Happy New Year!

So here we are facing a new year.

Today the paperwork and official diagnostic evaluation was delivered to Early Intervention EI(service and program coordinators), Zach's pediatrician, and the central New York Developmental Disabilities Service Office CNYDDSO.

In the fax to the EI coordinators - we requested an immediate re-evaluation of Zach's current capabilities and to immediately address the recommendation for Yale for ABA type services. To the pediatrician, we hand delivered the report with strict order not to pass the dx to the developmental pediatrician, because I want an independent diagnosis. And to the CNYDDSO, I requested to be briefed on all program and resources Zach is eligible for, and am hoping to find out if we are eligible for a Medicare waiver. I am still learning what all of these things mean. So here we go. Welcome to 2009!

Anyhow, a few people have asked what they can do to help. I have let some people know that we have a wish list on amazon.com with books that we would like. Feel free to peruse and use the list as a resource if you are just interested in creating your own library. I am hoping to blog and give my review of each of the books I have read thus far. Maybe sometime in February?

Well, that is it for now. Time to go hug the kids and ring in the New Year.

HAPPY NEW YEAR!

The Christmas Miracle

We had the blessings of spending Christmas with our family - well most of them, those who didn't have the flu.
Uncle Mark (the new uncle Mark Steve's brother vs. the old uncle Mark Cathy's husband) couldn't make it in from New Hampshire due to illness. Jackie, Justin and Robbie J. all had the flue too. Wagilia just wasn't the same.

It will certainly be a memorable Christmas. Zach sort of opened a few of his presents. Sophie eagerly helped him open up most of his - and almost took a squatters position of ownership once she did open. Indeed, we didn't have the Christmas that we hoped for, but it was nice nonetheless. There weren't a ton of presents for the kids from Steve or I, we tried to go out and find things, but just a few choices were all that we made. I want my children to appreciate Christmas for more than presents so I sort of liked the simpler way. However, I know that we were missing a certain joy that comes with finding a really great toy for your child that you know they will go nuts for. I was envious of my siblings who got Wii's for their families knowing how much fun they would have as a family with such a great toy - and their kids are all grown up for the most part.

But our families really came through and took up some of the slack for getting the kids neat stuff that they seem to enjoy. Thank you so much!
Steve and I have been pretty consumed with reading the report from Yale andseeing the written words of Zach's diagnosis. It has much more of an impact than I imagined. It confirms the reality - its indisuptable now. I guess I was still hoping for someone to say - "no, he's fine, you are just overreacting." No such luck. Like I said before - how many times in your life would you hope for someone to call you a neurotic mother?

Aunt Cindy will be sorely mssed when she returns to Colorado. I noticed a particular attachment Sophia seems to have for her. Two kindered spirits?

Well, not all of our presents to Sophie are a bust. Sophie has been enchanted with the movie Madeline, so much that she has finally declared that when she grows up, she wants to be a nun. Whoa. First of all - Sophie never wants to grow up! Remember the 3 things? Or maybe I forgot to post them. Well Sophie has declared on a few occasions that there are "3 things" which I presume she means to be 3 truths in life to strive for - "1- I don't want to grow up. 2 - I don't want to die. And 3 - I don't want hair on my dupa." I can relate. Aunt Cindy declared that the Pope is likely quivering in his Prada shoes over the possibility. I told Sophie it was most admirable. With her preschool obsession of Nolan, we will just have to see what truly wins out in the end, a celibate life of working for the Lord, or her interest in hyperactive and cute Asian men .


Christmas Eve was spend with family at my sister's house. We have decided, for a number of years now, that for Cathy's birthday on the 24th of December, we will allow her to host a party for 25 or so of us in her honor at really muss up her house. She seems to do it with a smile so we will let her continue.

Christmas Day some family came to our house. It was a crazy day for me - Steve and I seemed to be operating in some sort of fog. But dinner came out pretty well. People ate and appeared somewhat merry. We couldn't get Natalie's petite amie to sing for us, but that's OK. The kids were busy doing their thing. And then came the evening. As everyone was preparing their exits, my dear niece Melissa went chasing Zach. I had no idea why. Then as she got her coat on to leave she told me. "Zach just said 'I love you'." She said that as she was getting ready to depart she told Sophie she loved her, and Zach then said to her "I love you." She chased him into the living room to see if she could get him to say it again by telling him "I love you" and sure enough he did it for her again. My sister-in-law Cindy confirmed.

One of my goals for Christmas was to get Zach to say "ho ho ho" when asked what Santa says. This was not fulfilled. But I never get what I want when I want it. God almost always throws me a curve ball when he does throw me a ball. I wasn't there to hear it, and haven't been able to get him to say it for me, but my son told someone he loved them. I don't care if it's echolalia or gustalt, he knew that when someone you love tells you that, you should say it back. If that aint a Christmas miracle, than I don't know what is.

Additional pictures at my picasa public site.

The Report has arrived

We went to Mass on Christmas Eve and arrived home to find a FedEx box with the report from Yale on the doorstep. What a Christmas present.

It's 14 pages, some of it regurgitation of information we provided for them, but in a report form. The other describes the results of the evaluation which consisted of the following procedures: Mullen Scales of Early Learning, The Vineland Adaptive Behavior Scales, Expanded Edition, and The Autism Diagnostic Observation Schedule Module 1 (ADOS-G).

Zach's motor skills and language skills are significantly delayed. According to the Mullen Procedure, his motor skills are operating at around a 20-month old level (Zach is 27 months) but may appear more delayed than his ability. Zach does not imitate much, thus he didn't attempt several of the tasks presented to him. The Vineland procedure indicated less of a delay, having Zach operating at a 23-month old. I feel that these areas will eventually flourish for him.

Zach's language skills area another story. According to the Mullen Procedure, his receptive language (what he understands of what is spoken to him) is operating at around an 8-month old level. His expressive, slightly better, at 15-months. The Vineland procedure indicated more of a delay, with his receptive once again at an 8-month level, and his expressive language at a 9-month level.

Zach's social behavioral asesesment, using the ADOS-G, seemed to emphasize some of his issues such as lack of eye contact, and of course language. But it also showed some very positive traits that Zach has - namely that he can be redirected and engaged. The report said that his performance during this part of the evaluation indicated that "Zach is ready to learn language and basic rules of social communicative exchanges...". My favorite part of the report is, of course, the description of my beautiful son as a"delightful little boy". And he is! What a blessing that is, and I appreciate it every day I have it, especially after reading stories of those with ASD children who display violent behaviors to others, and themselves.

The other notable in the report, is his tensing of his arms. This tensing usually consists of Zach stretching out of his arms, fanning his fingers, and shuddering. Sometimes a facial tensing also occurs. These behaviors do not appear linked to any particular activity, sometimes they occur with no obivious outside stressors. This is why we will be seeing a neurologist in a few weeks.

The recommendations are basically an intervention program for a child with an ASD - as opposed to a child with some basic delays. This includes speech language therapy (SLT), occupational therapy (OT), educational therapy, adaptive skills training, and social skills training with typical peers. 15-20 hours overall.

The report also listed resources, 13 to be exact to be used by those working with Zach. We currently have a few of them. I will likely list these at some point for others to puruse.

So there you have it. The report is here. We have something official, we are no longer neurotic parents, we have a path to follown and more importantly, we have a path we that those professionals who can help us make a difference can go down. Right now I am saying a prayer that it will lead us to the land of independence and happiness.

Merry Christmas!

So, yesterday we received a copy of the 100 day kit from Autism Speaks, an autism advocacy organization . Much of the information, we were already aware of. However, I still recommend for those with a new diagnosis to get a copy as a primer on what to do with a new diagnosis. Its a concise and easy read that offers suggestions and a road map for getting started with treatment. Also a good resource to photo copy out of when you want to relay information to loved ones who would like to help.

While at work, Zach played on the computer with his Babcia Morphet and Aunt Cindy who came into town for the holidays. Apparently, the screen saver came on the computer at some point, and Zach said to his Babcia "Oh -look at that." Cool cool cool.

Zach quickly adjusted to having his Grandma added into the house, and his Aunt Cindy too. We are just really sad that Uncle Mark won't be able to join us for Christmas - he was sick and unable to make the 7 hour drive. This has Sophie sad since she was excited about having her "new" Uncle Mark around to play with.

Today I contacted the Central New York Developmental Disabilities Services Office for an intake for services for Zach. I am not even sure what this is going to get him, but we will find out.

The problem right now is that everyone wants to see the evaluation report from Yale. I am guessing that we won't be receiving it until after the new year. Uugghh.

It appears that a diagnosis (or dx as I may refer to it) is so critical to getting him services.

We will get it. Push push push.

Very excited about Christmas and all the joy my children will have with their new presents and family parties. May everyone out there have a very
Merry Christmas!

Day one without him, can I get a bone?

Wow. Life seems so surreal lately. I kept on looking for him all day long. When I went to go get the mail, I began to call to Buddy like I usually do as he loved to run outside in the snow as I walked down the driveway. He did this just Saturday.

Steve and I discussed what's next. We both agreed - no pets for awhile. Steve is pretty wounded by this, too. What a kidney punch after all the other punches we've been taking lately. Nothing to kill us, just enough to make sure we really feel it.

We discussed our childhood pets, and Steve recalled that 2 years after his dog Shep passed, his folks came home with Rusty. He could still recall being angry at them, as he felt that there could be no replacement for Shep. This is why I love Steve, and why we belong together. Once we allow another soul to enter our heart, it can never be replaced, but there is always room to add more. So one day, there will be another dog, I am sure. He won't be Buddy. He won't mean the same to us, but he will be loved nonetheless. Someday.

Telling Sophie brought out a side of Steve I have never seen. Sophie didn't seem too upset though, unless you call asking if this meant she could have a kitty now as a means of dealing with her pain. Still, I know she is still processing it. She told her teacher at her Christmas party today, so obviously it triggered something. What does a four year old understand of these things - what do I understand of these things?

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Zach's class was cancelled today. Speech therapy and OT went so-so. However, he has begun what I believe to be some imitation. During his Saturday class at MyGym, he mimicked putting an item on his head and then "sneezing" (saying "achoo") and letting the item fall off as they do routinely iin circle time. Then, Sophie and I had a pom-pom fight, and he joined in throwing the puff balls around. Yeah yeah. Way to go Zach.

I believe he also accidentally let out an "up" when reaching for me in an effort to get me to pick him up. I have been working on this one what feels like forever. It wasn't repeated, but he did it without prompting - so I am pretty sure it is in there. Come on Zach - give me the Christmas present I desperately want.

Still no report from Yale. Steve called today. Apparently, the professor who did the evaluation was out of town. It might not be here until after the New Year. This is not what I expected or was told, and I am dissappointed. I really need to read what is in that darned report. In the meantime, I am reading "More Than Words" and another book that came last week: "Do Watch Listen Say" .

We are trying to get Zach setup for a school called Jowonio for the fall. Everybody with experience with kids with special needs is telling us this is the place to be for him. Well, 200 other people on the waiting list seem to think it is where their kids need to be, too. uugghh. I am just asking the guy upstairs to throw me a bone on this one.

Buddy Pics

Farewell my little boy

His name was Teddy - but everybody referred to him as Buddy, so sooner or later he became Buddy officially. He saw me through bad boyfriends, my father's death, my marriage, my master's degree, the birth of my two children. In fact, when in labor with Sophie, Steve slept, but Buddy stayed by my side as I timed my contractions. He asked for nothing but some love once in a while. We loved him immensely, because he did the same.

No more fences, no more leashes, no more pain my little boy. Say hello to Morgan and Rusty. I know they'll love having you there. We will miss you so much. Goobye.