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

Friday, January 7, 2011

So hot right now...

The files are IN SIDE the computer...

Wednesday, January 5, 2011

Thinking Chairs

A big thank you to Grandma and Grandpa for the boys’ Christmas gifts- their very own chairs! Jack calls his a ‘thinking’ chair (thank you, Steve from Blues Clues). Poor Grandma ordered them SO long ago and because of a shipping mix up, we are only now able to enjoy them. Mairead has had her chair for a long time, and now no one has to share—they can all relax together! The boys are in the ‘wrong’ chairs because Jack decided he wanted the blue one. It’s funny, though, as soon as the blue one arrived, Ben ran to it and tried to drag Jack out of it. Somehow, he knew that the blue one was his! It does have his name on it… maybe he can secretly read. Anyway, everyone was able to relax and have a bedtime snack in his or her own comfy chair.

The bath pictures are from last night. Since we had all had such a busy day, we saved time by throwing all three kids in at once. We probably won’t be able to do this for long since one particular child is giant, but it’s really cute while it lasts!

The pictures of the boys are cell phone pictures of their activities at Early Intervention yesterday. They were having a lot of fun in their new group! Jack is in stripes, by the way.

Today I called the schools to inform them that we do have the results from the neuropsychological evaluation, and that we would be using them to move forward with mediation. They offered to reconvene the team to discuss the results, but I respectfully declined. This whole process has been going on for nine months now and they have not budged an inch. They have repeatedly disregarded recommendations from medical professionals and I fear that another meeting will be more of the same. I am tired of wasting time- Mairead has already gone without services (save for an hour of speech per week and the private OT we pay for) since August 1, and each day that goes by is a missed opportunity for her. I am waiting for a call back from the mediator and hopefully this process can move along with more immediate and positive results. I hope we are doing the right thing. I am just exasperated with the whole thing and this seems the best way to make something happen. Let’s just hope and pray that the mediator sees things as we do, and takes into account the specific and numerous recommendations of experienced and informed medical professionals.

Today, we met a new friend for our kids… a new babysitter! Stephanie is the daughter of a friend of my dad and she came today to meet the kids and to help out while I picked up Mairead at school. The kids seemed to really like her right away, so that was great! We hope to have Stephanie help us when there are family events, doctor’s appointments, or for a certain wedding that is coming up in July! She seems great and we are really happy to be adding her to the team of people who seem to be helping to raise our kiddos.
Tomorrow is another school day for Mairead and Stephanie will be back to get to know the kids better. I have a board meeting with my MoM group tomorrow night, and on Friday night, I have plans to go to dinner with two of my BFFs. Thanks to Dave for taking care of the kids so I can have some time off! Not sure what the weekend will bring since we are expecting another snow storm, but someone is having a pretty big birthday on Sunday...
Thanks for reading!

Tuesday, January 4, 2011

Busy Day- Neuropsych results, new school, old stomping grounds

First, thanks to everyone for texts, emails, and facebook messages wishing us good luck today-- there was a lot going on!

Today was packed with activities-- first on the agenda was my appointment with Mairead's neuropsychologist at 9am in Boston. I had a great meeting with the doctor- I really like her a lot. She totally shares my frustration with the schools- she was getting really indignant about how they just can't ignore her needs and they HAVE to see that this child needs and deserves help and 'I don't know what's wrong with these people.' It is so gratifying to know that I am not crazy and that what I see with Mairead is what professionals see, too. So, definitely a positive experience.

First and foremost, it is not Autism Spectrum Disorder (ASD). This is helpful in that it put my mind to rest since I still wonder sometimes, and it is helpful in that now all of the professionals who have seen her have ruled it out, and now the test scores support that. She has some characteristics that a child with ASD might exhibit, but not enough to give her a diagnosis. And, she has characteristics that very specifically contradict an ASD diagnosis. I am happy to have this ruled out, but I know that ASD often equals more services, so that part kind of stinks, but I don't want her to be getting therapy or teaching specific to ASD if that is not even what she has.

For you teacher/psychology/medical types-- the doctor administered:
Stressed Gaits
DAP (Draw a Person)
Pediatric Questionnaire

She gave the diagnoses:
Cognitive Disorder-NOS
Communication Disorder- NOS
Possible Anxiety Disorder- NOS

The bad news is that Mairead's scores are all at about the 50th percentile with the exception of her general vocabulary which was at the 86th percentile. I am positive that the schools will tell me she is perfectly average because of that 50th percentile. However, scores in the individual categories are all over the map. Visual stuff puts her well advanced, but then verbal directions, etc, put her significantly below age level. The neuropsychologist stressed in her report that this variation is indicative of a child with some excellent skills but some real problems with interpretation and application.

The doctor thinks Mairead is very intelligent because she demonstrates a significant impairment in communication, but also demonstrates a great ability to compensate for her deficits. Many of her scores put her 'at expected level' which is not going to help with the schools, though.

The report is awesome. She was careful to use the results carefully and couch things very specifically so as to advocate for Mairead and recommend an integrated preschool, PT, OT, Speech, and further evaluation. Also, there were SO many sentences in the report that I read and thought, "Yup, that is 100% Mairead." The kid in this report is exactly the kid I see on a day to day basis, and that really made me feel like what I see every day is now on paper and can be helpful to us. She also wrote in the report that Mairead is lucky to have a "very aware and very committed mother." Maybe she meant to say that I SHOULD BE committed... lol. Seriously though, it was nice to see that.

I felt really positive after leaving the appt (once I got out of the garage-more on that later). I did not feel optimistic about the school part since I fear they will look ONLY at the scores and not at the recommendations that the doctor was so great about, but I felt VERY positive about having a professional who 100% 'gets' what is going on with Mairead. It helps me feel sane since she sees what I see.

So, Iwas leaving the doctor's office when we heard a ton of sirens outside. The office is in the Longwood Medical area, so sirens are pretty common, but there were a lot of them. The doctor said, "Oh, I hope it's nothing serious." I told her that at my last appt with her, I went out to the garage and the police/fire/EMS were there because there was an accident IN the garage. She said, "Oh, boy! I hope you aren't stuck this time!"

I go outside and there are a MILLION emergency vehicles. The area is crawling with fireman, police, pedestrians, etc. I go to my car (traffic on the street was still moving at the time) and since I am on the 4th level I can see that the building across the street has smoke billowing out a high story window. Kind of scary. So I think, 'I had better get the hell out of here before they close the garage.' Get to the bottom of the ramp and guess what? They closed the garage. I was first in line to leave but had to wait about 35 minutes. Annoying, but hey, a building was on fire!

I was SO glad I didn't have any kids with me for 35 minutes in a parked car, although Jack and Ben would have LOVED the fire trucks. I was also SO thankful I wasn't trying to get to an appt with a specialist or something- I am sure many people were screwed in the mess. Never a dull moment with us!

When I got home, it was just about time to start getting everyone ready for new schools. Mairead had her first real day at her new school (we miss Miss Joanne already) and the boys and I started a parent-child group at the Early Intervention Center where Mairead had such great experiences. It was nice to be back there-- we were even in Mairead's old classroom for part of the day.

It was a lot of fun. The boys are the 'typically developing models' for the group-- totally a role reversal for me since I am so used to being involved in groups, etc, with Mairead who is not the typical kid.

If you have a local EI center that does playgroups, I highly recommend seeing if they have a spot for your typically developing child. The activities are fun and educational, it's free, and it's a nice thing to do with your toddlers who are not old enough for preschool, etc. You can just call the main number and ask if they have a playgroup coordinator, and that person can give you more info about having your child join a group as a 'community child.'

I feel a little guilty that I enjoyed having my kids be the models and not the ones who need modeling. At the same time, I knew exactly how the other moms felt-- they kept saying things like, "Wow, your boys talk so much. Wow, they are so smart.... my Julia doesn't do that yet," etc. One mom started asking the teacher all these questions about what her daughter 'should' be doing in terms of speech, etc, and I could tell that she was kind of freaked out by what my kids were saying and what her daughter is not. My heart went out to her since I have been in her shoes for a long time with Mairead. I am not supposed to let on that my kids are the typical kids, but it was probably obvious. As time goes on, maybe I can share a little bit about our experiences, but I only want to do so if it's helpful.

I really felt for the moms- I know how they feel and it must be even harder when you don't have the education to even know what your kid needs or how to help him/her get help. I hope that Jack, Ben, and I can be of some help to them.

Mairead was happy to go to her new school. She seemed a little hesitant to let me leave, but she did remember that they have a gym there and she loved that part, so she was ok with it. HUGE thanks to my sister, Jen, for picking her up while I was at playgroup with the boys. Because I didn't pick her up, I don't know how her day went, but she seemed to be in a great mood the rest of the day. I should get some more details tomorrow about that. When Jen arrived to pick her up, the teacher asked for an ID. All Jen had with her was her DCF ID, but when she got a funny look, she made sure to tell the teacher she was my sister, not our caseworker.

That was pretty much it for the day (well, except for dinner, baths, stories, Blues Clues, teeth brushing and bed time!).

Thanks for reading-- today was busy and the drive into Boston was full of anxiety since I was so unsure of what the reports would say, but we had a great day (it was a super wa-ay... you parents know what I am talking about!).

Monday, January 3, 2011

The end of 2010

Believe it or not, I am not going to wax philosophical about the end of a year, resolutions, or anything dramatic. I am just going to say that 2010 was an incredibly difficult year for us, and we are thankful that all of you have supported us through it. We hope that 2011 brings us happiness and good health. We hope that we will be able to get Mairead the services she needs, and that things can start looking up for her. We know that we are blessed to have all that we do, and we look forward to closing the books on a year that has been very draining, and starting a year that includes so much to look forward to.

We ended the year with a great visit from Grandma, Aunt Ryane, and Rachael. The kids were really excited to see everyone and had a great time running around with their big cousin. Everyone from NY was incredibly generous with Christmas gifts and the kids had a great time opening and playing with their new toys.

Jack tested out the new see-saw (built for THREE!) from Aunt Ry and Uncle Dave.
Jack is Batman, by the way...

and Ben is Superman.

Mairead is a master decorator. The girls had a lot of fun decorating these snowman cupcakes. No sprinkle was spared as Mairead created her masterpiece.

Rachael made some fantastic cupcake creations!

I wish that I had more time to take more pictures during these visits- they just go by too quickly! Thanks to our NY family for making the trip out- it was great to spend some time together!
We started 2011 with a playdate at the Estees' house. It had been WAY too long since we had gotten together so I packed the kids into the van and made the drive down. Jaime and Connor were great hosts as we invaded the place. We used to spend a ton of time there when we lived on the South Shore, and I definitely think Mairead remembered being there. She made herself right at home. She especially liked seeing their dog, Bailey, again, though she insisted on calling him 'Barkley.'

Connor has a pretty awesome train table and all three kids enjoyed playing with it. The boys may end up with one in March when they celebrate their birthday. Can you believe they will be TWO in two months? I can't!

Ben kind of looks like King Kong about to topple the city.

Mairead and Connor have known each other since Connor was less than 24 hours old- we think that friendship is pretty special!

Our favorite superheroes!

Tomorrow is a big day for all of us. Mairead starts her new school and the boys and I start a new parent-child playgroup. The group is run through the same Early Intervention center from which the kids received their services. It's a playgroup that includes 8 kids who receive EI services and 2 kids from the community to serve as the typical models-- those models are the boys! It's a lot of pressure- hope we can be a good example! Thanks to my sister, Jen, who is going to pick up Mairead from school on Tuesdays so that I can be with the boys at group. You know how they say, "It takes a village to raise a child"? Well, it takes a pretty great village to raise three and we are thankful for all of the support that we have from our family and friends.
Before school and playgroup, I will be going in to Boston to meet with the neuropsychologist to discuss Mairead's test results and the doctor's interpretation of those results. I am anxious about it, of course. I already know that Mairead is not a neurotypical child and that she is facing some challenges, but it's always hard to hear someone else tell me that, or to see scores in black and white that show me what a tough road she has ahead. I know that whatever label or diagnosis is attached to her, Mairead is the same amazing kid with that label that she ever was without it. We are hoping that whatever the doctor says will be helpful in our battle with the schools. Here's hoping!