Heard from the neurologist

After stalking, I mean, politely making repeated phone calls to the neurologist's office, I finally have an update. It's not much, but it's a place to start.

He didn't have a lot to offer except that he does concur with the original neurologist about her having an ischemic attack with diffusions in the white matter. Bascially, a stroke. Yeah, I know, thanks. I talked to him about her delays, etc, and where to go from here, and he is going to schedule an MRI and recommends that we have her tested by a neuro-psychologist. I told him about the IEP mtg and what the school said, and he said, "I am shocked by that. I mean, what do they want?" He was truly puzzled that they would not offer her a spot in a pre-school. He asked me to have EI write a summary of their concerns and then forward that to him so that he can look at it and try to be of some help to us.

So, I am happy that we are moving forward with a new MRI. I mean, who knows what her brain looks like now? After we do that, maybe he will have more insight into what is going on with her and why she has such varying skills and challenges.

I am glad he gave the suggestion of the neuro-psychologist, too, since a few people (some of you included) mentioned that as an option. He also recommended a test that he would ask the schools to do, and encouraged us to seek an Independent Educational Evaluation (all things I was already going to do, but it helped a lot to hear him say all of the things I was already thinking of).

I feel better, I guess, because I at least feel like he wants to help us and that SOMETHING is going to get done (MRI, neuro-psych, etc).

I am looking at options within school dept to find out how to get her re-evaluated. I'm not sure how things will go there since today was the last day of school, and many staff members do not work over the summer.

So, that's where we stand, I guess. I will probably try to find a developmental pediatrician and at least get on a wait list or whatever so that I have that option down the road.

I have to say that I have been SO overwhelmed with the support everyone has offered. We have heard from so many of you with ideas, suggestions, thoughts, prayers, or whatever you could offer. It really does help us to deal with all of this. I also love that we have so many friends and family members who just refuse to take 'no' for an answer! I guess no one ever told any of you that 'you can't fight city hall...'.

In other news, we had to skip swimming tonight because Mairead has a mild ear infection. This is only the second one she has ever had, and it is pretty mild. We just didn't want to make things worse by taking her swimming today. From the looks of the weather report, she should have plenty of chances to swim this weekend, anyway!

We did get to the playground today since no one had therapy and we did not have to save our energy for swimming. We usually go on Fridays, but this Friday is supposed to be 87 degrees, and that is a bit too hot for the playground!

These pictures were taken with my cell phone so they are not that great. The first one shows a new trick that Mairead learned from a certain aunt of hers... hmmm... who could that be? Drinking out of the hose is a new talent that she has.


Jack and Ben are happy to share in the sandbox (Ben is in blue)...


Or on the swings (Ben in blue again)! They are just the right size to fit in the swing together. It is pretty damn cute, I have to say. Also, they get a little nervous on the swing alone, especially Jack, but he loved being in there with Ben!


The boys are doing really well. Jack is saying SO many words! Yesterday, he started saying, "Me down" when he is all finished eating. He is walking pretty much all the time now, which is great. Ben is just about the strongest 15 mos old ever, and has amazing balance. He can climb pretty much anything (not my favorite skill of his) and has excellent control on any kind of surface.

Our walk yesterday was just about the best thing ever because a garbage truck drove right next to us while picking up the recycling. AND, the man beeped the horn and waved at us. Jack just kept pointing and saying, "I see car, I see car." Ben was waving and yelling, "Vrmmm, vrmm," and Mairead very clearly said, "a garbage truck." Yep, pretty exciting stuff!

Hippotherapy

Though the morning was incredibly disappointing, the afternoon today was a joy. Mairead had her first session of hippotherapy at Ironstone Farm in Andover. I was a little anxious about how she might handle getting on a horse for the first time, but I had nothing to worry about since she absolutely loved it. She didn't hesitate for a second and climbed right up to get on the horse. She wasn't afraid at all and she did so well. The therapists and the handlers were laughing because SHE was laughing so much. She followed directions really well and did a great job with the tasks they were giving her. When the therapist told her it was time to be all done, she said, "No, more." It was so fun to watch her having such a good time. Her laughter and smile are truly infectious.

The quality of the video is not great since we were in a dark barn and she was kind of far away from me, but you can see how much fun she is having.

IEP Meeting results- not good news

I just returned from Mairead's Team Meeting to discuss her IEP. Basically, it was incredibly disappointing. The team determined that Mairead's only "disability" is in communication, and decided that twice a week, she can receive speech therapy for 30 minutes in a small group with no typical models. They do not feel that she needs pre-school at this time. I was devastated and it was all I could do not to break down because we all know how badly she needs this.

The staff from Early Intervention was there and they were wonderful. They did everything they could, as did I, to make a case for Mairead needing pre-school, but the team from the schools seemed pretty wrapped up in her test scores which put her in the 'normal range.' They basically wanted her to either have an identified disability, or to test at a year or more behind in her skill level.

Going into this process, I expressed concern to the team that because Mairead's skills are so inconsistent and all over the map, that her weaknesses would not be so obvious, and that we would have a hard time meeting her needs. That is exactly what happened. They saw all of the things that she does well, and decided that her only need is speech. They focused on everything she did well. What they didn't do was ask her to tell them her name. Because she can't do that. She can't tell you how old she is or where her Daddy goes every day. She can't tell you what she had for breakfast, or if she is tired, or cold, or even hurt. Is THAT in the normal range? I doubt it.

I understand that there are laws governing the creation and administration of IEPs, but I also know that they are supposed to actually value the input of the parent and the reports from Early Intervention. They basically dismissed anything that we had to say about how much help Mairead needs. They 'weclomed' us to enroll her in private preschool and to come back at age 4 when they would 'welcome' her to the public schools. Well, private preschool costs a lot of money, and they don't have a staff of Speech Pathologists, Physical Therapists, or developmental specialists. When she is 'welcomed' back at age 4, she will not be functioning at the age of other 4 year olds. I fear for her safety, her self esteem, and the impact of her school experience.

We plan to appeal the IEP (though that will take forever since school gets out this week) and we hope to get more information from her doctors that may help her. 60 minutes of speech per week is not NEARLY enough to help her. She is functioning as a two year old even WITH 6 months of help from EI for over 4 hours per week. Not to mention everything that Dave and I do at home. What is going to happen when those services are pulled?

As you can imagine, we are incredibly frustrated and upset... again. We are doing everything 'right' to try to help our little girl, and with the exception of the EI staff, the professionals we are depending on keep disappointing us. We are still waiting to hear from the neurologist, though he did leave me a message this morning so I guess he has not forgotten about us. I returned the call as soon as I could, but he was not available. Sigh.

Anyway, thanks to all of you who were thinking of us and praying for us. I wish I had better news. I will update you with any news from the neurologist.

Day at the Donahue's

Yesterday, the whole family was invited to a BBQ at our friends, the Donahues, house. I have been friends with Josh since 7th grade, and now my brother is going to marry his sister. How cool is that? Through the years, we have become friends with Josh's parents, siblings, wife, and then daughter. Ailish is just four months younger than Mairead, so we hope they will be life-long friends, too!

We had a great time yesterday and only wish we could have stayed longer. Josh and Becky did a great job hosting and it was fun to see so many friends. Both Josh and Becky's siblings and parents are incredibly nice, too, so we felt so welcome.

Josh's mom helped Ben try out the motorcycle.


Brady (our friend who is just 6 weeks older than my boys) mastered the motorcycle with ease.


Jack found someone who was willing to rock and cuddle him, so he was quite content. Thanks, Becky!


Ailish was so good about sharing her home and her toys with all of the other kids. She showed them all how it was done (with help from her uncle)!

Mairead was very serious about collecting horseshoes. She did really well. It was a new situation with a lot of kids, and she had a great time running and playing with everyone.

Ben found a frisbee. Why is it that I can really picture him being a frisbee player?

Jack was checking out the whole situation with that serious look he has.

Their outfits, by the way, were gifts from Grandma Dorothy. So cute!

We had to head home since all three were exhausted by the fesitivities. We literally had to fight to keep the boys awake until 6:30, and Mairead went to bed an hour early, too. They just had too much fun!

Ben had his nightcap and hit the hay!

Thanks to the Donahues for hosting- we really had a nice day with our family and yours. And thanks to everyone who helped keep my kids from falling off of the deck, climbing into the pool, etc. I loved seeing everyone's families and how well everyone is doing. It's so amazing and so fun to see my high school friends as moms and dads now. I also heard from a few people that read our blog and I love it! I'm so glad that the adventures (and misadventures) of our kids can brighten your day!