When It's Personal, It's Significant!

As President Obama pushes for passage of his first major domestic policy change, I've once again pulled out my activist hat and have spent considerable time in recent days in correspondence to my California State Senators and California Congressional Representatives. Some have received emails from me, some have received phone calls from me, some I've left voice messages for, while still some I've had the good fortune to actually speak directly to their staff members to voice my concerns (granted, these were only after waiting on the phone for as long as 30 minutes due to the sheer volume of calls the State Senators and Congressional Representatives are receiving on the healthcare debate, but it was well worth my time to wait it out in order to speak live to someone). It's one of the many perks of being a stay-at-home mom - you can become more involved in grassroots efforts and activism in issues and causes that are personally significant to you and you can dedicate a portion of your time (in your "spare" time) to making your voice heard.

The Affordable Health Choices Act of 2009 - which in my estimation based on what I've researched and read amounts to little more than nationalized medicine that will result in inferior patient care from doctors around the country as they are innundated with new patient lists, waitlists for existing patients and as a result, are forced to ration health care.

In the words of one doctor, "This is war," says Dr. George Watson, a Kansas physician and president-elect of the American Association of Physicians and Surgeons. "This is a bureaucratic boondoggle to grab control of health care. Everything that has been proposed in the 1,018 page bill will contribute to the ruination of medicine." Another telling statement which caught my eye was that from the Mayo Clinic, the non-profit organization and internationally renowned medical group, in which they stated, "Although there are some positive provisions in the current bill - including insurance for all and payment reform demonstration projects - the proposed legislation misses the opportunity to help create higher quality, more affordable healthcare for patients. In fact, it will do the exact opposite." (July 16 statement from Mayo Clinic web site).

When It's Personal Folks, It's Significant...

This issue is personally very, very significant to me and my family. As many of you know, family, friends or otherwise, who follow this blog fairly regularly, one of our twins has a mild disability (cerebral palsy) that has impacted her ability to walk and to coordinate some of her overall motor movements. For the past 3-1/2 years, our family has provided Taylor with the best specialists and doctors that our private insurance plan could offer to her in an effort to give Taylor every opportunity to live her life to the fullest potential and with the level of dignity and care that she deserves. Often our commitment to maintaining our private insurance plan has come with hard choices and personal as well as family sacrifices. Could my husband and I use the $300.00 - $400.00 per month that we pay out of pocket to our health insurance plan for something else? Certainly, but we choose not to. We choose not to tradeoff the quality of our healthcare for our children, particularly Taylor, and at times, it's not been easy but it's always been worth it. When Taylor has suffered a seizure as a result of her cerebral palsy, we've been able to schedule the necessary tests - EEGs and MRIs - without delay or a moment's hesitation. When Taylor has needed a consult with her pediatric neurologist or pediatric orthopaedist surgeon, or team of physical therapists, we have always been able to access them in a timely manner, sometimes appointments were made within the same day, within 24-hours, or at worst within a week or two.

The government takeover of the practice of medicine is going to ultimately threaten all of this! The government takeover of medicine is going to destroy the private health insurance which our family, and our daughter Taylor, has relied upon in our hours of need. I fear the rationing of the healthcare services, the long lines, and the lost access to the specialists and physicians which Taylor has so desperately needed and will continue to need for years to come. What happens when Taylor needs to be fitted for a new pair of leg braces in order to walk and she is unable to be seen or even scheduled for an appointment with her orthopaedist for six or more months? What happens when Taylor has another seizure and needs to have her dosage for anti-seizure medication adjusted and she is unable to be seen or even scheduled for an appointment with her neurologist for six or more months? Our little girl's life is literally at stake, her future well-being, her ability to thrive and to live a full life to her greatest potential is at stake.

While I know that there are millions of families who desire healthcare and who have their own personal stories to tell in this healthcare debate, I also know that for those families who face special medical circumstances raising special needs children and who day in day out do the best they can to care and manage the extenuating health issues of their loved ones, this debate is largely an open/shut case for us. The families I see each week in Taylor's physical therapy sessions who are wrestling and managing real quality of life issues don't want to lose their private insurance healthcare that gives them instant and open access to the doctors and specialists they need. The mother of the little boy, whose name is Cody, who sits in a wheelchair and relies upon feeding tubes whom we see each week at one of Taylor's therapy appointments would tell you the same - what do we do when our little boy needs a new feeding tube placed in his stomach in order to maintain his proper nutrition? Do we wait six or more months? Do we just sit idly by and watch the medical needs of our child become further compromised? And, only after waiting six or more months for the consult to be seen by the gastroenterologist, do we then have to wait another six or more months in order to schedule the surgery to replace the feeding tube?

It's against this backdrop and within this context that I have done what I can in recent weeks to protest the passage of the Affordable Health Choices Act of 2009. I protest its passage for my family and my children but also for the millions of other families who are likewise being threatend with losing the quality healthcare that they've needed for their families and their special needs children. In closing today's blog post, I would like to ask that if any portion of this message resonates with you - perhaps you have your own extenuating personal or family medical circumstances that requires timely access to specialists, perhaps, like us, you are raising a child with special needs who won't fit the cookie-cutter health and wellness checks offered under the new nationalized public health plan - then please contact your local state senators and congressional representatives. Don't delay, and make your voices heard.

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.

The Sweet Irony of It All

Today’s doctor visit brought new personal meaning to me of the familiar expression “labor of love". Oh, we’ve all heard that expression at some point throughout our lives referring to those acts we do, often for others, because of love. For the past 3 years, I have come to refer to Paige and Taylor affectionately as my little “labors of love” because in certain seasons of our lives together to this point, we’ve faced some difficulties to be sure, but even the most difficult of tasks over the past 3 years have seemed easier to me because they have been done as part of the “labor of love.”

Well, today, a new irony on this expression has come to bear fruition in my life. After having some recurring neck / shoulder pains in recent months and after self-treating these pains myself at home have proved futile, I finally decided to make a doctor appointment to have my neck / shoulder looked at…well, following an in-office exam, the doctor confirmed that I have developed an “injury” to my neck and shoulder that is, in his own words, “likely due to a culmination of the daily management of twins for the past 3 years, but more specifically the management, handling and care of a special needs child.”

And, I couldn’t disagree. I have found over the past 1-1/2 years, the sheer weight of a toddler, when combined with the repetitive therapy activities that I do regularly with Taylor, the continuous lifting and re-positioning movements required by me to help facilitate more appropriate, more normal movement patterns for Taylor, plus just the sheer handling of Taylor on a daily basis, from getting her dressed, to helping her achieve pottying, to getting her undressed, to bathing her, etc. has begun to take its physical toll on me. On more than one occasion as I have been helping her balance and shift her weight from one leg to the next while dressing or while getting in and out of the bathtub, I have felt a shot of pain in my neck and shoulder, but just continued to push through it. Well, it seems that it’s finally beginning to catch up to me. And, yet, I would not change anything about what I am doing for Taylor on a daily basis, or what I have done to this point in time. She and Paige are my “labors of love”. As a mother, when you have a special needs child who is not solely independent, by no fault of her own, and who is unable to rely on her own abilities, then you do what you have to do regardless of the toll that it may take upon you...

I left the doctor’s office today with a Rx for anti-inflammation of my neck and shoulders, plus get this, a regimen of physical therapy exercises for me to do at home to help re-build and repair my neck and shoulders. That's right - physical therapy exercises. Oh, the sweet irony of that…that the “labor of my love” in helping Taylor to ambulate and to achieve her own motor abilities through the many at-home physical therapy exercises I’ve done over the past year with her has resulted in me needing physical therapy now as well. How ironic. So, for now, I will continue to do all that I do and need to do for Taylor – she is my “labor of love” - but I will also begin to take some time to care for myself too and if that’s physical therapy for me too, then she and I will do our physical therapy together because after all, we are on this journey together and that’s what we do as we labor in love.

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.

A Little Personal Reflection & Waxing Poetic

I came across a mother today at one of Taylor's therapy appointments whom I struck up a conversation with. During our hour-long chat in the clinic's lobby, I learned a lot about her and her child. Her child, as I learned today, was born at 25 weeks premature weighing less than 2 pounds. Her baby spent more than 3 months in the hospital NICU in a daily, hourly struggle for his little life for the entire duration of his stay in the NICU. He faced multiple surgeries, experienced several brain bleeds and suffered from retinal bleeds while in the NICU. I also learned that the little boy's mother had been told that he would never walk, never see, never talk, never be able to feed himself, never experience life as most children and adults experience life...and that was just the beginning of the struggles he would contend with in life. It was a truly heartbreaking story.

Fast forward to 3 years later...

Today, as I sat and listened to this mother tell about her child's diagnosis and his difficulties and learned about her little boy who had been given such a dismal outlook on life, you'd think that the little boy would be in quite a state. Well, I was amazed at what I saw before my eyes considering his early beginnings in life. Here was a little boy who was not only walking, but talking and laughing and doing what appeared to be what any other little 3 year old might do. And, that whole diagnosis that he would never see, heck, the little boy wasn't even wearing glasses!!!! It was truly incredible to learn this mother's story and that of her little boy. It served as a powerful reminder to me that God can do amazing things - things that defy all medical diagnoses, predictions and statistical outcomes for children born prematurely and with disabilities. I know I have witnessed the hand of God in my own little Taylor's life and have seen Him at work in her life these past 3 years...and, I am so very thankful for his presence in Taylor's life. I simply don't know where Taylor would be without a lot of prayers and God's help and mercy!

As I left the clinic today with Taylor, I was reminded of just how blessed and privileged I am to have a child with a disability. Yep. You heard me correctly. That's not always been something easy to say or come to terms with...there have been many times where I have found myself asking God, "why us?" while at the same time reasoning back to God that He has really overestimated me on this one, that he somehow misjudged what I could handle. But, as I talked with this other mother today and as I listened to her story, I felt God quietly whispering in my ear and I couldn't help but recognize that God had planned this all along, not only for me but for this young mother also (as well as the thousands of other mothers who have been hand-picked by God to love and raise such special children).

It was as if God had destined this other mother's little boy to come into the world very early, struggle for his every breath, his very life for many months only to remind us that God is ultimately in control. No matter what the doctors said to that young mother, no matter the discouraging, hopeless news she received, she loved that little boy in a way that only a mother could. She hoped against all odds. She saw that little boy's promise for life and his potential though the medical "experts" said otherwise! She persevered and persisted with the little boy's therapies, day after day, and now 3 years later, he is a real miracle!!!!

Finally, as I have reflected upon this little boy a little more today and my own little special needs child, a poem I once came across popped into my mind. Tonight, I did a little hunting and pecking on the internet in an attempt to find it and read it again. And, voila, I found it. I am posting the poem below as an encouragement to all other mothers out there who, in the midst of life raising a special needs child of their own, might like me forget just how truly lucky and blessed we really are!

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,

a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of special needs children.

Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over Earth

Selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew."

"Forrest, Marjorie, daughter. Patron Saint, Celia."

"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a special needs child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give such a child a mother who knows no laughter?

That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.

Once the shock and resentment wear off she'll handle it."

"I watched her today.

She has that sense of self and independence so rare and so necessary in a mother.

You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive.

Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word.

She will never consider a step ordinary.

When her child says momma for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see

Ignorance, cruelty, prejudice -- and allow her to rise above them.

She will never be alone.

I will be at her side every minute of every day of her life

Because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles. "A mirror will suffice."

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.

The 10 Commandments for Parents of Special Needs Kids

Just the other day, I came across what I'll refer to as the "10 Commandments" for parents of special needs kids...since some of the readers of Twinsanity are personal friends and acquaintances of mine who I also know wrestle with the daily struggles and challenges of raising a child with special needs, I wanted to post these "10 Commandments" on the blog as a simple reminder to all of us parents of special needs kids that while our days are hectic, our demands many and our schedules chock-full of doctor appointments, a myriad of therapy appointments for our child and the like, we have the unique privilege of raising one of God's blessings.

In fact, one friend of mine sums it up nicely stating that, "God only gives children with special needs to those parents He knows can truly handle it and who will help these children thrive....it takes a special parent to raise a special child."

10 COMMANDMENTS FOR PARENTS OF SPECIAL NEEDS KIDS
- Author Unknown

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow her, encourage her, expect her to develop to the best of her abilities.

3. Find and celebrate positive mentors: other parents, friends and professionals who can share with you their experience, advice, and support having walked in your shoes as a special needs parent or advocate.

Personally, I have found this to be one of the most important components to helping me raise a child with special needs. I have become friends with many of Taylor's physical therapists....I respect their advice and their wisdom as well as their experience and have found great comfort and strength in their friendship! I have also met a good number of other mothers who, while their child may have a different special need to contend with, share a very common language and experience in the joys and challenges of parenting a special needs child that I do. That commonality and our shared experiences raising a child with special needs is simply unmatched!

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because she gets more of your time.

This can be especially challenging for those of us who have more than one child. In my experience, juggling the demands and needs of Taylor while also striking a balance with Paige's interests and activities represents another interesting dynamic in our family life. Making sure that Paige is not lost in the shadows or shuffle of Taylor's many doctor appointments and therapy appointments each week is a high priority for me, but admittedly it is also one that is very difficult to achieve.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends, the public or anyone else for that matter.

AMEN. Enough said. This 6th commandment is pretty liberating, eh?!

7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have already accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that many, many others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

I would also submit that a good, hard run or rigorous work-out at the gym helps too!

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.

Is It Really Over?

Summer. Is Summer really over?

Where did the time go? I swear I ask myself this question more often than ever before – ever since the twins joined our family. It seems like just a few weeks ago that I was shopping for summer clothes and flip-flops…now, it’s time to start thinking about fall, birthdays, vacations and holidays. Soon we’ll be relegated to staying indoors more too. Bummer.

Speaking of Fall, I am scheduled to meet with some service coordinators from the local school district in October to discuss Taylor’s cerebral palsy, her therapy needs and the like. This is going to be a reality check for me, I know. I’ll be visiting some new clinics and meeting with a whole host of new therapists. I will also see new children. Children of varying degrees of special needs and disabilities. I imagine that there will be some children who will look a lot like Taylor – children who wear little braces on their legs. I imagine that I will also see some children who will remind me of Paige. These will be the children who show no obvious signs of developmental delay or disabilities but perhaps they have autism, a speech impediment or other special need. I imagine that I will also see some children being pushed in wheelchairs and walking with walkers and other special equipment. I think it will be another experience whereby I am once again reminded that Taylor is not a typical child and yet strangely enough I will also be again reminded that we are still very blessed and that it could be much worse. I am anticipating that this experience will be one of my more eye-opening experiences so far because I will again be encountering a brand new environment where there will be a good many children with special needs.

As I write this blog posting, I feel I must stop. I’m sure that I don’t even really need to clarify this, but will since I’ve already started down that path. I am very aware of how fortunate we are and how good we really have it, in the sense of Taylor’s disability. I feel very lucky to know that in this day and age, the possibility of Taylor growing up and living a very typical life is in her future. It’s going to continue to be a lot of work for her to overcome her disability but we have the hope that she is going to! And, of course, I'm not naïve….I know that the parents of children with other disabilities whom I know personally have far, far greater struggles than I do. However, I'm not one to compare myself to others. I never like to think that I've got it better, or that they've got it worse. I suppose it's all in what we know and what our personal experiences are or have been in raising a child with special needs... for example, I've never had a child with autism, I’ve never had a child with down syndrome, etc. so I won’t even pretend to possibly know what it’s like to be in another parent’s shoes who is caring for a child with another form of disability. I can only empathize and try to imagine but I know that I can’t truly appreciate or fully relate to their daily struggles. That said, it’s still hard at times….so, please bear with me as I talk about my experiences and how hard some days can be.

Anyways, back to the school district/therapy meetings...

I am hoping that I like the school environment and the services that are offered through the school district for Taylor. I want to feel confident and secure that in whatever environment that Taylor is in she is challenged, accepted and respected. I’m going to be looking for that perfect fit for her and want to know that she will be well cared for by the therapists that she will see at any new clinic or schools she’ll be enrolled.

I’ll keep you all posted as the upcoming school district meetings and any transitions in Taylor’s services begin to occur. I am nervous about this change in Taylor’s care and in her therapy programs but remain optimistic that the right people will come into Taylor’s life to help her further.