Thank you all for sharing in the lives of our three amazing children- Mairead, Jack, and Ben. We hope you visit often!

Thursday, December 23, 2010

Merry Christmas to you all

The next two days are bound to be hectic, so I want to wish you all a very merry Christmas! We are so blessed and plan to enjoy every second of the next few days. We can't wait to see our kids wide eyed at a visit from Santa tomorrow night or at the presents under the tree on Saturday morning. We hope that they love being surrounded by family and friends for the next two days and that they always know that the people around them are the true gifts.

I am always emotional at Christmas, but usually in a good way. I think that the beauty of it and the kindness you see in people just touches me. Like, when you hear about homeless children writing to Santa and asking for a gift for their moms, or locally there is a couple who recently found out that they cannot have children so they made a huge dontation to Toys for Tots to help the children that don't have a Christmas gift.

Watching Mairead look at Christmas trees, lights, etc, with wonder is just so beautiful to me that I just can't help but tear up. Seeing my three kids sitting under the tree or eating gingerbread man cookies together... all those simple moments that make up a life are just so much more poignant this time of year.

The sad parts are there, too... we all think about the people we wish we could share these times with. We realize that we have so much in our lives but we wish we could share our children and our joy with those we have lost, and it's hard when we can't.

I think that all of us are touched by the emotions that come with this time of year, and I hope that everyone has a moment to stop and just breathe in the wonder of the season. Merry Christmas, everyone!

Tuesday, December 21, 2010

Neuropsychological Evaluation is complete

I don't have the scores/results yet but will hear about that in early January. Mairead is finished with the testing part, though, so that is good to get behind us. I like the doctor and I believe she is going to do her best to help us. She, too, is incredulous at the way the schools are handling our case and disregarding the input of medical professionals. She said, "And you've got some heavy hitters on your side. I mean, Dr. Rivkin (stroke specialist) is renowned for his work. I can't understand how they can do this."

Neither can I, lady.

Anyway, she understands my frustration and we even discussed whether giving Mairead an Autism Spectrum Diagnosis (ASD) 'label' would help. She said that she had some data that was consistent with an ASD diagnosis and she could hi-light that if that is what I wanted to do (obviously this would only be done in an effort to get the schools to provide more services). I said I didn't want to do that since 1- none of M's other specialists would support that diagnosis, and 2- I am not going to ask this woman to basically lie for us, and 3- if Mairead gets an ASD diagnosis and the schools offer services, I fear that they won't be the 'right' services. If she doesn't actually HAVE autism and they provide services to HELP with Autism, those services are really not geared toward her actual needs.

So, the doctor said that she sees a number of skills and a number of things that mask her skills. Her concerns are Mairead's poor attention to task, non-compliance (when tasks are difficult or if she doesn't understand, Mairead will not do them, tries to leave the room, whines, etc), and anxiety. She was pleased with Mairead's cognitive skills, though she admitted that those strong skills will 'hurt' us with the schools.

The anxiety thing really bothers me. Her developmental pedi did mention anxiety as a possible problem for Mairead, and it seems that he was right on. When she is in a 'pressure' filled situation (like this testing, a doctor's appt, etc) or challenged with something that she does not understand, or is in a threatening space (doctor's office, elevator, very small room, etc), she gets very anxious. Her pupils dialate, she clenches her left fist, she whines, she avoids eye contact, tries to leave the room, may throw a tantrum, etc.

What upsets me about this is that for a while, she didn't realize what 'pressure' was. She didn't 'get' that she didn't understand things. Her ignorance was my bliss because even though *I* knew she didn't get it and it made me sad, SHE didn't realize that there was a problem and she was happy. Now, it seems that she knows she doesn't understand. She has even started to say, "No. I can't" and then gets all sad looking and clams up. It's pretty sad to see your three year old having anxiety issues. I fear that this will only get worse, especially since she is not getting the help she needs.

When she is doing something she is good at and/or enjoys, she will sit and attend to task for very long periods of time. She laughs, makes eye contact, relaxes, etc. When she starts to get confused, you can SEE the anxiety build and then the avoidance starts. I fear for her self esteem as tasks (like school) get more and more difficult for her. And, Dave and I are teachers- it kills us to think that she will dislike or fear school, especially at such an early age.

Anyway, I meet with the neuropsychologist in January to see the full report/scores and talk about how to move forward. She said she is going to be careful about how she words her report and try to be flexible with any diagnoses that are attached to Mairead. I am guessing something about anxiety, something about attention, and something about language. Oh- and the neuropsych noted issues that should be dealt with through PT/OT as well. The poor kid has a laundry list of needs that are not being addressed.

On a much happier note, Mairead is so excited about Christmas. She doesn't really 'get' that Christmas really all happens on one day, or that Santa comes and brings presents, etc. She loves everything she has seen so far, though. The lights, trees, wreaths, Santa, snow (we finally saw some last night and today!), candy canes, etc. She is loving the season and we are having so much fun watching her enjoy this special time of year.

Last night, I heard my mom's car pull up and said, "Oh, Mairead. Someone's coming. Who is it? She didn't bat an eye and whispered, "Santa." Just wait until the big day on Saturday, kid!

Monday, December 20, 2010

Happy Birthday, Lily!

Today is Lily's first birthday! We are so lucky to have this little girl in our lives. Her parents are doing an amazing job. Lily is happy, funny, strong, and beautiful. Mairead adores her... well, we all do! Happy birthday, Lily. We love you!

One year ago...

It was snowing then, too, but a LOT more!