapy. And... here is the kicker... the developmental pediatrician has recommended we start Sam in ABA therapy. For those that don't know (and I didn't know), ABA therpay is 20 hours a week. For those of you adding this up, we are talking 22-24 hours a week of therapy for Sam (and me).

How the hell am I supposed to manage a job, a 7 year old, a house, being a mom, being a wife and 24 hours of therapy a week?! Oh yeah... and making some time for myself in there too.

Needless to say, I have a lot to digest and a long road ahead.

I am still working on getting a new speech therapist for Sam - and am hoping to have that sorted in the next week.

Tagged: Autism
Hello! I found you on Project Underblog and wanted to pop over and say hi. I just want to say, I am sorry to hear about Sam’s diagnosis, but glad for you that they caught it early(ish) and you can start therapies now. My daughter was not diagnosed with PDD-NOS and ADD until she was six, so we had a long hard road before that and missed a lot of opportunities to enrich her earlier development. I know this diagnosis is new to you and probably very scary, but I think waiting on a diagnosis is the worst part – now you get to take action.
Email me if you ever want to chat – I totally depended on the internet community after Elise’s diagnosis because I don’t have any friends here whose kids are on the spectrum. I hope you and your family are doing well!
Thank you so much! I am very alone on this path as well, as I do not know anyone else with a child on the spectrum. I really appreciate you reaching out, and look for an email from me!
Seriously; this is OH, NO, SHIT! – and Congratulations! on actually getting the help. I very much wish you that it will indeed help him progress and pick up.
Stay sane.
Wow, I can see why you would be feeling overwhelmed. Pink recently qualified for regional services and I remember that day vividly. The feeling of relief that I wasn’t crazy and I’d be getting help…but at the same time the horror of knowing I wasn’t crazy and she *needed* help. We start her group therapy on Monday and I’m reeling at the 3-hour/week commitment. I know you can and will do it, I just wanted to let you know I know it stinks too. And I’ll have you and Sam in my thoughts more than ever. xo
Thanks Amy! I think you captured it perfectly… Yeah! They qualify! Shit! They qualify! I know that this will be the best thing for Sam – but I am so blown away by the time commitment this type of therapy requires. I just don’t know how anyone who isn’t in a position to work from home and set their own hours can do this. I know I am lucky that I am able to give this amount of time to Sam – I just really wish I didn’t have to.
I am sorry (and glad) to hear that Pink has qualified for services. I will keep the two of you in my thoughts as well. Any kid of yours is going to be a toughie… she will do what she is supposed to do when she is ready!

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