A Brennan Update

I realize an update on Brennan is long overdue. Brennan is 3 1/2 years old now and has started his first full year of preschool. Here he is on his first (rainy) day of preschool:

He is happy going to school, happy coming home and is learning new things all of the time. He's walking independently which is wonderful, but also tiring (for me - apparently not for him!). He can say so many words now and only signs when I can't understand what he's saying. He puts together three and four word sentences and is constantly adding new words to his vocabulary. He talks, and talks, and talks, and talks.....from the moment he wakes until he goes to bed. We recently converted his crib into a toddler bed and he's doing great with it. We've also started potty training though haven't made the full commitment to it yet. But, he definitely "gets it" which is encouraging. He continues to amaze me in so many ways.

A Couple of Things

With the change of seasons here and winter just around the corner, I wanted to share two products that were great for those fall and winter colds during Brennan's first couple of years. The first is a "NoseFrida." When I heard about it, I thought to myself that I would NEVER buy or use something like that. Read the description and you'll see why. But, after several moms of kids with Down syndrome raved about it, I figured I'd give it a try. And I was SO happy that I did. It helped clear out his tiny little nose in a way that nothing else could.

The second is an Exergen Temporal Scanner. I wish I would have had this when my older kids were little. It is by far the easiest way to take a child's temperature. I use it for all four of my kids, but its especially great for little ones who may not like the under the arm method. You can even check their temperature when they're sleeping if you need to.

New Down Syndrome Studies

Yesterday, my sister forwarded an article to me about finding from recent studies that were conducted regarding Down syndrome. After reading the article, I responded to my sister by saying that I wish the pediatrician that told us about Brennan's diagnosis would have been able to tell us the finding from this report instead of the doom and gloom he presented to us. The studies found that "the vast majority of parents said they have a more positive outlook on life because of their child with Down syndrome. And, nearly 90 percent of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability." Additionally, "nearly all of the survey respondents with Down syndrome said they were happy with their lives, themselves and their appearance. Only 4 percent said they felt sad about their life." And I would say, from my experience so far, that this is truly the case. When I've attended the National Down Syndrome Congress conventions, the thousands of attendees are not getting together to boo-hoo about their lives, but rather to celebrate.

The studies are being printed in the American Journal of Medical Genetics. My hope is that geneticists, pediatricians and obstetricians will include the findings from these studies to parents who are just learning that their child has Down syndrome, offering a real-life and not just medical view of the diagnosis.

How's Your News?

"How's Your News" was a show that aired on MTV a couple of years ago. It was a documentary style news show hosted by people with disabilities which showed them interviewing various celebrities and politicians. If you haven't seen it before, you can find some of the episodes here. I honestly smiled my way though each episode. One of my favorite reporters was Jeremy Vest. Jeremy seemed like the most genuine person I had ever seen who was always both honest and sincere. Recently, the How's Your News team posted an article about him on facebook and I quickly followed the link to read it. The article was written by Jeremy's father who described Jeremy exactly as I had seen him on the show. One line that stood out to me was when he was describing his sons diagnosis - he said, " Jeremy has Williams Syndrome which causes some cognitive difficulties, but at the same time imbues him with some splendid qualities and enormous talent." I just loved that description and think it applies to so many with special needs.
Happy Weekend!

Starting School & Turning Three!!

Brennan turned 3 almost two months ago. We had my sister and her family over for pancakes to celebrate.

And the day after he turned 3, he had his first day of preschool. He walked happily into school, saying "hello" to everyone he saw.

The a few weeks later, when my Mom got home from her time in Florida, we had another celebration for Brennan's birthday with the most adorable sailboat cake that my Mom and Tanner made.

The hardest part about Brennan turning 3 was saying goodbye to his wonderful therapists. They have all been such a huge source of help and encouragement over the past 3 years. Luckily, his preschool teachers and aide are also wonderful. He is always excited to go to school and asks for his backpack and walker as soon as his brothers and sisters start getting ready for school. He seems to be adding new words to his vocabulary almost daily. He has even started learning the names of his classmates and greets them by name as we walk into and out of the school. He is also taking steps independently, increasing the number of steps he can take little by little. It is exciting to see the progress he's making and also to see how proud he is of himself!

Getting Ready for School

We are nearing a time I had both dreaded and looked forward to since Brennan was born......his third birthday. Along with his third birthday comes saying goodbye to the wonderful therapists that have helped guide us through the past three years, and hello to school and not having Brennan as my constant companion. During the last couple of months, Brennan has had evaluations by each of the therapists at our public school so they can assess his needs coming into school, evaluations by his early intervention center in order to write their final report, a visit to the Down Syndrome Clinic at Children's Hospital, and an assessment by the Augmentative Communication Department at Children's Hospital. All the while, I've been reading and talking to other parents to ready myself for his Individualized Education Program (IEP) meeting.

Evaluations:

Brennan's evaluations from his early intervention center and the public school had very similar results. He has not had formal evaluations since he was about a year old since I didn't see any real benefit to them. I remember when Brennan was first born and I'd read on other blogs about kids and the assignment of developmental age to their abilities and thinking how hard it must be to see that as a parent. However, that ended up not being the case for me at all. I realize exactly where Brennan is developmentally and am so incredibly proud of him. He has learned so much and come so far in the past three years.

So, here's the breakdown:

Fine Motor: 23 months

Cognition: 18 months

Receptive Language: 20 months

Expressive Language: 16 months

Gross Motor: 11 months

Social Emotional: 29 months

Self-Care: 23 months

Down Syndrome Clinic:

At Brennan's annual visit to the Down Syndrome Clinic, he saw a pediatrician, physical therapist, dentist, nutritionist and audiologist. I like going to the clinic to get a second opinion on what we're doing with Brennan. Basically, they all agreed that he's doing great and had a few suggestions going forward. The pediatrician suggested he see an opthamologist this year, get another celiac test, use a total communication approach in school (verbal, sign and pictures) and that I send a book of Brennan's signs in to school with him. The physical therapist suggested scheduling an appointment with an orthopedist and also had a couple of suggestions of what to include in his IEP. The dentist said his teeth looked healthy and suggested wiping his mouth with a cloth after brushing (since he's not spitting after brushing yet). The nutritionist suggested adding a multi-vitamin and said otherwise his diet sounded well balanced. And lastly, he got a clean report from the audiologist.

Augmentative Communication Evaluation:

I took Brennan to see and augmentative communication specialist so they could suggest the best method of communication for Brennan. He currently uses sign language as his primary means of communication. As his family, we understand all of his signs. However, many of them are approximations or slightly different than the actual sign - so my concern is that even though his teachers will know sign language, they may not understand his signs. So, at this evaluation Brennan was able to try various communication devices. He took to them very quickly and was able to navigate them to ask for what he wanted. The device that was recommended for him is the Vantage Lite. And while it is totally cool, the $7,495 price tag was not. So, we're putting that on hold and the school will have their own augmentative communication specialist work with him and possibly find devices we could borrow. In the meantime, Brennan's verbal communication seems to be taking off......so we'll see!

IEP

We had Brennan's IEP meeting at the beginning of March. I had read From Emotions to Advocacy and many IEP related articles and had spoken to other parents and attended a few workshops. I felt somewhat educated about what Brennan's rights are and what to expect from the meeting, but also felt like special education laws are complex and that it would take a great amount of time and research for me to feel really comfortable with them. So, I hired an advocate who will be my go-to expert as questions arise over the years to come. Going into the meeting, I had written down what my ideal education plan for Brennan would be (number of days, frequency of therapies, etc.). Luckily, the schools proposal match my ideal plan exactly. So, starting on Monday, Brennan will go to our local public integrated preschool (with a mix of kids on IEP and not on IEP's) four morning a week for 2 hours and 15 minutes per morning. He'll see the speech therapist and occupational therapist each twice a week for 30 minutes and the occupational therapist once a week for 30 minutes. The therapies will provided both in and outside of the classroom. He'll also have an aide to help him get from place to place since he is not yet walking independently.

And, as thanks for sticking with me through this very long post, here's a picture of Brennan showing how excited he is to be starting school:

Baby Steps

Helping Brennan learn how to walk has taken a combination of different methods, each a baby step toward the end goal. He started army crawling when he was 1 1/2 years old. It was over a year later when he first crawled on hands and knees. He's been getting physical therapy one hour per week since he was a month old. In addition to that, he did swim therapy for a couple of months. Swim therapy was great for him and really helped him learn to bear weight on his feet. Then he did a few sessions on a treadmill which helped him learn how to move his feet in a walking pattern.

Once he understood how to move his feet, he was ready for a walker (which his early intervention center graciously loaned us so he could practice at home).

He has loved this new sense of independence. He also loves how quickly he can get from one place to another!

A friend suggested taking Brennan to the mall to walk which has been so great for him. He loves the social aspect of saying "hi" and "bye" and waving to everyone he sees. And he'll walk, and walk, and walk until his hands hurt from holding the handles on his walker.

About two weeks ago, Brennan took a few step independently for the first time. It may still be a while until he's really walking on his own, but he's making great progress and we're SO proud of him.