Brennan's First Visit with Santa

We went to a Christmas party at Brennan's Early Intervention Center yesterday and Brennan had his first visit with Santa. His reaction was classic.......

At first he was a little scared of the man in the red suit

Then he took a minute to check him out (someone handed him bells, too - which helped to distract him)

And decided that Santa's not so scary after allPriceless.

Lil' Dipper, Anyone??

I recently asked an Occupational Therapist at Brennan's Early Intervention Center for recommendations on how to help Brennan learn to feed himself with a spoon. She said that Gerber Lil' Dippers were a good beginner utensil. They have a large rubber handle which is easy to hold and a flat end so it doesn't matter which direction the utensil is facing, thus giving the child the most opportunities for success. We've only used them a couple of times, so I can't give a personal report on their success - but they seem like a good little tool. I found them on e-bay for a really good price, so I have 4 packages (with 2 Dippers per package) that I would like to send to anyone who would like to give them a try. Just send me and e-mail at brennansbeginnings@yahoo.com.

Awesome Trike

My friend Julia sent me the link to this trike and I just LOVE it! With the harness and seat frame, I think it will be perfect for Brennan as it will give him the extra support he needs. As an added bonus, pieces of the bike can be taken off as he grows and no longer needs them. Brennan's siblings spend alot of time riding their bikes in the spring, summer and fall and I'm excited for Brennan to be able to join them.

Magazines

There are two magazines I have found that are for parents of children with special needs. The first is Parenting Special Needs Magazine, which is a free online magazine. After a quick browse, it seems like a good source of accurate information as well as inspiration. The second is Exceptional Parent Magazine which is available in print and online by paid subscription. I have subscribed to this magazine for about a year and have found useful information in each issue. Please let me know if there are any other magazines for parents of children with special needs that you know of and would like to share.

The Mustn'ts

Listen to the Mustn'ts
by Shel Silverstein

Listen to the mustn'ts, child,
Listen to the don'ts
Listen to the shouldn'ts
The impossibles, the won'ts
Listen to the never haves
Then listen close to me -
Anything can happen, child
Anything can be.

I was reading "Where the Sidewalk Ends" with my daughter last night and just loved this poem. It is short and simple, but emphasizes an important point. I think parents are too often told of their children's limitations....that they won't be able to do something because they're too big, too small, too short, too tall, not smart enough, not strong enough, too this or too that. This poem reminds me to ignore the naysayers and to encourage and support my children in achieving whatever it is they want to achieve. As Shel says, "Anything can happen, child. Anything can be." I came across an article this morning that proves this point, yet again.

Brennan and Jenna

Monica from Monkey Musings tagged me in the Name Tag game, where I am supposed to explain how we chose each of our children's names. We did not have any family names that seemed fitting, so we headed to the book store and bought a couple of baby name books. Eric liked unique names and I liked traditional names....so, in naming Jenna, Tanner and Parker, we compromised with names that aren't totally common, but aren't totally uncommon either. Jenna has my middle name (Noel), Tanner has Eric's middle name (Christian), Parker has Eric's dad, brother and nephews first name as his middle name (James) and Brennan has Eric's first name as his middle name. But, no big stories or significant background for each of the kids first names. Except Brennan. Jenna actually named Brennan. I'm not sure how she came up with the name (although one of her best friends from preschools last name is Brennan - but Jenna says she didn't know that when she picked it). But for quite some time before he was born, she said she thought his name should be Brennan. When he was born, we decided she was right. And, you could say, the rest is history - as the two have had an incredibly close bond ever since.
All of our kids adore and have great relationships with Brennan - but I think Jenna may be his biggest cheerleader. She is incredibly observant and notices and brings to our attention each new skill Brennan learns. You'd have thought it was Christmas morning the way Jenna was jumping up and down and cheering the first time Brennan got into a sitting position by himself. When friends of mine are inquiring about Brennan and how he's doing - Jenna jumps in and starts telling them all of the things he can do. She's just so proud. She holds him, hugs him and plays with him countless times throughout the day and always tells him that she loves him and that he's the best baby in the world. And I know that she means it.

A Quote

"Enjoy the little things in life, for one day you'll look back and realize they were the big things"

I saw this quote in a store a while ago and have thought of it many times since. I find myself enjoying the little things even more than usual lately....the sweet interactions between my kids, the funny things they say, their contagious laughter, their heart warming hugs. These seemingly little things really are the big things in life.

Our Fall Schedule and One Cute Cow

With our kids at ages 1, 3, 5 and 6, they are going in four separate directions during the week. Jenna is in 1st grade and is at school 7 hours a day 5 days a week, Tanner goes to Pre-K for 3 hours a day 5 days a week, and Parker goes to preschool 3 hours a day 3 days a week. Jenna, Tanner and Parker all take swimming lessons once a week, Jenna has gymnastics once a week, Jenna and Tanner both play soccer once a week and Jenna goes to an art class once a week and Daisy's once a month. Brennan currently has therapy 4 times a week. One hour each with a physical therapist, speech therapist and developmental specialist (who all come to our house), then one and a half hours at our local early intervention center where he attends a playgroup run by a physical therapist and two occupational therapists. One half hour is spent in their therapy room working on gross motor skills and the remaining hour is like preschool where they have a snack, circle time and play time. The amount of therapy he has seems right for him and for our family. Brennan's service coordinator recently asked if we'd like to add any services and I felt confident saying that we wouldn't. Three of Brennan's four therapies are scheduled while his siblings are at school, which I really like. It lets me focus on his therapies while also not taking time away from my other kids. So, there you have it - our fall schedule. And, just for fun, a picture of one cute cow on Halloween night with his Grandma.

Hallelujah!

Brennan is (finally) drinking from a straw and I couldn't be happier! We had been working on it daily for months and I was starting to feel pretty discouraged. So, we took a short break from the straw ( I think I needed the break more than him!). Then, I gave him some soy milk in the honey bear on Friday and he drank from it all by himself. I wasn't that excited when it first happened because I thought it may be a fluke and the next day we'd be back to me squeezing the liquid into his mouth. But, he has been drinking from it by himself several times a day since then - even signing "drink" or pointing to the honey bear wanting to drink quite often. He gets pretty cranky now if someone else is having a drink and he's not. Quite a change from even a few days ago! He'll even hold the honey bear by himself, which is great! I'm so proud, happy, relieved.....hallelujah!

Brennan and Parker

Parker, our third child, turned three years old in June. As the child closest in age to Brennan, I have wondered how their relationship would evolve. When we found out our fourth child was going to be a boy, I assumed he and Parker would be good buddies - and I believe they are. Parker calls Brennan "babe", "baby" or "baby Brennan" and can frequently be found talking to him, giving him a toy, or teaching him how to do something. One of the first things he asks me after he wakes up in the morning is "Can we go wake up Baby Brennan?" I have heard him countless times tell Brennan that he loves him and that he's the best baby. He always tries to get the seat closest to Brennan at the kitchen counter and pulls his seat as close to Brennan's as possible so they can talk while they're eating. It's about the cutest thing in the world.
On a recent trip to the playground with Brennan and Parker, I had a moment where I felt sad for Parker. I was picturing what it would be like if Brennan didn't have the bonus chromosome. They would be running around, Brennan following Parker up the stairs and going down the slide together. Instead, I was holding Brennan as Parker ran around the playground. Then Parker yelled from the top of the slide "Mom, put Brennan at the bottom of the slide, he wants to watch me!" So, I did - and Brennan and Parker laughed and laughed....Parker going down the slide and Brennan watching, clapping, and both of them laughing over and over and over again. Parker, even at his very young age, is making sure that Brennan doesn't miss out on a thing.

Holland?

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This poem was written by the mother of a child with Down syndrome. I read it for the first time when Brennan was a couple of weeks old and felt that it put into words exactly what I was feeling. Suddenly, I was in a place that I wasn't expecting to go and quite honestly didn't want to be. I held out hope that, with time, I would find and enjoy the very special and lovely things about Holland. But now, I don't actually feel like I'm in Holland. I feel like I'm still in Italy - but instead of going to Rome and Venice - the cities where most tourists go, I get to go to Portofina and Vercelli - which are just as beautiful, but with fewer visitors. I'm a mother of four fantastic kids and happy to be exactly where I am.

The Buddy Walk

Yesterday was a beautiful, sunny fall day for the Massachusetts Down Syndrome Congress' Annual Buddy Walk. The MDSC members registered 2,000 plus walker and raised over $230,000. It was wonderful to see so many people gathered together to promote acceptance and inclusion of people with Down syndrome. Pictured below are Dr. Brian Skotko, who tirelessly advocates for people with Down syndrome, and Karen Gaffney, who is an accomplished swimmer and inspirational public speaker and self advocate.

And, of course, our inspiration....

Brennan in Action

Here's a video of Brennan in action. He's not interested in crawling yet, but who can blame him when he obviously has so much fun rolling? He also loves to tell funny stories while using hand gestures to get his point across. Enjoy!

Me With My Happy Boy

As is the case with many Moms, I am usually the photographer and therefor, rarely photographed. So, a big thanks to Eric's cousin, Lori (my cousin-in-law?), who took this picture while visiting us this summer. I absolutely love it. Brennan's big smile, while excitedly clapping his hands....it's so him and perfectly captures the daily interaction between us. This little boy is pure joy.

"My Great Story"

The National Down Syndrome Society has compiled an online book called "My Great Story." It is full of inspiring stories that celebrate the lives, interests and achievements of people who have Down syndrome. When you have some free time, stop by and read some truly great stories!

Dr. Allen Crocker

"As one grows with the child and as the trip of life is unfolded, the special features become part of a collection of goodness and personalness that are your new child. When you reflect you can identify that that 47th chromosome has indeed made a difference but in the sum this difference has made an extraordinary human and someone for whom you could not have realized or anticipated the happiness and strengths that will be seen and felt. Parents tell me again and again how they have been unexpectedly rewarded and blessed by seeing with new vision. These babies have an unparalleled set of personal features that take us with them, open our eyes and fill our hearts. Perhaps one of the most profound experiences of a special parenthood is coming to realize that your old perceptions were too limited and that there is much waiting to be embraced. That extra chromosome becomes a ticket to some new warmth and features that change lives and change them well."

This quote from Dr. Allen C. Crocker was posted by fellow mom, Heather, on an online Down syndrome board that I frequent. It was taken from the DVD "Down Syndrome: The First 18 Months" where Dr. Crocker was discussing his thoughts about raising a child with Down syndrome. I have read and re-read this quote countless times. It is so beautiful, so warm, so heartfelt and I believe each word completely.

Dr. Crocker graduated from medical school in 1948 and has worked with children with developmental disabilities for his entire career. He has advocated tirelessly with the goal of bettering the lives of ALL children. He was instrumental in setting up the Down Syndrome Clinic at Children's Hospital in Boston and has been very active with the Massachusetts Down Syndrome Congress, among numerous other outstanding achievements. Eric and I were fortunate to be able to take Brennan to meet Dr. Crocker when Brennan was just a few weeks old. He was the most caring and optimistic doctor I have ever met. He spoke to us as if we had just won the lottery by having Brennan in our lives. Not a negative word was spoken - which was in great contrast to our experience with other doctors up to that point. Although I was still in a new baby/new diagnosis fog, I remember leaving that meeting feeling encouraged and thinking that maybe Dr. Crocker knew something that I didn't. He helped me start to see our future in a brighter light. As we saying our goodbyes, he leaned down and kissed Brennan on the forehead. It was the most touching moment. What a dear man who has done so much for so many children and their families.

Serious Cuteness

The Day After

The morning after my pity party, I was still feeling down. At 9:00 that morning, Brennan's developmental specialist arrived unexpectedly. Between her vacations and our vacations we hadn't seen eachother in a few weeks and hadn't scheduled that day's appointment. I was not exactly in the mood for one of Brennan's therapy sessions that morning, but figured we should go ahead with the visit since she was already at our house. And I was SO glad we did. Since she hadn't seen Brennan in a few weeks, she was constantly pointing out all the things he had learned, all the things he was able to do now that he wasn't doing just a few weeks ago. Brennan loves his developmental specialist and was full of smiles and laughs while he showed off his new skills. It was exactly what I needed to get myself back on the right track and focusing on the many positives instead of getting stuck on the negatives. Soon after Brennan's therapist left, I received these from my very thoughtful husband, which also really helped to brighten my day!
We're definitely back on the right track, working on the straw (among many other things) and knowing that he will get it....it just takes time and patience.

A Bad Day

Last week I took Jenna to meet her 1st grade teacher in anticipation of the start of school. I found myself holding back tears while we were at the school. But, the tears weren't for Jenna - they were for Brennan. I feel confident that Jenna will like 1st grade, that she will learn and make new friends. I feel the same about Tanner and Parker. But Brennan? I'm not so sure. I honestly can't imagine sending him off to school. Will he like being at school? Will he be able to tell me if he doesn't? Will he be accepted by his peers and their parents? It feels so safe having him home with me where I can care for him, protect him, make sure his needs are met and that he is happy. To send him to school where someone else will be responsible for him seems unimaginable.

After we visited Jenna's school, we were out with a group of kids. Brennan was enthralled with the amount of activity and watching intently with his mouth hanging open, as he sometimes does. One of the kids looked at him and started laughing saying "look at the baby's mouth." He went on and on, laughing and laughing, saying "look at him, look at the baby, look at his mouth." I said something about Brennan being so in awe of all the excitement, that I thought he was probably trying to say "wow" or something like that. I didn't want to make a big deal out of it as I don't think the child was being mean spirited. I think he just noticed something that seemed different about the wat Brennan looked at that moment, found humor in it and wanted to point it out to his friends. It may not sound like a big deal, but it broke my heart. It was the first time that a child has made fun of Brennan for something that Brennan has absolutely no control of and it made me feel terrible. Really terrible.

When we came home that night, I was feeding Brennan and working on helping him drink from the straw cup and just started crying. We've been working on the straw every day for weeks and occasionally for weeks before that and he still doesn't get it. I put the straw in his mouth, wait for him to close his lips, then squirt some liquid into his mouth. The theory is that at some point he will learn that he needs to suck in order for the liquid to come out of the straw. But that hasn't happened. He just hasn't gotten the hang of it and I'm feeling so frustrated. I want so badly to be done breastfeeding, but obviously can't until he can get enough liquids from another source. I feel like I need a break - a few days away without the kids - and I just don't know when that will happen if I can't wean him. There are many other skills that we've been working on for much longer than the straw, but the straw is the only one that causes me frustration because it directly affects me and my ability (or inability) to have a much needed weekend for myself.

Basically, I had a big 'ol pity party for myself that night. I cried and cried and cried. I haven't had a night like that since Brennan was a couple of months old. So, maybe I was due.

A Sports Article?

I'm admittedly not a big sports fan, but while doing my daily facebook check, I came across this article that my friend Patty had posted. It's about a father and son and their recent trip to a St. Louis Cardinals game. It is an incredibly touching story and one worth sharing.

Look at Those Teeth!

Here's Brennan showing off his pearly whites!He got his first tooth when he was 11 months old. The next tooth came a couple of months later and he's been teething ever since....with tooth number 9 currently getting ready to make its appearance. They've all come in rather slowly and look like they'd be really painful, but luckily haven't seemed to bother him much.

Dave Hingsburger

Most of the blogs I read are blogs of fellow moms of kids with Down syndrome.....with one exception. Almost a year ago, I came across the blog of Dave Hingsburger. He has worked in the field of disabilities for over 30 years and recently became disabled. He has an interesting perspective having been an advocate for others, now being an advocate for himself as well. His posts are;

heartwarming:
http://davehingsburger.blogspot.com/2009/08/shoes.html

heart wrenching:
http://davehingsburger.blogspot.com/2009/08/blog-post.html

thought-provoking:
http://davehingsburger.blogspot.com/2009/08/change-is-due.html

http://davehingsburger.blogspot.com/2009/05/pity.html

inspiring:
http://davehingsburger.blogspot.com/2009/05/kelly.html

He is an amazing advocate for people with disabilities and has a gift for putting his thoughts into words. Stop by his blog once in a while, you'll be glad you did.

i did it

The lovely and amazing Jennifer (Mom to Diego, Mateo and Joaquin) started a hugely successful "i did it" campaign. Through this campaign, parents of children with Down syndrome across the country have purchased the t-shirts above to celebrate their children's achievements. In return, Jennifer is using the proceeds from the sale of t-shirts to purchase copies of Gifts 2 which she is distributing to local hospitals, genetic counselor's offices and pediatrician's offices. What a fantastic idea - combining the celebration of our children with helping new and expectant parents. Thank you, Jennifer.

I think Brennan knew this t-shirt was coming and wanted to do something really big for the occasion....so, after months of being totally resistant to putting pressure on his feet - he started pulling himself up to stand this week. We are so proud!

Learning to Ride

I read an article in the Boston Globe recently about a camp that teaches kids with special needs to ride bikes. Soon after having Brennan, I read that this is a skill that many kids with Down syndrome are unable to learn. Riding bikes seems like such an integral part of childhood and I was sad to think that it may not be a part of Brennan's. I even read recently that as few as 10% of kids with Down syndrome can ride bikes. However, the camp that is discussed in the Boston Globe article says that after attending a week long camp, approximately 85% of the campers learn to ride. It makes me wonder how many other things that were believed to be impossible for our kids are, in fact, possible - it's just a matter of finding the right method of teaching.

Oral Motor Therapy

My Mom and I attended oral motor therapy workshops at the NDSC convention a couple of weeks ago presented by Sara Rosenfeld-Johnson, a speech therapist/feeding specialist of 35+ years from Arizona. I can honestly say that they were the most interesting and beneficial workshops I have ever attended. Her therapy focuses on strengthening the jaw, lips and tongue. Sarah's approach utilizes straws, horns and whistles, among other things, to build muscle strength around the mouth and jaw which will, over time, improve a child's feeding mechanics (e.g., chewing and swallowing) and speech clarity.

Brennan has been seeing a speech therapist who specializes in feeding since he was about 10 months old. He progressed from infant cereal to baby food to table food and by the time he was 13 months old, we stopped working on feeding and started focusing more on speech and then on getting Brennan to drink from a sippy cup. Sara is strongly opposed to the use of sippy cups, as it encourages tongue protrusion. She supports the use of straws instead which encourage tongue retraction. To illustrate her point (and the proper positioning of the toungue when speaking), she asked us to put our mouths in the position used to draw liquid from a sippy cup, then to put it in the position used to draw liquid from a straw. Then she asked us to count from 1 to 20, noting the position of our toungue in our mouths. Saying almost every number required the tongue to be toward the back of the mouth as it is when you drink from a straw. None of the numbers (or really any speech for that matter) require the tongue to be over the front bottom teeth as it is when you drink from a sippy cup. These simple exercises, along with many other statistics and examples from the conference and personal experience with Brennan was more than enough to convince me that we need to get rid of our sippy cups and move to straws.

Continuing her theme about the effect of low muscle tone on mouth muscles, she observed that it is fairly common for kids with Down syndrome not to chew their food (or chew it incorrectly or ineffectively). I considered this for a moment but felt somewhat encouraged that since Brennan had been eating solid foods so well for the last several months, that he must have good jaw strength and be chewing his food well. I was wrong.

On the last day of the convention, we saw Sara in the exhibit hall and my Mom asked if she would watch Brennan eat and let us know if he was actually chewing. My Mom gave Brennan a bite of a banana, his mouth moved and then it was gone. I was watching proudly and then noticed Sara shaking her head back and forth as she said "No, he's not chewing. He's moving the food back and forth with his tongue and then swallowing it." She said he may be chewing solid foods, but was definitely not chewing the banana. We didn't have any solid/crunchy foods with us, but as soon as we got back to the hotel I gave him a piece of a veggie stick. Sure enough, he moved it with his tongue from one side of his mouth to the other, then swallowed it without ever chewing. Unfortunately, very few therapists work on strengthening this area of the body. Now I knew we had to start working on oral motor therapy.

When I got home, I looked on Sara's Talk Tools website under the "find therapist" link and saw that there were no therapists in Massachusetts. Then I looked at the "travel clinics" link and saw that Sara was going to be doing evaluations for two days in Rhode Island the following week. I called immediately and set up a time to meet with her. In the meantime, I took Brennan to his weekly appointment with his speech therapist/feeding specialist. I took various foods with me so she could watch him eat and voiced my concern about him not chewing. She agreed that he is not, in fact, chewing his food and said "but, he's eating, getting his food down safely, and getting the nutrition he needs." I was shocked. How could a feeding specialist not view chewing as important? I also asked about the sippy cup versus the straw (since she had been working on helping me transition Brennan to a sippy cup). She said either would be fine. I walked out of the appointment feeling discouraged and immediately called Brennan's EI coordinator to request a new therapist.

A few days later, we drove to Rhode Island to meet with Sara. As I was telling her about the experience with Brennan's current speech therapist/feeding specialist, she didn't seem surprised. Brennan babbles quite a bit which Sara noticed immediately and asked what his current speech therapist says about his babble. I said that she is always really impressed and encouraged by his many consonants, vowels and combinations. Sara said "but did she ever voice concern over the fact that he makes these sounds abnormally - with his tongue between his lips?" Uh, no. Then she said "It's all about expectations. It sounds like his therapist expects that he will have unclear speech and expects that he may not eat properly." In that moment, I realized that she was right. If a typical child had gone into the therapist and wasn't chewing, or was pronouncing all consonants with his tongue out of his mouth, I think she would have been concerned. But, since my child has Down syndrome she expects less of him. As we progressed through the evaluation, I was able to see how very weak Brennan's jaw is and how much work it was for him to actually chew.

On the way home, I felt so deflated. I felt like I had been failing my son. Taking him weekly to a therapist who does not see his full potential and who does not have high expectations for him. Following her advice and doing what she has suggested has quite possibly done more harm than good. However, I believe we are now on the right path. We have much work to do, but I feel strongly that this is the approach we need to be taking to teach Brennan to eat safely and correctly and to give him the best chance at clear speech.

The 3rd (and last) day of the Convention

My mom attended a grandparents sharing session on the first day of the convention and met a father whose daughter is pregnant and just found out that her baby has Down syndrome. We had seen him a couple of times during the weekend, but had never met his daughter. Just before we were getting ready to leave for the airport, a few of us got our kids together to take some pictures. As I was taking the picture below, the grandfather-to-be and his daughter walked up to talk to my mom. I didn't see them walk up since I was taking pictures, but I heard the mom say "this gives me so much hope." Here she was watching four adorable kids smiling, sitting, crawling and being totally adored by their parents and others passing by. What comfort this must have given her as she could now picture her baby as unbelievably cute and full of personality instead of just as a diagnosis. To make this moment even better - she is from the same area as the other three kids in this picture - so she was able to make connections at that moment that will last a lifetime. What a gift.

Day 2 the Convention

Better late than never, a continuation of my time at the NDSC Convention........There were three highlights to the 2nd day of the Convention. The first was being able to meet in person many moms that I have gotten to know through their blogs over the past year. They include: Jennifer from Three's a Charm, Monica from Monkey Musings, Danielle from Forever Better, Catherine from Hang on Little Tomato, Cori from Our Bundle of Joy, Lisa from Genetically Enhanced, Carol from Little Miss Magic, Chrystal from One More, More than One and Carin from Learning as I Go. It was wonderful to meet and get to spend time with this amazing group of moms. I also loved meeting their adorable children who really are even cuter in person!

The second highlight was a speech given by Christi Hockel, a lovely young woman who has Down syndrome. She was hilarious. She definitely has a gift for public speaking and had the crowd laughing out loud time and time again. She spoke of her many accomplishments which include having a drivers license, living in her own apartment, taking college courses and being on the NDSC board. But, more importantly, she talked about the many things in her life that make her happy......her big family (I think she said she has 35 nieces and nephews), her fiance who she will marry this fall, her job, exercising and volunteering in her community. You can tell without a doubt that she is happy, genuinely happy - and isn't that what we all want for our kids??

The third highlight was the dinner/dance. During the dinner, numerous awards were presented. All of the recipients have played a part in bettering the lives of people with Down syndrome. Two really stood out to me. First was Ryan Rotundo who has lead the NDSC's Brothers and Sister Conference for several years. He has put alot of time and energy into ensuring that the Brothers and Sister's Conference at the NDSC Convention is a success. He thanked his mom and dad for all of their help and encouragement, then thanked his sister, who has Down syndrome, for being "the best teacher of all." I watched him and envisioned the impact Brennan will have on Jenna, Tanner and Parker. I hope they will feel the way Ryan does about his sister. Then there was Mike Machado, a football coach who was inspired by his team manager who has Down syndrome to establish a football camp specifically for athletes with Down syndrome. They showed a clip of the kids at camp and the excitement they felt came right through the screen. I am so grateful for Mike and other like him who do not have a familial connection to someone with Down syndrome, but are making a positive difference in the lives of people with Down syndrome. The night ended with music and lots of dancing - I've never seen a dance floor fill up so quickly. It was the perfect ending to a very memorable day.

Day 1 of the Convention

Brennan, my Mom and just returned from Sacramento where we attended the National Down Syndrome Congress' annual convention. It was amazing! I learned so much useful information from the workshops, was inspired by the self-advocate and other general session speakers and was able to meet so many wonderful families. I can't begin to express the joy I felt at seeing so many beautiful faces in one place. To walk into our hotels restaurant for breakfast and see a person with Down syndrome at every table was like walking into a dream. So far from our every day reality, but so wonderful.

On Friday, I attended a workshop on Oral Motor Therapy presented by Sara Rosenfeld-Johnson and can say without a doubt that this was the most interesting workshop I have ever attended. Everything she said made so much sense and seems incredibly beneficial for kids with Down syndrome. I can't wait to start the therapy with Brennan (I'll share more on this in a separate post). Then, I attended a Mom's Sharing Session for parents of kids from newborns through two years old. The session was hosted by Kathryn Lynard Soper, the editor of the book Gifts and the soon to be released Gifts 2. To have a place where 40 or so moms could get together in person and share their feelings about their children with Down syndrome was truly a gift. I learned strategies for managing time, heard views on the role and importance (or lack thereof) of therapies, and cried many tears hearing the emotions and concerns of other moms - being able to clearly recall experiencing the same very intense feelings and concerns when Brennan was born. The session was an hour and a half long, but we all had so much to share and wish we could have stayed there for hours and hours.

After the sharing session, we headed to the opening session where we were inspired by three self-advocates who spoke about their lives and their achievements. The opening session was followed by a reception with cocktail and hors d'oeuvres, but Brennan and I were both pretty worn out after a long day of travel the day before (which included a flight delay, a missed connection and an unexpected stay overnight in Texas), so we stayed at the reception for only a short while, then headed back to our hotel for the night.

Brennan at 16 months

At 16 months old, Brennan:

-loves to wave "hi" and "bye"
-signs "eat", "more", and "all done"
-has a great appetite
-gets mad if someone near him is eating and doesn't share with him
-likes putting things into and takings things out of containers
-is so happy being able to sit that he still has no interest in crawling
-thinks playing in the water in his bath or at the beach is the most fun ever
-likes making music with his piano and maracas
-puts his hands up in the air when we say "so big"
-loves to clap for himself and others
-gives the best hugs
-likes stacking his stacking rings
-adores and is adored by his siblings
-sways back and forth when we sing to him
-throws toys when he's done playing with them
-has his 3rd, 4th, 5th & 6th teeth all coming in at the same time
-has the cutest little laugh
-is the perfect addition to our family

Summer Fun

The Big Weight Check

As you may or may not recall, Brennan's pediatrician was concerned with Brennan's slow weight gain at his 12 month well visit. During the time between his 9 and 12 month visits, he gained only 5 ounces. His thyroid was tested at that time and the results were within the expected range, so we knew that wasn't a factor. His pediatrician recommended we see a nutritionist, set up bi-weekly weight checks and start adding butter to his food. After some thought, I declined all three. Brennan has a healthy and well balanced diet - so I continued with his current feeding program, adding healthy fats (such as avocados with olive oil) when possible, and decided to only be concerned if he started to lose weight. I am happy to report that at Brennan's 15 month well visit he gained 2 pounds, 5 ounces. He's now tipping the scales at 17 pounds, 5 ounces and is measuring 29 3/4 inches. This puts him in the 25th percentile for weight and the 75th percentile for height on the Down syndrome chart. Although pediatricians can offer good advice, we moms know our kids best and need to follow our own instinct - and I'm glad that I did.

Got Teeth?

Brennan has spent the better part of the last couple of months looking like this:

or this:

or this:
Yep, this boy is teething! I had read that the teeth of kids with Down syndrome often come in late and/or in an unusual order. I am here to confirm that both are the case for Brennan. His first two teeth came in at 11 months. They were his bottom middle teeth, which seemed like the usual order. Then at 15 months, his third and fourth teeth broke through and are his top premolars! I thought this would make for an interesting look since his top middle teeth hadn't made any sign of appearing. Then, this week, his top middle teeth started to break through. So, Brennan has alot going on in that little mouth of his. Somehow he hasn't let it bother him....he does lots of finger chewing, but little to no complaining. All of his teeth seem to be coming in veeeerrryy sloooowwllly - but I will hopefully update with pictures of his toothy grin soon.

Brennan's Evaluation and Crawling Revisited

In a comment about Brennan's evaluation, Jessica from Ten Squares Three Squiggles said that her son's evaluation also included age equivalents, which would give a correlating age for each of the areas tested. Prior to Brennan's evaluation, I told his EI coordinator that I would prefer to not have age equivalents listed. I agree with Jessica's comment that an evaluation for someone (especially someone who automatically qualifies for services due to a diagnosis) should state what the child is currently able to do and their goals for the coming year should be. An approach that focuses on the positive, what our kids can do and what they should be working on next. Those are the important and relevant pieces of information.

And about getting ready to learn to crawl, Karen from The Bryant Family News said "watch what you wish for" because "once they go, there is no stopping them." I admit to having a little bit of mommy-guilt about this because I'm actually not that anxious for him to be mobile. I know what comes with a mobile 1 year old.....baby-proofing the house (again!), worrying if the older kids left a door open, having to keep an eye on the little one ALL OF THE TIME. Ugh, it makes me tired just thinking about it. Of course I work with him, I do what his physical therapists suggests, do all that I can to help him because I know it's important. But secretly (or not so secretly anymore) I'm a little bit happy that he's taking his time. Everyone involved believes he WILL learn to crawl and that he WILL learn to walk and I'll be thrilled to pieces for him when he actually does. But for now, I'm enjoying having one child that will happily stay in one place. One less person to keep an eye on at parties, at the playground, at the beach. I'm pretty sure that this will be the last summer that he'll sit so contently - so I'm going to enjoy every minute.

Our First Trip to the Special Olympics

After attending a Special Olympics fundraiser at a friend's house a couple of months ago, we were invited to attend the summer games and be part of the "Be a Fan" tour. So, Saturday morning, Eric, the kids and I headed up to Harvard University for the Special Olympics Massachusetts Summer Games. It was an awesome experience.

We were with about 15 other people on the the tour. I had assumed the other "fans" would also be families of children with special needs, but they weren't. They were all people who just want to be a part of this very special organization. Maybe some had seen an ad like this one:



Or maybe they had a personal connection. One of the men on the tour said he was there because he wanted to encourage his kids (ages, 10, 10 and 13) to volunteer and thought it would be a great thing to do as a family. He told me he chose Special Olympics because he had a friend 20 some years ago with a sister with Down syndrome. He said the friend and his sister had an incredibly close relationship and had both left a lasting impression on him.

During the tour, we were able to watch athletes participate in swimming, gymnastics, track and field, tennis and volleyball. There were glowing smiles, enthusiastic thumbs up and high fives everywhere. We were also given a bit of history about the Special Olympics and also specifics about Special Olympics Massachusetts. There were 2,129 athletes participating in Saturday's games. I didn't hear the exact number of volunteers, but was impressed that a single Boston-based company had sent 400 volunteers. Wow!

For those of you interested, there was a great article in Sports Illustrated a few months ago that told the history of the Special Olympics, which was started by Eunice Shriver in 1968. What an amazing organization she had the vision to create. I can barely begin to fully comprehend the positive impact that the Special Olympics has had on millions of lives...not only of those that compete in the games, but also spectators and volunteers. I felt honored to be able to spend a day cheering for the Special Olympics athletes and look forward to many more such days...especially when I can be there cheering for Brennan.

And just for fun, here's my favorite commercial from the 2008 Summer Olympics in Beijing:

Brennan's 12 Month Evaluation

A couple of months ago, Brennan had his 12 month evaluation from our Early Intervention provider. They are required to evaluate him every 12 months even though he automatically qualifies for services due to his diagnosis. During the evaluation they "test" him in various areas to see what he can and can not do. Truthfully, the assessment was somewhat uncomfortable for me. I've never had one of my kids asked over and over to do things they aren't yet able to do. And to do that to a baby seemed just wrong. At one point, they put a ball on his tray, put one cup upside down over the ball, then put another cup upside down on the tray. They moved the cups around and wanted Brennan to guess which cup had the ball under it. At 12 months, I knew this was way beyond his comprehension. It felt a bit like asking my 6 year old to do calculus. The thought that he will be tested in this manner on a regular basis is somewhat unsettling to me. But, it seems there's no way around it. Having done it from such a young age, maybe Brennan won't think much of it (a girl can hope, right?).

Anyway, back to the results. If a child scores 77 or below on any of the areas, they will be eligible for services. Brennan's scores were as follow:
Adaptive - 75
Personal/Social - 90
Communication - 69
Motor - 66
Cognitive - 106

While Brennan's EI coordinator was discussing the results with me, she would give me this sad look when discussing the areas where he scored below 77 and would give me a quick smile with the ones where he scored above 77. Honestly, I didn't have feelings of happiness or sadness with his results. He's happy and he's making progress....at his own pace. Whether he scores a 15 or 115, I know he's doing his best and I am so proud of him.

The "Stander"

As I've mentioned, Brennan really doesn't like bearing weight on his legs. He will either lift his legs up or push his bottom toward the ground whenever we try to put him in a standing position. And putting him on hands and knees is impossible - he uses every Houdini move possible to get himself and keep himself out of this position. So, last week his physical therapist brought this lovely wooden contraption (which she calls "the stander") for Brennan to use.

He'll stand in it happily for about 3.2 seconds...then the squirming begins. We're definitely going to have to come up with other ways to convince Brennan that crawling and standing really are worth learning to do.

Brennan's First Boating Trip

Last weekend, we took Brennan out on the boat for the first time and went over to one of the Harbor Islands (pictured above). He wasn't sure about it at first - mainly due to the really uncomfortable life vest he has to wear - but he got used to it and ended up really enjoying the trip. I picture many boating, lobstering and fishing trips in his future!

Delivering the Diagnosis

When the doctors were explaining Down syndrome to us in the days after Brennan's birth, every bit of information they gave us was negative. Really, every bit of it. No wonder I was feeling such doom and gloom. Then I met and read stories from parents of children with Down syndrome and the stories from them were overwhelmingly positive. I try to imagine how differently and more optimistic I would have felt from the beginning if I had been given both "medical" and "real world" information in those first days. If a doctor and a parent could deliver a diagnosis - what a difference that would make!

Down Syndrome and Divorce

One of the many "fun facts" that the doctors shared with us upon telling us that Brennan had Down syndrome was that parents of kids with special needs have a higher divorce rate than the general public. I didn't put much faith or thought into this statement - but Eric was really bothered by it. So, he did his own research and found that parents of kids with Down syndrome actually have a lower divorce rate than the general public. Interesting, isn't it?

Brothers

I don't often get pictures of Parker with Brennan. Parker gives Brennan a surprising amount of attention for an almost 3 year old, but I rarely catch these moments on film. Parker spends most of the day running around like a tornado, pretending to be batman or saving people from the "hot lava" - but he makes quick stops throughout the day to talk to Brennan, give him a toy or give him a quick hug and a kiss. I finally captured a couple of sweet moments between the two of them. True brotherly love.

Brennan at 14 Months

Our little man is 14 months old so, I figure it's time for an update.

He has been sitting independently for a while now and LOVES it. In fact, he loves it so much that he has absolutely no interest in putting weight on his hands or legs (which is going to make learning to crawl and stand pretty tricky!). Each week his physical therapist comes up with new things for us to try in order to increase his leg and arm strength despite his ability to quickly squirm out of almost any position other than sitting. The last couple of weeks, he has actually enjoyed being in his jumper-thingy and is getting better and better at using his legs to bounce himself.

His physical therapist also suggested we have him sit on a step stool which will force him to put pressure on his legs. I think sitting like this makes him look so much older.
He's a great little eater. He eats lots of fruits and veggies (either baby food, hand mashed or in small pieces) as well as chicken, veggie burgers, turkey meatballs, grilled cheese sandwiches, pasta, beans, cheerios....a good variety. I feed him mostly by spoon, but also let him feed himself. He's good at using his little fingers to pick up food and feed himself, but I can only put a couple of pieces of food on his tray at a time, wait a minute for him to actually chew and swallow, then put a couple more pieces on his tray. If I do it any other way, he ends up with a mouthful and I start get nervous about him choking. It honestly feels like he spend the majority his waking hours eating. As for liquids, he still relying solely on me. Yep, fourteen months old and still not interested in a cup or straw. I'm trying to be patient and keep the faith that eventually he WILL learn to drink from a cup! His speech therapist/feeding specialist is working on this with him and has suggested a couple of new cups to try (the honey bear and sip-tip cups for those of you "in the know"). So, wish us luck!

In the sleeping department, he's still doing great. He takes a 1 1/2 to 2 hour nap in the morning, a 2 hour nap in the afternoon and sleeps for about 11 hours at night. He goes to sleep easily and always wakes up happy. He often wakes up so quietly that the only way I know he's awake is if I hear him knocking his pacifier against his crib through the monitor. Sometimes I go to wake him and he's already wide awake, happily looking around his room.

In general, he's a really content baby. He rarely cries and if he does, he stops as soon as I hold him. He isn't thrilled by people he doesn't know well and will watch them intently with a very serious look on his face while being held, and then starts protesting and reaching for me. He definitely loves his family and especially his mom! He is such a sweet baby who makes me smile and fills my heart. I feel so fortunate to be his mom.

I'm not a saint, just a parent.

My post yesterday made me think of one of my favorite articles. My friend, Gretchen, sent it to me soon after Brennan was born. It's titled "I'm not a saint, just a parent" and was written by Simon Barnes, a sport writer in the UK who also has a son with Down syndrome. And while you're welcome to consider me a saint - I really am just a parent.

A Good Life

The other day someone asked how Tanner was feeling after having been sick recently with a fairly unusual virus. They said something to the effect of "God must really have alot of faith in you because he just keeps giving you more and more to deal with." Over the past year, a couple of other people have made similar observations such as "after all you've been through...." that seem to be subtle references to "hardships" of having Brennan. Granted, these comments are not from close friends or family, but it is clear that some people assume that having a child with Down syndrome is somehow extremely difficult or something to be pitied. This, of course, could not be farther from the truth. We may have worries or challenges that parents of "typical" kids don't, but as most families similar to ours already know, the joy of having Brennan in our lives is so much greater than the perceived challenges. The smiles, love and laughter that he adds to our home brings us so much happiness. Seeing the close relationship between him and his siblings, and meeting older kids and adults with Down syndrome and envisioning what Brennan's future holds brings us so much joy.

I recently read the saying "There's more than one way to have a good life." This is so true for me, for our family and especially for Brennan. The definition of a good life means different things to different people, but I can assure you that we have a good life....a very good life. And I believe wholeheartedly that Brennan does and will continue to, also.

Belated Birthday Cuteness

Here are a few pictures from Brennan's 1st Birthday..........

He loved his first cupcake

(as evidenced by him grabbing all of the icing and stuffing it into his mouth)!

Jenna and Tanner helped Brennan open his presents.

Yes, he is in different clothes since we didn't open his presents until a month after his actual birthday....that's just the way things work around here sometimes.

Jenna showed Brennan how his new toy worked.

And I think he liked it! Happy, Happy Birthday to our Happy, Happy Boy!

Health Stuff

When Brennan was born, the pediatricians spent a great deal of time telling us about the "maybe's" related to his health. Our doctors and most of the medical information I've read say "increased" risk of this, "increased" risk of that. But, percentage increases are rarely given. And, if they are, they are often so broad that they are not useful. Fortunately, most health concerns are correctable or can be managed.....taking medication for controlling thyroid levels, getting glasses to correct vision, getting ear tubes or hearing aids to restore hearing loss.

One of the scariest health concerns is a heart defect. And, although having to worry about your child's heart and preparing them for surgery would be terrifying, it is almost always correctable...often with less than a weeks stay in the hospital. The other scary health concern is cancer. Yes, an increased incident of childhood cancer. To me, this was the scariest health risk by far....since it was the one that could potentially take Brennan from us. But, the doctors and literature never told me what the percentage increase of was.

Over the past year, I have attended a couple of workshops about health concerns related to Down syndrome. The first was on ENT concerns and was presented by Dr. Sally Shott. She provided a ton of useful information, but one part of her presentation really struck me. The reported incidence of hearing loss in people with Ds is 38-78%. However, during Dr. Shott's research, she found that what is defined as hearing loss in this statistic is not what is used to define hearing loss in typical kids. I was shocked. Shouldn't the definition of hearing loss be consistent regardless of a diagnosis? She went on to say that, with proper medical care and placement of ear tubes when necessary, hearing loss in kids with Ds is actually 5-10%.


Additionally, after an entire year, I finally heard the actual percentage of kids with Ds that get cancer. My initial assumption was 20%, maybe even 30%.....I figured it must be a pretty high percentage since it was always one of the first things mentioned by both doctors and literature. At the workshop I attended last month, I learned that the percentage is actually 1-1.5%. And, although when it comes to cancer any percentage is too high, 1-1/5% is still a really low percentage. I think if this percentage were presented to new parents, instead of the totally vague "increased" risk - it would prevent a great deal of worry that I know I had when I heard and read this in Brennan's first days of life.

Susan Boyle

I'm sure you've all heard of Susan Boyle by now. Her performance on the show Britain's Got Talent shocked and inspired. She has a beautiful voice and she is getting much deserved recognition. Her story reinforces the saying "you can't judge a book by its cover." This saying has been magnified in my life by Brennan. I know that with Down syndrome come many stereotypes - both good and bad. I know that throughout his life, people will pass judgement or think they know something about him simply by looking at him. One of my biggest hopes for Brennan is that people will take the time to get to know him. And through getting to know him, will see that he is so much more than his diagnosis. That he is a person with his own unique personality, interests and talents. So, thank you Susan Boyle for helping to open peoples eyes and hearts.

Jenna and Down Syn-Drum

Last week, I took the kids to the Y for swimming lessons. On the way into the lesson, we saw a gentleman with Ds who works there. We stopped to say "hello" and the gentleman said "hi" then leaned down to say "hi" to Brennan in his stroller. He asked how old Brennan was, asked his name, and commented on how cute he was. We had to cut our conversation short since Jenna and Tanner's class was about to start. As we were walking away, Jenna said "Does he have the same thing Brennan has?" I was surprised that she made this connection since she hadn't met any adults with Ds before. She said she knew because people with Down syndrome (which she pronounces "down syn-drum") sometimes look similar. We had been to a playgroup for kids with Down syndrome the weekend before, so I asked Jenna if she had been able to tell which kids had Ds when we were there. She said that sometimes she could...except for Brennan, because according to Jenna, "Brennan doesn't look like he has Down syn-drum." He actually does - but to Jenna, he just looks like her little brother (who she likes to say looks just like she did when she was a baby!).