Taylor the superstar

I've been meaning to post this for a few weeks - one of Taylor's special teachers at her school has chosen our family for her research project at the University of Washington. We are so touched and happy to share our story - if we can help anyone through our experience, we so want to. You can get a great sense from this paper how much her teacher, Kelley Kirkpatrick, loves Taylor. It meant a great deal to us that she wrote such a special paper about our family. The names are changed to protect our privacy, but you'll know who is who.

Loving and Supporting a Child;
Growing Connections Where Once There Were None

*names have been changed in order to protect privacy of family

Michelle is a little girl with a big smile and a big heart. She is also missing her corpus callosum, which means the two hemispheres of her brain are unable to “talk” to each other in the typical ways that other children’s do. In fact, Michelle’s brain is probably just now teaching itself to find other routes around this malformation. Michelle is two years old and she has agenesis of the corpus callosum, or ACC. She lives with her two older siblings, Caleb and Cara, and her mom and dad Anna and John. Michelle was born in Seattle and she lives there now with her family.
Michelle has had a whirlwind first couple years of her life. Her parents became aware of her disability when she was about 8 months old. They noticed that she was very stiff and her limbs stayed tightly curled to her body, which John explained as “delayed protective reflexes.” After several trips to doctors and specialists, Anna and John were told that their daughter was lacking her corpus callosum. This explained the stiffness in her limbs and also meant that several major benchmarks and skill developments for her would most likely be delayed.
For Michelle, ACC means that she has yet to talk, her gross and fine motor functioning are impacted and she has not begun to walk, and eating and oral motor functions are very sensitive issues for her. Despite these facts, she has a very strong bond with her family, loves to laugh and play, adores music, is very snuggly, and has found ways to communicate including raising her eyebrows, shrugging her shoulders and tapping with her hands. Consistent physical therapy, about four times a week for the past year, has helped Michelle to mobilize her arms and gain control over the flexion of the muscles in her upper body.

Her parents say:
Michelle is on a pretty demanding schedule with private therapy 4 days a week and school 2 days a week. She often has a doctor appointment scattered in and has lots of play time. We find this topic hard to judge because Michelle’s progress, like many, is slow. With that said we are seeing advancements that we are excited about. We’ve learned that it is best if we don’t have specific expectations or goals, but know that we are doing our best to help her and she is working very hard.

Anna and John are very proud of her progress and pointed out just how far this little girl has come. Seeing her now, or meeting her for the first time, you can barely tell that her limbs were once stiff and curled. In fact, one of the communication goals her classroom team is working on is for Michelle to raise her arms up in order to tell them that she wants to be picked up!
In the earlier part of her life, while she was undergoing therapy and making considerable progress, Michelle had a seizure. Although it was relatively minor, it understandably gave the family quite a scare. John and Anna went back to the specialists and found that Michelle’s brain, because of her ACC, is highly susceptible to having seizures. Michelle is now on consistent seizure medication and has not had a seizure since, but the family believes that this medication, or perhaps the seizure itself, has caused a loss in some of Michelle’s prelinguistic babbling and early speech sounds. While this step back is disheartening, the family has so much love and faith in Michelle’s progress that there is no doubt the highly conducive language building environment they are fostering for her will help to regrow those skills. They can already see some of the skills coming back.
When asked about what the family does in order to help Michelle gain, regain, and maintain skills, they said:

We also have a large group of physicians and specialists that we see regularly, including neurologists, neurodevelopment specialists, pediatric optometrists, her pediatrician, allergists, feeding specialists, speech therapists, and more. It certainly gives us a level of perspective that we may have not had before. There are many things that used to stress us that now go unnoticed.

It is also very important to mention how much Anna and John incorporate and value the input of all family members – Caleb, Cara, and extended family included – in raising and loving Michelle. On the same hand, John and Anna have a healthy outlook on family development and make sure that everyone is treated equally time- and support-wise. “Special time with all three of our children is very important to us and to them. We are also especially proud of how helpful our older kids are with Michelle. They do not yet really understand Michelle’s condition but we can already see that they are excited to care for Michelle and love her very much”.
Some exciting developments happening in Michelle’s life currently are some of the delayed developmental milestones coming to fruition. Michelle is cutting teeth, gaining more composure over bodily movements, holding herself up in a standing position (and really enjoying it!), trying and tolerating new foods, and really adjusting well to the routine of her new early intervention classroom. Her family is very proud of her. They are also very grateful to be in the early childhood intervention program that they are in now, as it is allowing them access to all kinds of things that they had not seen before. As John and Anna said, “The parents behind the glass (at Michelle’s school) are talking about the best therapists, neurologists, therapies, etc. These are topics that most parents of typically developing children have no knowledge. It is comforting to have a place to go with questions and advice from people and a staff that have “been there before.” As her parents further explained, it is very difficult to deal with all the information and knowledge coming from the medical community and “the experts.” Say Michelle’s parents, “One of the hard things that we faced after learning of Michelle’s condition is that it is hard to find answers. The medical community does their best but their best often leaves you with no answers”. Michelle’s condition is not very common, and this means finding answers and planning for milestones or goal accomplishments is not straightforward or easy.
This family truly loves each other and takes care of all members, regardless of ability. Anna and John have been serious support systems for each other and are able for the most part to balance between the roles of being strong and needing encouragement. Something that I especially appreciate about them, and that stands out to me as a cornerstone of resiliency for them, is the way they approach life and roadblocks to it. Anna and John want simply to make sure that their children are loved and supported. For Michelle, this can look pretty different at times, but as long as her family is together and working for each other, nothing is impossible.

Her parents say;
We all take great joy in seeing Michelle happy. Watching all of the hard work that Michelle puts in weekly to learn small tasks such as getting in and out of sitting, hand function, standing, etc. is amazing. She has worked incredibly hard to use her hands, develop protective reflexes, gain balance while sitting, and so much more.

During a meeting with her family, John mentioned an important key to Michelle’s development. The area of cognition is the most advanced for her, and this means that she understands and knows a lot more than it may appear. It is imperative that all who work with and know Michelle talk to her like she understands. Her parents, and those who are close to her, will tell you that Michelle truly does understand and can in fact pick up many cues from exchanges with her. As a closing note about persons with ACC, high repetitions and exposures to stimuli can actually help the neuro-pathways in the brain to connect! Therefore, every opportunity with Michelle should not be underestimated. This deeply loved and highly motivated little girl will take and use each and every chance she gets to enlarge her world.

Some Resources and Needs
While Michelle is making some great, undeniable progress, Anna and John are looking into finding further resources and supports for her and their family. They really hope for Michelle to become more physically independent and to make advances in speech and feeding. Meeting and being able to speak with other families of children with ACC would be a huge benefit for this family as they could have a direct resource and better knowledge about future outcomes and goals.
John and Anna are also looking forward to participating in more of the activities and supports offered through Michelle’s early intervention program. Activities such as mom’s and dad’s nights and some of the social events are things they would love to do but unfortunately time commitments and scheduling conflicts have made it complicated.
As a final note, the family is interested in finding a feeding therapist/specialist and also would like to know more about hippotherapy and water therapy.

Snowflakes

The teachers at Taylor's school are so wonderful. They truly love Taylor and it is another gift that we treasure so much. For Christmas, they gave us a lovely photo of Taylor with this poem - it really meant a lot to David and I. It's such a good reminder that every child is special in their own unique way.

Snowflakes
By Anna MacPherson

Each one comes in a different light,
a different reason, a different night.
The brightest thing you'll ever know;
love for them will forever grow.
Everyone has a different face,
each of them their own special place.
It's in our lives they frolic and sing,
just seeing them smile is a beautiful thing!
A sparkling snowflake is truly unique
and we're watching them grow everyday of the week!
Open your hands and soon you'll see
what beautiful people these snowflakes can be.

Holiday update and Taylor the player

Tonight I am so grateful. I think I've mentioned how much I love the holidays. We have had so much fun the past few weeks - lots of holiday festivities, Christmas shows at the kid's schools, and general excitement about the upcoming week. The kids are very spoiled in that they have so much to look forward to - Christmas Eve with David's family, Christmas morning at home, and then off to Missouri for 10 days with my family. It's my favorite time of year and I love that the kids are equally excited.

Seattle is so fun for the holidays - we've ridden the holiday carousel, toured a Teddy Bear suite at the Four Seasons, seen a tremendous Gingerbread house display, met Santa, and had lots of fun preparing. The kids love the decorations at our house - my mom sent us a huge box of elves that we've had fun arranging around the house. The Elf on the Shelf continues to delight and the kids have had a blast wrapping presents and keeping secrets. They get so excited they can hardly stand it.

We celebrated David's birthday this week too - the kids made sure he had a great day and then he and I got away for the night while David's mom watched the kids. It was lovely to have a night away and so fun to come home to the kids - they really miss us and it's such a treat to see their delight when we come home.

Tonight I am also very, very grateful for Alison. She has been such a gift to us this year and we said good-bye to her today for the holiday break. The kids love her so much and she is special in so many ways to each of them. Taylor, in particular, just beams at her and it is so comforting to us to know that she loves Alison so much. Lauren today said "mom, Alison is the best babysitter - all of the other kids should have an Alison in their lives." Priceless, I tell ya...

Amidst the craziness, Taylor has trucked on, working hard. She is fighting a cold and still struggling with teething, but she is such a dear. David says I should describe how well Taylor has learned to "play us." Here is an example - last Friday I took Taylor to therapy. She has gotten funny about me coming to therapy - she is totally fine if Alison takes her and if I stay out of her line-of-sight. If she sees me at therapy, she whines and cries - like, "mom, can't you help me?" So, I've started to hide behind the door so I can watch her and she's happy as a clam. It's the same dynamic that I had with Lauren - for awhile I had to stop taking her to birthday parties when she was younger because she would cling to me for so long. She literally had more fun if someone else took her. Anyway, last Friday, Taylor had a bit of a cold and seemed tired. She was very fussy at therapy, so finally I told Susan I thought we should cut the day short. I load Taylor in the car and she immediately starts cracking up. She laughed the whole way home. When we got home, I said, "Taylor - did you trick mama?" She grinned so big and laughed every time I asked her. She has done a similar trick on David at her school - she will be sad at school and then the minute David picked her up, she started laughing. She loves us, which is precious, and while we don't like her to be sad, it is such a joy to know she loves us so much. We are blessed, blessed, blessed.

Sweet Lauren

Tonight I am so thankful for Lauren. I'm sure every parent thinks their child is the sweetest, but I really think Lauren is. Here are two recent examples:

1. Tonight, as we're saying prayers before bed, she says "mommy, I know what I want to be when I grow up. I want to be a helper." She wants to help people - simply and sweetly.

2. We saw Santa last week and she and Jacob told Santa what they want for Christmas. Lauren wants an American Girl Doll bed, a jingle bell hat, and for the second year in a row - a picture of Santa. I think she's testing him. Jacob wants a skateboard and a gun (!). I don't know what Santa thought about that. So, many nights later, she says to me - "mommy, we didn't tell Santa what Taylor wants." Really - how heartwarming that she alone remembered that nobody told Santa what Taylor wanted. Taylor, meanwhile, was not happy on Santa's lap and wanted nothing more than to be rescued - so David and I were focused on that and getting a cute picture of the kids - but Lauren, in her sweet way, wanted to make sure that Santa knew what Taylor wants too. I promised her we would go to see Santa again and tell him what Taylor wanted.

How blessed are we to have her as the older sister?

Christmas card trial and error

I love so much about the holidays, but trying to get the perfect picture of my three little munchkins isn't my favorite thing. It's nearly impossible to get everyone in a good mood, cooperative, and looking the right direction at the same time. None of these efforts made our Christmas card this year, but thought you would enjoy them anyway!