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!

Mostly Mairead

Recently, Mairead has taken a new interest in baby dolls. For a long time, she really didn't care about them. Maybe she figured that we had enough babies around here. Now, though, she is attached to her baby and does a great job caring for it. She feeds the baby and gives her a pacifier, takes her for walks, and gives her kisses on the top of her head. Talk about melt-your-heart-cute, huh? She also takes the baby in the tub with her and gives her a bath. This is really great to see since expanding her play and caring for a baby doll means that she is developing more and engaging in more creative activities. We are so happy to see her doing this and it's so fun to watch her little mind working while she searches for a blanket for the baby or decides what the baby is going to do next.

Jack has learned to say, "baby" and tries to follow Mairead around while she has the doll. Ben follows her around, too, with mixed reviews from her!

I was actually taking a picture of Jack when she insisted that I take this one of her. She just kept saying, "Cheese!!" until I took it! I like it because I think she looks pretty, but I dislike it because she looks too old!

Jack just decided to have his snack in this little chair the other day. He is having chips. Both babies can now say, "Chips,' and Jack says, "more chips." All three of them LOVE to use the sign for "more"! It is definitely the most commonly used sign in our house.

I did take the 'real' camera to swim lessons this week. Things went MUCH better. Dave and I planned better, for one thing, and got there just about 5 minutes before the lesson started, so Mairead didn't have to wait long to get in the water. Also, we took her for a walk around the pool a couple of times and asked her to find things (Do you see a clock? Where is it?) and this occupied her enough to prevent her from throwing a fit because she couldn't get in.

She seems to have a good respect for the pool. She does not try to jump in without us or run around the pool area, which is good. She LOVES the water. I mean, giggles and screams with delight pretty much the entire time she is there. She is infectious and the other kids and moms laugh with her, too. I can't tell you how great it makes me feel to see her so incredibly happy.

She is getting pretty good, too! She has no problem going underwater and likes to jump off the sides into Daddy's arms. Poor Dave gets such a workout- she is the biggest kid in her group and by far the heaviest. All of the other parents are hoisting kids who weigh 20, maybe 30lbs at most, and Dave is tossing around Mairead at 38lbs!

Ok, this one looks a little creepy...

Yeah, she likes to drink the water and stick out her tongue while swimming. Sometimes, when Dave dunks her under, she is laughing so much that she doesn't close her mouth. Doesn't bother her a bit, though!

The boys had their 15 mos appointment today and the pediatrician thinks they look great. Jack is 22lbs 8 oz, and Ben is 22lbs 15 oz. Ben is taller by a half inch at 30 1/2 inches tall. They are still just in the 25th percentile for height and weight, but they are healthy and that is what matters. It's so amazing that they are so close in height and weight- they are just little bookends (physically, at least, definitely not in terms of personality!). They each had three shots. If you have ever taken one baby or toddler for shots, you can imagine the misery that is taking two. I can't really comfort anyone since I have to just move on to the next baby and then dress them and get them out of there. They are a little cranky tonight, but hopefully they will get a good night's sleep and feel better tomorrow.

Our next big events are both on Monday. One is Mairead's IEP meeting on Monday morning, at which point we learn what (if any) services the schools will provide for her in the fall. I am very anxious about it because she needs this so much, and I am just hoping they will provide what she needs. If not, we will have to look into private preschool and private therapies. Please say a prayer for us- we need it!

On Monday afternoon, Mairead will have her first hippotherapy appointment. I hope she loves it. If she doesn't, we're all in trouble... mostly the poor horse. I think she will be hesitant at first, but she loves animals and being outside, so I think this will be great for her. I'm not sure if they allow you to take pictures because the flash may be disruptive, but if I can, I will!

Pool School, a Pretty Dress, and Other Updates

On Wednesday, we took Mairead for her first swim lesson. Since we will be spending a lot of time at the pool this summer, we wanted to make sure she was comfortable in the water. Dave was great and volunteered to be the one to get wet. When we first got there, I thought we were headed for disaster. The first class had not yet finished, and we had to wait in the pool area for our turn. Of course, Mairead wanted to explore the very slippery and crowded pool area, or to just get in the water. Neither of those options were available to her, so she got incredibly frustrated and threw a tantrum. She just couldn't understand why we we would bring her to this pool and then not let her get in. With all of her communication and other issues, there was no way for me to make her understand what was happening, and she continued to get more and more upset.

Those moments make me even more frustrated with the fact that we are getting nowhere with neurology. Mairead was genuinely upset and though she DID over-react and scream way more than was necessary, she just didn't understand, and I could see her frustration growing with every second. Every parent in the place is staring at us and probably wondering, 'what's wrong with that kid?' It's not like she has a sign on her forehead that tells everyone that she has a neurological problem that has created cognitive deficeits, and it's not like I am going around to tell everyone that. But those moments are hard for us because when she gets frustrated like that and we can't help her or make her understand, it just kills us.

One mother came up to me after Mairead was happily swimming in the pool and said, "Don't worry- we've all been there." I thanked her for being so sympathetic and did tell her a little about how Mairead has some trouble understanding new situations. She was incredibly nice and reassured me that every kid has some special needs that make things tough on parents, and that all we can do is go with the flow. I was so thankful for her- she came to me just at the right time and really made me feel better. This was the day after our failed visit to the neurologist, so I was even more frustrated wtih things than I would have been on any other day. Thank God that there are kind people in the world who still go out of their way to help others.

These pictures were taken with my cell phone so they are not the best quality-- I will take the 'good' camera next time. Once she was in the water, she LOVED it. She didn't want to leave. These swim lessons are so great for her muscle tone and strength, her self confidence, and just for fun time with Daddy!


We hope to figure out a way to bring the twins, too, but with just one kid, it seems to be a two-man operation, so we may have to bring one twin at a time or bring in reinforcements!


Today, we went to a graduation party for my cousin, Joe (congrats, Joe!) and Mairead wore a new dress that was a gift from Jimmy and Jessica. The picture doesn't even do her justice- she looked absolutely adorable.

Mairead is learning to use more words and phrases all the time, and is getting much better at verbalizing what she wants. This is great news for us since she is less frustrated and more engaged. She is starting to use this against us, though. For example- she can have one cookie after dinner, and to get it, she says, "I want cookie please." The other day, I asked, "what do you want?" She replied, "I want two cookies, please." Smart cookie, huh?

I have to tell you how proud of myself I was on Friday. Dave left for work at 6am and had plans after work, so he didn't get home until almost midnight. This meant that I did the entire with the kids 100% on my own. With three under three, 3 was my number for the day! I...

did all diapers and dressing for 3 kids
prepared, served, and cleaned up after 3 meals (one of which was spaghetti so I think I get extra points for that)
took 3 kids to the playground
remembered to bring those same 3 kids home from the playground
got 3 kids to nap at the same time
emptied 3 diaper genies (yup, 3, and we empty all of them at least 2x per week)
gave 3 kids baths
got 3 kids to bed

I also worked on my online class and picked up around the house a bit. It was exhausting!


Now that I have impressed you, I will tell about the things that I am not so proud of that went on Thursday... all in the span of about 8 minutes.

I brought a big bag of laundry down and dumped it into the already running washing machine when I heard something thud against the tank. At that point, I remembered that I had stuck the video monitor into the bag to carry it downstairs since I had a baby in my hands. Yeah. I threw the monitor in the wash. It was submerged. I am not holding out a lot of hope for it. Goodbye, $150.

I then walked upstairs to where the boys were playing in the den. There, they have a little table that plays music, says letters, numbers, etc. It is about a foot tall. Aaaaannnnd, Ben was standing on top of it and dancing. He had managed to pull himself up on top of it even though it was in the center of the room and there was no furniture, etc, to grab on to. I grabbed him and brought him up for his nap. When I came back down to get Jack, I found him pulling tufts of insulation out from a doorframe that is a work in progress. We are a comedy of errors pretty much 24/7.

Jack is walking a lot more and is doing great. He is trying to keep up with his brother and sister. He is also using a lot of words and phrases like, "where's the bird?', and "go bye bye?" He still LOVES cars and trucks. It was a pretty exciting day on Friday when the Guziejka's landscaping company (friends of the family) was working across the street. They had ride on lawnmowers, a bobcat and all kinds of exciting equipment. I had to put one baby in each kitchen window while they ate lunch so that they could watch the excitement. The boys were clapping for the Guziejkas and when they left, Jack was signing, 'more, 'more.'


And Ben... oh, Ben. Ben has become a climber. Of everything. Coffee tables, toys, furniture, whatever he can find. He is remarkably strong and has great balance. Today, he found the car keys and was waving them around yelling, "Bye bye! Bye bye!"

I usually play music for the kids during meals and in the car. The boys' favorite song right now is Safety Dance... the Glee version. They bob their little heads to it while eating. Super cute! Mairead likes to request "more Gaga music" since her favorite song is 'Bad Romance' by Lady Gaga, also the Glee cast version.

Thanks for reading- we have been busy, as always, but we are certainly having our share of fun!

Mother's Day Do-Over

It is well documented on this blog that we like to celebrate our holidays pretty much whenever we feel like it. The latest 'Fake' Holiday is Mother's Day. This one wasn't really our fault- Nana was still in the hospital and was very sick for Mother's Day, so we pushed back the celebration until everyone could enjoy it.

We had a very low key evening with just the 10 of us (like the tv show) and our kids, some food, drinks, and time with the little ones. We hung out on the porch for drinks and appetizers and to enjoy the beautiful weather.


Can you believe how big Lily is getting? On Friday night, Dave and I took our three kids AND Lily out for a walk. The neighbors were probably thinking, "they had another one? What are they, nuts?"


As usual, Jen and Mairead found time for shenanigans, this time in the form of paper boxes.

Mairead LOVES Emmett. In fact, if Brian comes to the house without Emmett or Christin, Mairead gets upset. She had a great time chasing him around the yard. Or he chased her... one of those...

Aaaaannnd, here are my sons in the recycling bin. Have I mentioned how much they love recycling? They will fight to the death over an empty milk jug. It is unbelievable. A few weeks ago, we went to visit Dave at school. We were in his classroom for five minutes when Ben found and explored the recycling bin. If one boy has a coke bottle, I have to make sure to give the other a juice bottle so that no one is left out. I really can't get over their love of garbage.

Katie and Steve brought the Margarator over to help with the festivities.

Here's Ben after eating ONE Oreo. Nice.

Quality time with Daddy.

Ok, now for the best part. Katie and Steve brought over the Margarator so that we could make margaritas. Mairead was 'reading' the box and pointed out all of the letters. I told her that it spelled 'margarita'...

Hey, we are teaching her to read and to spell... don't judge us...