Examine & Re-Examine

It's hard to believe how much I've learned about a subject that I would have NEVER imagined I'd have to learn. That subject - cerebral palsy - and its ever-evolving, changing nature in my own child.

Vision problems are pretty common in children with cerebral palsy with a number of different manifestations for how these vision problems can present themselves in children including farsightedness, nearsightedness, strabismus and a whole host of other visual impairments. Nearly one year ago, I had Taylor's eyes tested for the condition of strabismus because I'd observed an occasional crossing of her eyes...the incidence of her eyes crossing only lasted for a couple of weeks and then went away and we haven't seen a crossing of her eyes since those first few observations. Her eye exam for the presence of strabismus last year also checked out just fine.

Well, in recent weeks, I have begun to observe what I would describe as a lack of depth perception in Taylor's vision. For example, navigating up/down curbs or maneuvering around objects on the floor at her feet appear to go unnoticed by Taylor which occassionally leads to her tripping or stumbling over things because it's like she doesn't even see them and shows little awareness of objects that reside below her direct line of sight. I talked to a couple of Taylor's therapists/doctors - her neurologist as well as her physical therapist and occupational therapist - and they validated some of my recent concerns with Taylor's vision. They agreed that it is probably a good idea to have Taylor's eyes re-examined to either verify or rule out any emerging or changing vision conditions because there is some evidence that both hearing and/or vision in children with cerebral palsy can become worse with age.

Taylor's neurologist described it in this way:

Children with cerebral palsy will often develop problems with visual concentration over time. Many of the children with Taylor's type of cerebral palsy have to expend so much energy and concentration on keeping their body upright, controlling their movements and coordination, etc. that they will often have little left over to use for visual tasks. For example, asking some children with cerebral palsy to hold their body in good alignment, look at a toy and then reach for that toy, might be like asking you to read "War and Peace" while putting a bicycle together while also serving your friends and family high tea. Now, I realize that's a pretty colorful, imaginative analogy, but basically, as the neurologist described it, we are asking the child to do too much at one time - coordinate and control their impaired motor movements while also visually focusing upon other tasks. They're things that "typical, normal" children and adults take for granted, but children with cerebral palsy have to exert far more effort and energy to achieve the same abilities.

So, I have scheduled an appointment for Taylor's eyes to be re-examined. I only wish that we could get her in right away...unfortunately, so many of the pediatric specialists Taylor sees always have VERY, VERY, VERY booked schedules and our earliest opportunity to get Taylor in for an eye exam is early June. Bummer.

Oh, speaking of specialists that Taylor sees, that reminds me...we have another orthopaedic surgeon appointment for Taylor in about two weeks. This appointment will give us an opportunity to meet with the surgeon and discuss any changes to Taylor's overall bone/hip structures and strategize on any new plans of action for therapy, surgery or otherwise.

"Mom, I Can Walk Like You"

I thought I would update Twinsanity readers on Taylor’s progress with walking since some of these posts related to Taylor’s cerebral palsy and her overall progress have become some of the more frequently viewed posts on this site.

We have been having some difficulty of late getting Taylor to wear her AFO’s. AFO stands for ankle-foot orthosis which basically describes an apparatus designed to support the ankle and foot. While these may look very intimidating at first glance and somewhat intrusive, they can make a world of difference in a child’s ability to walk and maintain flexibility of their Achilles tendon. They have made a tremendous difference in Taylor’s ability to walk and have helped her gain strength and proper alignment that she would otherwise struggle with as a result of her cerebral palsy.

- Taylor's AFO's -

So, as I was saying, lately it has become increasingly challenging to keep Taylor in her AFO’s. The other day, as I was getting ready to put Taylor’s AFO’s on her feet, Taylor looked up at me and said as if to object to me proceeding with the placement of her feet into the AFO’s, “Mom, I can walk like you.”

I paused for just a moment to reflect on that sentiment from my 3-year old and it occurred to me that for the first time, my dear, sweet Taylor was communicating to me that she understood that she was different. At that moment, I saw nothing else but Taylor's face looking at me expectantly awaiting an answer back to her and in all of about 5-seconds I assessed the perspective that Taylor must be having towards her AFO’s. My feet, as well as her sister’s, are always bare; hers are always donning something else, something unusual to her sister and to her mommy. Taylor also always observes me (and her twin sister) put on shoes that look quite different than hers and she now wanted me to know that she could "walk like me" and by that statement, I believe Taylor was also telling me that she wanted to be like me - bare footed and apparatus-free.

My heart literally sunk heavy into my chest, and for the first time, as I sat face to face with my daughter Taylor, I was presented with a moment that I always knew would come since Taylor was diagnosed with cerebral palsy – a moment when I would be faced with offering explanations to Taylor. My husband and I have often talked about the day when Taylor would begin to become more self-aware, to notice that she might be slightly different than her sister and her peers and we have often talked about what we might say to Taylor and how we might say it when that time comes. Well, despite how many times you talk about that day coming, let me be the first to say, you're never ready for that day to come...

When I heard Taylor say simply, “Mom, I can walk like you” - since it caught me by surprise - the words that came to me were: “Taylor, you’re right, you CAN walk just like mommy but guess what, these will help you walk even better than mommy.” (I especially emphasized "EVEN BETTER THAN MOMMY")

It was a tough and sad moment for me. Tough because I knew this was perhaps the first of many more similar sentiments and conversations to come with Taylor in the years ahead. Sad because, in that moment, I longed for my daughter not to HAVE to be different for her sake. It was also, strangely enough, a happy moment for me. Happy because no sooner had Taylor uttered her words to me about wanting to “walk like me”, it was as if God had long ago already placed the words in my heart that my daughter would need to hear at that exact moment. It was as if, God in all his wisdom and love, knew that this conversation would take place on Sunday, February 22, 2009, as Taylor and I sat together on the floor preparing her little feet and legs for her special shoes.

I was also happy because in that moment, Taylor was right and I was there to tell her so – that she absolutely could "walk like me" and that with her special shoes, she would "walk even better than me”. Taylor seemed to like hearing that and allowed me to put her AFO’s on…

In just the short 24 hours since Taylor and I had this chat, I have since observed Taylor to repeatedly take her AFO’s off. She pulls at the little velcro straps that cross over her little ankles and at her calves. She simply will not keep them on…she can walk without the AFO's, which is awesome, however it’s not the best thing for her to do because the AFO’s provide stability for her, improve her overall gait and protect the overall physiology of her legs. I have not made a big fuss the last 2 days about Taylor keeping the AFO’s on knowing that I see her physical therapist this Wednesday and I plan to talk with the physical therapist about this new development and the new resistance Taylor is showing towards her AFO's.

The physical therapist had prepared me many, many months ago that at some point, Taylor would begin to resist the AFO’s and that we’d have to work together on devising some creative strategies to help Taylor become interested in her AFO’s again. Well, that day of Taylor's resistance to AFO's has come. I am looking forward to talking with Taylor’s physical therapist this week as I know Taylor not wearing the AFO’s opens up a host of adverse consequences that can impact her mobility and gait including physical damage to her ankles, hips and knees.

More posts on this to come after I speak with Taylor's physical therapist, so if you're interested, be sure to check back again later this week....

Weekend Outlook

The weather is sunny and warm in Northern California today, and it's going to be sticking around through the weekend. Awesome. With the unseasonably warm weather to enjoy, I'm planning lots of outdoor excursions for Paige and Taylor. (Mike is planning a golf outing with "the boys" for Saturday - it's the first break in cold weather, so I should've known he'd be hitting the golf course - but, he works so hard, he deserves it). There's a great park for the girls and I to visit on Saturday while Mike is golfing....and Sunday and Monday, we can look forward to a field trip or two since Mike will have a 3-day weekend to hang with the family. Be sure to check Twinsanity after the weekend is over since there are likely to be some new pictures posted from our fun, fabulous 3-day weekend.

In other happenings, today we had a routine appointment with Taylor's neurologist. Her neurologist is "pleased" with Taylor's progress and remarked that he "sees a considerable improvement in her walking since the last appointment 3 months ago..." He also signed a new RX order for continued physical therapy in the clinic as well as continued therapeutic horseback riding for Taylor for all of 2009 while also instructing me that physical therapy will need to remain the "cornerstone of services for Taylor's treatment and management of cerebral palsy for several years to come." He also said that he doesn't need to see Taylor back again for 6 months since she seems to be making such great progress. Good news all the way around for Taylor and us today!

Bragabout Friday - Horseback Riding

Taylor, that little show-off. She's continuing to make some great progress in her horseback riding program. Today, working with her physical therapists, she started doing some new riding tricks - riding backwards, riding sideways and even standing up while riding the horse. I was thrilled to see Taylor standing up on the horse's back as the horse took several steps throughout the arena. Taylor was steady and her feet and legs were well-planted and she demonstrated great balance while standing on the horse. I thought to myself, "Now that's impressive....a little 3 year old tot perfectly poised and positioned atop a horse as the horse walks about...special needs child or not, that's a hard skill to master."

While the various positions on horseback are targeting and activating a number of different muscles beneficial to Taylor's physical therapy needs, she doesn't know she's "working" hard. All she knows is that she's riding a horse and that there are a lot of people and onlookers in the riding arena cheering her on as she rides backwards, sideways and standing up and she absolutely loves every moment of it.

Taylor riding "Popcorn" backwards.

Taylor getting into position to ride "Popcorn" standing up.

Taylor's up and riding high.

While Taylor was enjoying her riding lessons today, Paige and I romped about the ranch exploring the great outdoors. Paige was also getting some one-on-one wooing from one of the ranch-hands...although quite a bit Paige's senior, he was sure showering Paige with lots of wildflowers. I laughed and thought to myself, "what a foreshadowing this is. I'm sure there will be lots of woo-ing and attempts at winning over Paige as she grows up in the years to come, beautiful little girl that she is!"

Paige receives a wildflower, especially picked for her by one of the ranchers.

Paige petting and feeding "Dance".

Paige enjoying the grounds of the ranch.

Paige...and, she carries a big stick.

Taylor: Physical Therapy Progress Report

I have just returned from the mailbox and opened the packet containing Taylor’s quarterly progress report from her physical therapist. Listed below are Taylor’s previous goals and her achievements in these areas to date as noted by her physical therapist:

SHORT TERM GOALS:

Stand in good alignment without assistance – MET.

LONG TERM GOALS:

Develop movements to assist in transitioning from one position to another using good alignment and good trunk rotation.

PARTIALLY MET – Taylor is able to transition fairly quickly from position to position however, her physical therapist noted that she “continues to lack some strength and stability that provides for safety in a school setting where she could be easily pushed, fall and/or hurt herself.”

NEARLY MET – Taylor is able to come to a full stand through half-kneel with minimum assistance.

MET – Taylor is now walking independently (praise God) however her balance and posture continues to need improvement while walking; in addition, the therapist noted that “Taylor will face some safety issues both in the classroom and on the playground” making it imperative that Taylor continues to receive ongoing physical therapy until she has further mastered her walking and her balance while walking.

PHYSICAL THERAPY GOALS FOR 2008-2009:

The physical therapist has outlined several new goals for Taylor for the remainder of this year and early next year:

1. Taylor will build continued strength and balance when walking and will progress to running, hopping and jumping.

2. Taylor will gain continued trunk strength to do several 2-foot hops simultaneously.

While these seem like fairly small, easily accomplished movements, for Taylor, it's not.

We basically have to break down each desired goal and movement into great levels of the most minute detail and sequencing and then have to facilitate one muscle movement to another again using the right sequencing and form...it involves a lot of repetition to create just the right movement patterning so that Taylor learns to associate how one movement varies over another and how one movement has to occur versus how another movement does. As we do the movements over and over and over and over again, Taylor begins to create "muscle memory" so to speak in how to move, in how to coordinate her movements, etc. and over time (what sometimes, as her mommy, feels like a really long time), Taylor then begins to master the movement on her own in a way that is desirable and in a way that is "normal" looking. And, looking "normal" is always our underlying goal of every physical therapy goal and activity that Taylor is a part of.

I continue to be amazed at how far we've come and how much farther we still need to take her! I also continue to be amazed at the physiology of it all!!!!! The body truly is an amazing thing....

So, while I am really pleased with Taylor’s overall progress to date….because there was a time when I thought she might never walk…and she is now walking independently….there is still so much more work to be done!

The physical therapist is recommending that Taylor continues to receive physical therapy at the clinic twice a week to further improve Taylor’s motor abilities and to help her progress further towards overcoming her disability. (Of course, I am completely on board with that and am 100% committed to following whatever program Taylor’s physical therapist advises). Maintaining Taylor’s physical therapy, at such a young age, will only continue to help her build the right foundation allowing her to continue to advance and eventually successfully overcome her disability as well as keep up with her peers physically, educationally, emotionally, and socially.

Ups & Downs

Some of my friends have recently pointed out to me that I’ve been a little MIA lately. And, it’s true. If I owe you an email, a phone call back, or a thank you note, well, I am really, really sorry. We’ve had so much going on the past couple of weeks and I’ve been quite busy with daily life with the twins. I will get back to you…and you, and you, and you, and you. Eventually.

This week sure has been a week of ups and downs. First, good news at our neurology appointment for Taylor. Backtrack to the details on that appointment in this post here: http://ashley-twinsanity.blogspot.com/2008/10/taylors-neurology-appointment-update.html

That was on Monday, an up day.

Then came Wednesday, a down day.

Wednesday began with an appointment to our physical therapy clinic for Taylor where I had a chance to sit down one-on-one with Taylor’s physical therapist. I talked with the therapist about the recent meeting that I had with the school district and their dismissal of Taylor as “no longer eligible for physical therapy services” once she starts school because in their words: “Taylor’s doing great, looks like she’s doing so well.”

The physical therapist was livid; just as I have continued to be ever since my meeting with the school district last week. How is it that the physical therapist, Taylor’s neurologist and pediatrician as well as my husband and I all agree that Taylor is doing as great as she is ONLY BECAUSE she has been in a very rigorous physical therapy program for the past couple of years and that it is no coincidence that Taylor is doing as well as she is simply because she’s adapted or overcome all aspects of her disability on her own. That is just not the case.

The physical therapist put it in very plain words for me: “If Taylor doesn’t continue to receive the levels of physical therapy that she has been receiving in the coming years and if the school district does not make these resources accessible to Taylor in her early school years, she will most certainly regress, her leg muscles will stiffen, her range of motion will become limited....” Her therapist even said, “We could lose so much of the ground and progress we’ve made with Taylor that she could wind up in a wheelchair.” (GASP)

These words and references to a wheelchair by Taylor’s physical therapist, whose judgment and experience I wholly trust on such issues as child development, physical therapy for special needs children, etc., resulted in my having a little meltdown. I have remained a little discombobulated, a little freaked out and a little panicked…I have also felt sorry for Taylor, sorry for myself, and wondered why us, why so much to deal with (because there’s much more than just Taylor’s physical progress at stake, more that I just won’t go into right now, but more, more, more, much more).

Then came Thursday and I woke up feeling like, it’s going to be okay. We’ll get through this. Taylor will continue to be fine and continue to make progress in overcoming her disability. We’ll just continue to take things one step at a time, one day at a time. I took Taylor to her warm water therapy class today at Easter Seals where at the end of the session, I was informed that her swim services would likely come to a halt in December when Taylor turns 3.

I suppose that the school district has already begun making their rounds to Taylor’s service providers and Easter Seals too must have received the memo from the school district saying how “great Taylor is doing.” Arrrrgh.

According to Easter Seals, “there are children who may benefit more from our services than Taylor in the coming months.” And, then once again, I heard “Taylor’s doing great, she’s really doing well.” Okay, that confirmed it – they did get the school district memo!

I hesitated for a moment, then protested. I said in my kindest, sweetest voice, “I agree, she’s really doing well and I’m so happy to see that she’s making such good progress; however, I am very concerned that interrupting or discontinuing these types of services for Taylor too soon will have negative consequences and will halt Taylor’s progress significantly. We're going to need to revisit this issue.” Blah, blah, blah.

I then shared with Easter Seals what Taylor’s lead physical therapist shared with me….that without continued physical therapy services for Taylor during her early school years she will likely regress and may even be facing time in a wheelchair. The Easter Seals therapist understood my concerns and more importantly she heard me and said she would speak to her supervisors about what they might be able to offer to Taylor after she turns 3…so, now we wait and see. I am hopeful that Easter Seals won’t discharge Taylor from the program because they think she’s doing “so great”. Let’s really translate “so great” and just what that means….I believe it actually means that they think Taylor is doing “good enough.” Well, “good enough” is not “good enough” for my child! In fact, the "good enough" expression doesn't really exist in my vocabulary at all.

So, I am pressing on and continuing to fight the good fight for our little Taylor. I know that God only gives us that which we can bear. Somedays, particularly this week, I have found myself saying, “God, you have really overestimated what I can bear…” In the end though, I know that God will open the right doors and I am just praying and trusting that He will continue to help Taylor and make her much-needed physical therapy services accessible to her in the months and years to come. Of course, I'll be doing my part and fighting the school district and whatever other bureaucracies, including our insurance company, may rise up to impede upon Taylor's access to physical therapy services...and, in the end, that truly is all that my husband and I can do. Fight the good fight and keep the faith.

Transitions for Taylor

Today, I met with several service coordinators from the local school district to discuss Taylor’s cerebral palsy and her anticipated therapy needs as we begin to plan for her school-age years.

I had been anticipating this meeting for quite some time now. As I met with the school district personnel and service coordinators, I spent a good deal of time talking with them about Taylor’s disability, her medical history, her progress in managing/overcoming her disability, her challenges/struggles, and ultimately our goals for her in the future. The service coordinators and school staff, in turn, spent a good deal of time observing Taylor. They observed her gross motor skills (walking, jumping, climbing), her fine motor skills (holding crayons, coloring, manipulating small toys/objects), her language/communication, her self-help skills (eating, dressing, toileting, etc).

Taylor was noted to have...

- Age-appropriate fine motor skills. YAY!!!!
- Age-appropriate self-help skills. YAY!!!!
- Age-appropriate langugage/communication skills. YAY!!!!
- Age-appropriate social/recreational/play skills. YAY!!!!
- Delays in her gross motor skills, as we expected, due to the type of cerebral palsy she has.

After an extensive evaluation, the therapists determined that Taylor would not be eligible for ongoing services. Yep, not eligible.

Now, keep in mind, to this point, Taylor has been receiving ongoing weekly therapy sessions (physical therapy, aquatic therapy, occupational therapy, therapeutic horseback riding) for the past 18 months. To be told today, that Taylor will not receive ANY of these services once she begins school was very disappointing!

Now, on the face of it, you might be thinking to yourselves, “oh, well that must be a good sign…Taylor must be doing well enough that she doesn’t need the continued, intensive schedule of physical therapy, occupational therapy, etc.” That is not the case. The fact of the matter is that Taylor is doing as well as she is BECAUSE SHE HAS BEEN RECEIVING AND PARTICIPATING IN ALL THESE SERVICES FOR SO MANY MONTHS.

When I pressed the school district further, much to my dismay, they would not budge. I learned that the school district’s team of physical therapists and service coordinators are currently very understaffed, are currently only working part-time due to state budget constraints, have to serve 1/3 of the entire county in which we live, and as a result have a significant waitlist for pediatric services. At best, the school district informed me that they would only monitor Taylor’s progress by merely checking back in with Taylor for observation either one time every six months or one time every twelve months to simply update her charts and school records.

As Taylor’s mom, this is simply unacceptable. I am not about to truncate my child’s progress or hinder her abilities to improve and continue to overcome her disability because the school district is unable to provide continued treatment and therapy services for her. So, now I will continue to advocate to our insurance company for all the services that Taylor has been receiving and in my estimation needs to continue to receive. Thank God my husband and I have a good PPO insurance plan!!!! Between the various therapy services that average $150.00 per hour/5 times a week (that's $3,000 per month of therapy services), the purchases of her little braces to the tune of $1,500.00 each/purchased 2 times a year, our insurance company must really love us. Yeah, right! If the insurance company doesn't continue to provide for all these services, perhaps I will have to go back to work in order to help pay for these services...whatever it takes...whatever I've got to do....Taylor is not going to be short-changed with getting whatever she needs. As a parent, I must consider the rest of her life, the quality of her life. God has entrusted Taylor to Mike and me and charged us with the awesome responsibility of helping her to become all that she can be. We know that she can ultimately overcome her mild disability but not without continued hard work and dedication from both Taylor and a committment from her mom and dad to make it happen.

So, tomorrow I will begin the discussions with our insurance company to make sure that they will continue to provide these much-needed services for Taylor. I just pray that the insurance company will continue providing these services to Taylor. Over the past 18 months, she has made such incredible progress and I really believe that with continued intensive weekly therapy services during the next couple of years Taylor will achieve her maximum potential, complete motor independence and overcome her disability.

Exceptional Equestrian Tot in the Making

RIDE TO WALK

References to the physical benefits of horseback riding date back to some very early writings in the 1600s. However, when Liz Hartel of Denmark won the silver medal for dressage at the 1952 Helsinki Olympic Games - despite having paralysis from polio - medical and equine professionals really took notice. It wasn’t long before therapeutic horseback riding was being used for rehabilitation in England and later in North America. The first centers for therapeutic riding in North America began operation in the 1960s.

BENEFITS OF HORSEBACK RIDING FOR TAYLOR

The components of normal movement are very similar to those used in equestrian horseback riding skills and horseback riding lends itself especially well to physical therapy. Because horseback riding gently and rhythmically moves the rider’s body in a manner similar to a human gait, Taylor will achieve greater flexibility, balance and muscle strength enabling her to have an even better walk than she currently does.

We feel very fortunate that Taylor is currently participating in the ONLY program in the Northern California area that focuses exclusively on the therapeutic aspects of horseback riding for children. She starts weekly riding sessions, which will be conducted by specially trained physical therapists, this coming Friday.

Today, we took Taylor to get fitted for her very own custom horse-riding helmet. While Taylor was getting fitted for her riding helmet, Paige enjoyed checking out all the horse supply products including the bridles and bits. She also enjoyed squatting down in the riding boots/shoes section and looking at herself in the mirror. Finally, the visit concluded with both girls test-driving some of the many saddles on display in the showroom. We managed to leave the shop without tearing up the store or disheveling the shelves adorned with innumerable horse products.

Today's Swimming Therapy

Taylor has only been doing the aquatic therapy program for a few weeks now, but already I am noticing some big improvements in her overall walking and motor planning, not only during the swim sessions but following the swim sessions on dry land too.

This type of therapy is proving to be a great addition to her overall therapy regimen! She’s still getting all of the physiological, motor skills exercise and stretching routines that are achieved in her in-clinic physical therapy sessions each week, but the water therapy is definitely one of Taylor’s favorites because she doesn’t realize that she’s “working” and just thinks she’s playing in the pool. Once thought of as a ‘faddish cure’, water therapy, when combined with Taylor’s other physical therapy programs, seems to be netting significant benefits to Taylor.

Taylor is now showing improved coordination when walking independently and also when entering and exiting the pool. She is also improving her overall trunk/abdominal strength from all the exercises she’s doing while sitting on the kickboard in the water. Additionally, the swim therapist has been working with Taylor on improving her stair-climbing skills. This is a task that still presents quite a few challenges for Taylor on dry land. In the water, however, because of her weightlessness within the water and the warm water to keep her leg muscles relaxed, Taylor is now starting to walk up and down the stairs pretty efficiently in the pool. Today, she walked up 3 steps and only required minimal assistance from the therapist and walked down the same 3 steps with moderate assistance from the therapist. The challenge that Taylor is still encountering when walking down the steps is that she is not quite coordinating her weight-shift from one leg to the next. The therapist tells me that in time this will be achieved but it's one of the harder skills to acquire. In the meantime, the therapist is going to continue focusing on Taylor’s downward stair-climbing skills. The therapist has also recommended that we modify our house’s stair-rail system to a kid-friendly handrail which will make the stairs safer for Taylor when she's practicing walking up and down and to help facilitate correct form and movement patterns even further. Below is a picture of this kid-friendly stair-rail.

During today’s swim therapy, Taylor joined in a game with a few other tykes receiving therapy as well. She had a great time playing ball with them!

Coming To Terms with Big News & Learning to Find New Hope

During the past year, we have come to face some new challenges and struggles. In June 2007, we learned that one of our daughters did not escape the statistics that we were warned of by the doctors during my difficult pregnancy. More than 50,000 children are diagnosed with cerebral palsy every year. Our daughter Taylor was one of them. Taylor is a bright, exuberant little girl, who happens to have a mild form of cerebral palsy (known as diplegia) which has affected her ability to walk.

After the initial numbness of the news of Taylor’s diagnosis wore off, we began to actively seek out physical therapists who could help Taylor. Our search led us to an awesome pediatric therapy clinic in Northern California.

Beginning with Taylor’s very first physical therapy session, she has worked hard day after day, both at home and at the therapy clinic. In just a few short weeks after beginning therapy, Taylor began to use her leg muscles in a way that she never had before, and for the first time since the initial diagnosis of cerebral palsy, as her mom, I felt a sense of optimism and renewed hope.

Taylor at Therapy Clinic with Her Physical Therapist, Doing Some Warm-up Leg Stretches

About 3 months into physical therapy, Taylor was fitted with a pair of pediatric leg braces, and almost immediately started achieving new things. Wahoo! Taylor started standing! Taylor’s physical therapist pushed her to her physical limits, stretching and strengthening Taylor’s leg muscles every week.

Taylor Getting Fitted for Her First Pair of Braces

A few more months of rigorous physical therapy along with continued practice wearing the braces and Taylor FINALLY started walking! YAY!

Taylor at Therapy Clinic, Working on Her Form When Walking

Practice Makes Perfect! Taylor Continuing to Perfect Her Form When Walking

As we have celebrated these first milestones for Taylor this year, we are ever-mindful of the significant role that Taylor’s therapist has played in Taylor’s life in making these accomplishments happen.

Words simply can’t express the happiness, love and pride we have felt the latter part of this year as our Taylor has continued walking. It sounds like such a simple thing to do, but for Taylor it’s not and it hasn’t been.

Today, Taylor enjoys a newfound confidence in her ability to walk. She now needs very little assistance from us in order to walk and only occasionally needs assistance by holding our hands. Taylor will continue to see her physical therapist for several years to come and the outlook for Taylor’s future remains bright and promising. The best part — Taylor will eventually not need to wear the leg braces at all and will one day even be able to run with her peers on the playground.

Playing with A Friend at the Park

- Photo: Taylor (L), Samantha (R) -

What I have learned from this experience having a child with special needs is that you come to appreciate the lives of children impacted by a disability and the families struggling to manage their child’s special need. When it is your child’s life who is affected by a disability, it becomes your life too.

I have also learned that children with special needs are real fighters! Our Taylor has been fighting like crazy ever since the moment she was conceived and came into the world. Taylor’s struggle to overcome her disability and to walk has taught me the extraordinary resiliency that even the smallest of children possess and I’ve come to realize that life is truly precious, something worth fighting for and that as a parent, you’ve got to do all that you can to make it count.

On the flip side, some of the experiences I’ve had first-hand as a mom having a child with special needs has taught me that at times it can be an isolating experience. Our family has had to stretch ourselves in many ways in order for us to deal with our child’s disability. My husband and I, who are both fairly private people, have had to learn to be more open and learn to talk more freely about our feelings as well as our daily struggles raising a child with special needs. Through this experience, I have also met a great number of other parents and families who are facing their own set of challenges in raising a child with special needs and have enjoyed the almost instant bond and understanding that comes with identifying with one another through our shared set of difficult experiences. These are the parents and friends who I have found truly understand the disappointments, frustrations and roller-coaster ride of emotions that come with raising a child with special needs. These are the folks who have helped make this un-chartered journey of raising a child with special needs more bearable because I’ve come to learn that while these other families are trying to manage and cope with their own challenges, they’ve also helped me to see that the difficult and overwhelming roles and responsibilities we must play in our child’s life also yield some HUGE benefits for us as parents and the impact that we have upon our child is likewise HUGELY rewarding!