Wheelchair Acceptance

Well, yesterday was an extremely emotional day for our family. Though some of us handled the news better than others. It wasn’t a total surprise when Natalie called me to let me know the news. Hailey’s PT recommended that Natalie contact children’s hospital about getting her a wheelchair. There has been talk about this in the past, so I don’t know why it hit me so hard, but it did. Like a ton of bricks. I was at work and I just couldn’t wrap my head around it, I couldn’t get myself together and I felt awful when my waves of emotion took the place of getting my job done, but I couldn’t concentrate, I just wanted to go home and go to bed, put the covers over my head and wake up in the morning and discover it was all a bad dream. I felt compelled to drive over to Natalie (because I know she was feeling it even more than me) and hug her and let her know that everything was going to be o.k. Little did I know that she was already headed over to my house with Hailey. She said she was in the neighborhood, but I think that subliminally, she wanted to be with people who love Hailey. She knows that she can always count on us for support. We have all been through so much together as a family. I guess I kind of secretly hoped that Hailey would get to a point where she would be able to walk with assistance, and that one day the only thing that she would need would be help from a canine assistant. So to here from a professional that this is not the case, it just knocked the wind out of me. Now that I have digested and regurgitated the news, i’m o.k. with it. Why wouldn’t I be? As my husband says “Hailey is still the same beautiful girl today, as she was yesterday and will be the same beautiful girl tomorrow” I know this is true. So, as I usually do when I hear new developments about Hailey. I get on the internet and I talk to my blogger friends, the people who understand first hand about what is going on in our lives, because it is also going on in theirs.(special thanks to Cary from about the small stuff) I have to constantly remind myself to stay focused on the positive and not let these barriers swallow me up, and to remember that wheelchairs are just a good way of getting around if a person has trouble walking. I also know that there are others out there who do not have the mobility to use a wheelchair and I should be grateful that Hailey is a candidate for one. Just because Hailey will be using a wheelchair does not mean that we are giving up hope, that one day Hailey will walk. We will continue to challenge her to reach her own personal potential, whatever that may be.

There are just so many unanswered questions: I wonder if Hailey will use a manual wheelchair, or if she would be better suited with a power wheelchair? Will her motor limitations allow her to maneuver the controls like a joystick, or will she have the strength to push herself along. She will have to get used to it in school, at home, travelling etc. It will be quite different. I wonder about how the wheelchair will transport? If we need some kind of conversion van, or lift. I wonder if we will eventually need a wheelchair ramp? I wonder how Hailey will adapt to using this new mode of transportation? My sense and my hope is that she will adapt fairly well. Her strength, determination and perseverance will be tested once again. As I have said so many times before, I believe in Hailey, she has led the way for our family on this uncertain path this far and she will continue to lead us down this bumpy road, only this time she will be doing it on wheels!

"I know a great store that has countless toys for kids with special needs"

It's that time of year when i'm asked on a regular basis "what are you getting Hailey for Christmas", or "what can I get Hailey for Christmas" "can she play with regular toys" "How about puzzles, does she play games" "does she still like books" ????????? It's because of the many questions I've decided to write a general guide to help others who may have someone in their lives with motor issues know where to buy and understand what they may like and be able to use. First of all no toys please, just money for her well needed and very expensive hippotherapy lessons, just kidding! First off I would just like to say that Hailey likes alot of the same things that other 4 year old girls like. She loves to play with her dolls, just the other night, I was playing with her in her bedroom, she lined up all her doll babies, stuffed winnie the pooh, elmo, mickey mouse and dora. (Hailey doesn't walk so she spends alot of her time on the floor) With my help,she covered each of the dolls with little blankets (well really anything textile that she found on her bedroom floor, things such as, nightgowns, sweaters, coats, towels and the like). After her babies were all tucked in, she dragged her basket of goodies over and carefully but with much effort, gave each baby a piece of pretend fruit. This took over an hour but it was then I learned that Hailey was a nurturer, she made sure that each baby had their nourishment. There were bananas, tomatoes, cucumbers, apples, and oranges strewn about on the floor next to each of them. In this respect, I'd say Hailey is like other 4 year old girls. As far as other games and puzzles that Hailey likes, they really have to be well built, made of hard plastic or wood,otherwise, because her fine and gross motor issues, she will destroy them. An example of what not to get her would be...anything paper, books, cards, crayons, etc. Or anything that requires you to hold on to in a controlled fashion or with small pieces, these types of things will be destroyed in minutes she doesn't have the control or motor skills to turn the pages of a book without tearing them, or she would crumple a card when she makes an attempt to pick them up. Small pieces are difficult to grasp etc. These are all things that we work on but are extremely difficult for Hailey to achieve. Natalie and Tom believe the best place to buy Hailey's toys from is Lakeshore Learning, they have store locations from coast to coast as well as a full service web site. Here are a few examples of toys that Hailey or someone with motor issues would enjoy.

Though I believe Hailey is getting too old for these now, she enjoyed them last year and this is the type of durability I am talking about.

Giant Knob First Puzzle Set Little hands have no problem piecing together these adorable puzzles! Each simple puzzle has 4 wooden pieces with giant, easy-grip knobs—so they’re a cinch for kids to grab and fit into place. And, with matching illustrations right on the puzzle boards, they couldn’t be better for beginners! Four 9" x 9" puzzles come in a handy wire rack. EE439 • $39.95

Hailey had something similar to this last year, the large plastic cookies are a bit easier to grasp, as we helped her put her cookie in a slot the jar counted for her, she loved it! Count-A-Cookie Number Jars Tots fill up cookie jars with tasty-looking treats…and build counting skills—piece by piece! 5 wipe-clean vinyl jars are labeled with numbers 1-5 and come in graduated sizes to build number sense and reinforce one-to-one correspondence. Kids match the cookies to their color-coded jars, counting each one as they drop it in! Largest jar is 5"; with 15 cookies.$32.99 It is difficult for Hailey to hold a ball, she doesn't own these, but I believe these are something that she could grasp.

Easy-Catch Playballs - Set of 4 Put a fun new spin on active play games with our easy-to-catch playballs! The playground-tough neoprene balls have a flexible woven design that gives children endless ways to grab and throw them—ensuring frustration-free play for players of all sizes. 4 balls, each 7 1/2". CE255 • $39.95 I think Hailey really responds to music, these are a good example for someone a bit younger than Hailey, I think it would be a great way to keep them moving their arms.

Easy-Grip Jingle Bells - Set of 8 With our easy-to-play bells, little ones always enjoy no-fail music-making! Each one has an extra-chunky plastic handle to give children a sure grip, plus three securely attached metal bells that jingle with every shake. They even come in cute animal shapes that kids are sure to love! Set of 8 easy-grip bells; fish is 4 1/2" long. DB952 •$24.99 Hailey loves to be read too, I wonder if she would like these

Differing Abilities Book Set Kids learn why some children wear leg braces, how deaf children communicate, what it’s like to live with autism and more. 5 books, each 24 pages. AB358 • $29.50 She doesn't have these, she doesn't play with figures yet, I guess I posted them because I love them and think that it is a great idea to have figurines of people of different abilities.

Lakeshore Block Play People with Differing Abilities Increase the diversity of your block play community by introducing our figures with differing abilities! Made of extra-tough vinyl, the dolls represent a variety of ages, ethnicities and genders…all with super-realistic details and adaptive equipment—from leg braces to a hearing aid. Tallest is 5 1/2". Set of 6 figures shown. RR759 • $19.95

I like this because Hailey can reach it, but since it is so expensive, I just might buy the magnetic shapes and she can play with them on my refrigerator, she "W" sits lot ( I know, I know, we try to correct her, easier said than done) ans she can reach the lower part of the fridge.

Stand-Up Magnetic Design Center Our magnetic design center is so big, children can stand side by side while they create colorful magnetic patterns! Double-sided center features two giant magnetic write & wipe surfaces, plus a sturdy base to store magnetic shapes. Wooden center is 21" x 32" tall. Easy assembly. LA583 • $79.95 Jumbo Magnetic Design Shapes 40 giant wooden shapes include circles, squares, rectangles, triangles and more. Large squares are 4". LA585 • $29.95 Hailey loves her pretend fruit, this wooden set is very durable

Fruit & Vegetable Cut-Ups Our fun fruits and veggies let kids cut, slice and dice like real gourmet chefs! 18 plastic play foods stick together with hook & loop fastener, so kids can safely “slice” into each one…then press them together and start again! With 2 safe “knives” and cutting board—all in a 10 3/4" basket. FV526 • $29.95 Last year Hailey received this gigantic peg board game from her Uncle, she needs lot of assistance when she plays with this, but she enjoys "trying" to stick the peg in the board!

My First Pegboard Set As tots fit chunky, baby-safe pegs into our fun-shaped pegboards, they explore color matching, develop eye/hand coordination & build muscle control! The big, 9" x 9" pegboards are made of soft, flexible foam…and the jumbo pegs are 2" wide, so they’re a cinch for small hands to grip. Includes 4 boards & 40 pegs. DD645 • $29.95 These are just a few of the many awesome toys that Lakeshore Learning has to offer. Whether or not you have a child with special needs, This store has toys that are strong and safe. It is definitely worth checking out!

Hailey's first Hippotherapy session!

So today was Hailey’s first hippotherapy lesson! We had been slightly anxious about how she was going to react. If Hailey doesn’t like something or doesn’t want to do it, her scream can be quite piercing. We really wanted her first lesson to be a good experience. We had our first visit to the stables earlier this spring, Hailey seemed to love the horses, but of course seeing them and riding them are two totally different experiences. Natalie had also been preparing her all week by showing her videos and pictures of children riding horses. I think the combination of the two really helped because Hailey did awesome!

A lot of my family and friends still don’t quite understand what hippotherapy is, so I took this off of The Bridge Centers web site. I hope it helps.
After you learn more about hippotherapy, head on over to read the article I wrote for Windrush Farm about how horses help with other disabilities as well.

About Hippotherapy
What is hippotherapy?
Hippotherapy is a physical, occupational and speech therapy treatment strategy that utilizes equine movement. The word “hippotherapy” literally means “treatment with the help of the horse” from the Greek word “hippos” meaning horse. Specially trained physical and occupational therapists use this treatment for individuals with movement dysfunction as part of an integrated treatment program to achieve functional outcomes.
In a controlled hippotherapy environment, the horse influences the rider rather than the rider controlling the horse. The rider is positioned on the horse and actively responds to his movement. The therapist directs the movement of the horse, analyzes the rider’s responses, and adjusts the treatment and horse’s movement accordingly. Specific riding skills are not taught (as in other therapeutic horseback riding programs), but rather a foundation is established to improve neurological function and sensory processing. This foundation can be generalized to a wide range of daily activities.
The unique nature of hippotherapy allows the rider to engage in activities on the horse that are enjoyable and challenging.
Why the horse?
A horse's walk and gait provides movement (or “sensory input”) that is variable, rhythmic, and repetitive. The resulting responses from the rider are similar to human movement patterns of the pelvis while walking. The therapist can observe and grade the degree of sensory input to the rider, and then utilize this movement in combination with other treatment strategies to achieve desired results. Riders respond enthusiastically to this enjoyable experience in a natural setting.
What are the benefits of hippotherapy?
Impairments that may be modified with hippotherapy include:
• Abnormal tone
• Impaired balance responses
• Impaired coordination
• Impaired communication
• Impaired sensorimotor function
• Postural asymmetry
• Poor postural control
• Decreased mobility
• Limbic system function related to arousal, motivation, and attention
Functional limitations that may be improved with hippotherapy:
• Gross motor skills such as sitting, standing, walking
• Speech and language abilities
• Behavioral and cognitive abilities
Who performs hippotherapy?
Therapists who perform hippotherapy are actually physical, occupational or speech therapists. Hippotherapy is the treatment strategy used by these skilled practitioners to achieve functional outcomes.
Does the therapist work alone with the rider?
Therapists performing hippotherapy normally work with a horse handler. This individual is charge of the handling of the horse during the treatment session. The handler has received extra training in handling horses specifically for hippotherapy.
How is a hippotherapy session different from Therapeutic Riding?
Therapeutic Riding is a general overall term that has been used for many years to encompass the variety of equine activities in which people with disabilities participate. When a therapist specifically utilizes the movement of the horse as a treatment strategy to improve neuromuscular function it is referred to as "hippotherapy

Just a little reminder:

Sometimes words and actions can be hurtful. Being the grandmother of a beautiful little girl who just happens to have C.P. I am reminded everyday how words can be hurtful, more often than not these words are not meant to be offensive, or hurtful, it is simply the lack of understanding.
So I thought I would just subtly remind people to choose their words a bit more carefully. I can’t tell you how many times in a week, Hailey comes up in conversation (well, hundreds of times actually, after all I am a proud Grammy). Very often when I happen to see or hear from someone that I haven’t heard from in years or perhaps it just comes up in general conversation that Hailey has C.P. It never fails, the dreadful words slip off their tongue effortlessly and without much thought “...Oh, i’m so sorry, that must be so difficult, is this something that she will grow out of” or how about this one...she will never have a good quality of life. Though I am well aware that her quality of life will be compromised, the reminder is unnecessary and I chose to focus on challenging her everyday and promoting her independence. These are the kinds of things that will benefit her best. I’ve heard people say that people with C.P. and other disabilities are not normal, and I can’t help but wonder who decides what “normal” is.
As defined in Wikipedia... In behavior, normal refers to a lack of significant deviation from the average. The phrase "not normal" is often applied in a negative sense (asserting that someone or some situation is improper, sick, etc.) Well, Hailey is not improper at all. Actually her actions happen to be more proper than the people who ask these silly questions or make these remarks without thinking them through. Now, don’t get me wrong, I am not saying that I didn’t do or say similar things before Hailey was born. I had no idea what to say or how to act around others who had a disability. But now I know better, and I want you to know better too. Always be aware of the impact your words can have on others. Teach your children that it is o.k. to talk to people who have a disability, otherwise you are not only sending my child the wrong message, but your child as well. I think it is all in the education, it is the process by which society deliberately transmits its accumulated knowledge, skills and values from one generation to another, so please, pass it along.

Conductive Education at The CLC

The Conductive Learning Center
Grand Rapids Michigan

Well friends, I have to say...The four week experience that we had at the CLC just may have changed our lives and our outlook on life forever! The people who work there are so dedicated and obviously devoted to the children who attend the center. Whether they are there for one session or if they are attending full time, the approach is the same and the goal is to promote independence. It concentrates on developing and improving gross motor skills such as learning how to sit, walk and hold on to large objects, as well as fine motor skills including learning how to hold a pencil and eat and drink. Many parents are surprised to see their child sitting on the potty for the first time.
The curriculum strategies are tailored to the needs and abilities of each student, many who have Cerebral Palsy, Spina Bifida and other Motor Challenges.
The Conductors are committed to teaching students to reach beyond what is expected. They include music and singing into a structured routine making it a fun and positive experience, so they can learn the necessary skills needed to live a more independent, confident and fulfilling life.
You can only imagine our excitement when they had Hailey up on a walker (with assistance of course) after only being there 3 days! We wholeheartedly agree with the program and want to see Hailey attending on a more regular basis. I’m not sure if that means moving to Michigan, or making the trip there more frequent. It is not even out of the question to open up a Center here in Massachusetts. Either way I have to get more aggressive in my fundraising efforts. Unfortunately Conductive Education is not covered by insurance.
Friendships are different now than they used to be, quality instead of quantity. The entire community welcomed us with open arms. The parents, the staff, and the program director were all helpful and inspirational. We felt a complete sense of belonging and unity. Families who understand, people who have never met us before opened their home and their hearts to us. It is the bond we share as families of children with special needs. Parents who have walked the road before us paved the way. The same families who have learned not to waste their precious time listening to rude comments, awkward stares and low expectations from Doctors.
To all of the Parents and Educators at The Conductive Learning Center in Michigan. I have just one thing to say. BRAVO BRAVISSIMO!

The House That Love Built

“The House that Love Built”

The Ronald McDonald House of Western Michigan
Their mission is to provide a “home away from home” for families of children and youth
seeking medical treatment.

As I write this post I am sitting on the front porch of The Ronald McDonald House. It’s a beautiful warm summer night in Michigan, I am feeling extremely relaxed and blessed that I am able to spend the last week of Hailey’s Conductive Education session with her. Thank you to everyone who helped to make this trip a reality. We are very proud of Hailey for all of the hard work that she is doing, and the progress she is making.

This is the house where families meet
to continue their lives, to eat and sleep.
to find their strengths and dry their tears,
to look forward with hope to better years.

Bricks and mortar seldom reflect the true nature of a house. For that transforms a house and makes it a true home, it is not the structure itself, but the love and resilience of the family who finds comfort within. The staff and volunteers here are some of the kindest people I have ever met. Their compassion is genuine and they are happy to help in any way they can. Donated goods, services and volunteer assistance help keep expenses down. The house is extremely organized. It sits on 5 beautiful acres with a walking path, picnic tables, children’s playhouses. It has 17 bedrooms, a kitchen that has four kitchenettes, it has a recreation room, laundry room, dining room indoor play room and great room. I’m sure I have missed a few things. While we were there the house had many different donations of food. The Olive Garden brought food in one night, Starbucks contributes regularly as well as random outside contributions. They offer a shuttle service that can take you to Drs. appointments, to the Conductive Learning Center etc. One of my favorite things is when they bring in therapy dogs!
Occasionally we have thought about a therapy dog for Hailey, but only time will tell if she will benefit from one. In the mean time we can still appreciate and enjoy them. When you stay at the RMDH you get free passes to some of the local Museums, fitness centers and even a zoo.
The suggested contribution is $25 dollars a night , but no one in need is ever turned away because of an inability to pay. If you are considering sending your child to the Conductive Learning Center or if you have to travel a long distance to take care of your child’s illness, I would highly recommend staying at a Ronald McDonald House, currently there are 297 houses in 30 Countries and Regions.

Baby sign language

I found this resource through Kidz, a great blog written by many talented woman (including myself) I am honored to be part of the kidz krew. Thank you Tara for sharing.
babysignlanguage Now, don't let the title fool you. Though this is helpful for many babies even babies who do not have special needs, it is a place for any person who would like to learn some basic sign language. So many people can benefit from learning sign language, just to list a few, sign language not only benefits individuals who are deaf or hard of hearing, but also those who are non verbal. This could mean people with Autism, people with Cerebral Palsy, sometimes after having a stroke, people find themselves with speech impairments, teachers can benefit from learning sign language as well. The list is really endless. You never really know when you are going to need sign language.

The website contains these free digital resources, among others:

Free printable Flash cards
Free printable wall chart
Free Tutorials
Free video dictionary
Facebook Community
Learning just a few signs can cut down on the level of frustration you may have when communication is compromised. You don't have to be an expert in sign language to benefit from using it.
So hurry on over and start learning baby sign language today! Why not equip your child with many different ways of communicating! Leave a comment about who you think may benefit from sign language. Thank you for reading!

Hippotherapy

I am just so excited I think I am going to burst. This is going to be a great year for Hailey! Lots of alternative therapy happening for her. Things that we believe she will benefit from. I’ve spoken about Conductive Education in great lengths, through conductors, other moms, and shown videos. I think you all understand it better now. In addition to attending Conductive Education in May, Hailey will also be starting hippotherapy when we get back from Michigan. The first time I read about hippotherapy was a couple of years ago while vacationing in Florida. I read about a stable in Ocala that offered hippotherapy to children with Cerebral Palsy, the article explained how being on top of a horse could help build core strength. When we got home from vacation we immediately started looking into the centers in our state, Hailey was too young then, but we believe she is ready now. We recently learned that there is a center about 45 minutes away from us!!!!! Sunday we went to visit the center to get more get more familiar with hippotherapy and also to see how Hailey would react. I think the photos say it all...Hailey loved it. We placed her on top of a pony and she wasn’t scared at all (she’s a little daredevil anyway). In fact when I put her on the ground, she tried to crawl right under the fence into the horses stable. I think she is ready for sure.
This is what we learned about hippotherapy:

Hippotherapy is a physical, occupational and speech therapy treatment strategy that utilizes equine movement. The word “hippotherapy” literally means “treatment with the help of the horse” from the Greek word “hippos” meaning horse. Specially trained physical and occupational therapists use this treatment for individuals with movement dysfunction as part of an integrated treatment program to achieve functional outcomes.
In a controlled hippotherapy environment, the horse influences the rider rather than the rider controlling the horse. The rider is positioned on the horse and actively responds to his movement. The therapist directs the movement of the horse, analyzes the rider’s responses, and adjusts the treatment and horse’s movement accordingly. Specific riding skills are not taught (as in other therapeutic horseback riding programs), but rather a foundation is established to improve neurological function and sensory processing. This foundation can be generalized to a wide range of daily activities.
The unique nature of hippotherapy allows the rider to engage in activities on the horse that are enjoyable and challenging.
Why the horse?
A horse's walk and gait provides movement (or “sensory input”) that is variable, rhythmic, and repetitive. The resulting responses from the rider are similar to human movement patterns of the pelvis while walking. The therapist can observe and grade the degree of sensory input to the rider, and then utilize this movement in combination with other treatment strategies to achieve desired results. Riders respond enthusiastically to this enjoyable experience in a natural setting.
What are the benefits of hippotherapy?
Occupational and Physical Therapists use engaging horseback activities to treat children as young as 2 years of age and throughout their teenage years. This increasingly popular method helps clients meet their individual clinical goals including: improved gait, mobility, strength, and balance; sensory processing and modulation skills; & endurance and independence. Therapists also target communication and behavioral skills through these therapies.
Functional limitations that may be improved with hippotherapy:
• Gross motor skills such as sitting, standing, walking
• Speech and language abilities
• Behavioral and cognitive abilities
Who performs hippotherapy?
Therapists who perform hippotherapy are actually physical, occupational or speech therapists. Hippotherapy is the treatment strategy used by these skilled practitioners to achieve functional outcomes.
Does the therapist work alone with the rider?
Therapists performing hippotherapy normally work with a horse handler. This individual is charge of the handling of the horse during the treatment session. The handler has received extra training in handling horses specifically for hippotherapy.

American Sign Language

Sign language...hmmm...another way of communicating for many people, not only for people who are hearing impaired but for many children/people who are non verbal, some people who have autism use American Sign Language, others who have C.P. have found it helpful and so many others.
Hailey uses her Dynavox V at school to help her communicate and they are also teaching her a bit of sign language as well. Last year my husband and I decided to have someone come to the house once a week to teach us sign language so that we would be could keep up with Hailey. This year for Christmas we got our family an IPAD so that Hailey could use the proloquo2go app. Some people in the special needs world are referring to this app as “a miracle device.” I think it is important for us to have many different ways of communicating with Hailey if not with words.
Because we did not actually use the sign language steadily and regularly, I have already forgotten some of my signs. :( A couple of months ago my local library had the Program Director of the ASL Academy come in and teach some basic signs, I thought this would be a great opportunity for me to take a refresher course. I attended this workshop and struck up a conversation with The Director about the Academy. He told me a bit about his program and also offers a course on line. For so many families out there, finding the time to commit to a class seems nearly impossible. Taking the online class may be the answer for your family. I hope you find this helpful.

The American Sign Language Academy offers classes in American Sign Language in Pawtucket, RI, with over 90 students attending regularly. In addition, to accommodate those who would like to take classes but may be too far away or have scheduling conflicts, ASLA will be offering an on-line course starting in April.

The course utilizes 21st century technology with the benefit of teacher feedback. The idea is called the Blended Classroom. The cost for level 1 on-line is $125.00.

After registering for the course, students will be sent their course materials. They will go to the website and use are a password for the first of nine weekly lessons. They will see a video with detailed instruction. At the end of the lesson, students will need to set aside time to practice. After seven weeks, students will meet with the teacher (Manuel Martin) via webcam and do their first presentation. They will receive feedback from the teacher. In the ninth week, they will do their second presentation. After the teacher indicates the two presentations are successful, students will be mailed a certificate of completion and they will be eligible to go on to level 2.

Students will be able to access each lesson for the assigned week. If they miss a week, they will be allowed to go back to that lesson as a make up. Only one lesson may be repeated in this way during the course.

More than one student may use the course. However, each additional student will be charged $25.00 if they want to do their presentations for the teacher, receive feedback and receive a certificate at the end of the course.

In a few weeks, when the program is ready to be launched, information will be posted on the website. Contact us with any questions you may have.

Manuel Martin
ASL Academy
401 722 1022
http://www.aslacademy.org
http://www.facebook.com/pages/American-Sign-Language-Academy/219507895413

Core Strength

I just love to spend Sunday afternoons with Hailey, we are not usually rushed for any particular reason. No school, no work...no worries. We can read as many books as Hailey wants to read, she loves to put about 10 books at a time on my living room chair and then come and get me to read them to her. She never tires of reading the same books over and over again. We watched movies together Dora and Tinkerbell. Hailey had to show me how to put the movies in the blue ray player, Grammie doesn’t have a clue how to work it. Thank goodness Hailey did.

Hailey has been accepted and will be attending The Conductive Learning Center In Michigan in May. We are very excited about this!
Because Conductive Education promotes development of the whole person, including physical, social, cognitively and psychological aspects, this intervention is not viewed as a traditional therapy but rather a multi disciplinary approach to improving the quality of life for children and their families. Hopefully Hailey will learn to gain control of her movements, increase her core strength and increase her level of independence. It may also help with potty training. The children and families who attend C.E. are taught problem solving skills that will allow them to develop unconventional ways of accomplishing motor tasks. Today we worked on core strength and neck and head control by sitting independently at this table that we fashioned out of a $7.99 ikea table and a towel holder that was bought at home depot. Hailey seemed to like sitting this way, but when she got excited she would let go of the bar, so of course she could not be left unattended. And of course, she still amazes me everyday!

If you have adapted any furniture in your home to help with core strength...please do share!

A small dose of the " Medicine of Music"

After playing with balloons at a physical therapy session with my mom recently, I thought...what a great way to get Hailey to move her arms more, so this weekend I had a long overdue sleepover with Hailey. We had so much fun, we always do. I bought a couple of latex balloons at the iparty store and we started hitting them across the table. What a cheap, fun exercise, just listen to Hailey’s laughter in the second video, this does not seem like therapy at all and it is a great way to keep her moving.
If you listen carefully to the first video, you can hear a song playing in the back ground. It is a song I sent away for some time ago and was personalized for Hailey. It is from the songs of love foundation. This incredible foundation writes songs for children who face severe medical challenges. If you have a child who qualifies for this program, she will receive a cd in the mail within 4 weeks. Hailey absolutely loves this song, she loves that she hears her name in it over and over again. She cannot ask for it verbally, but in her ever so special way she asks for it every time she comes over. She smiles and gracefully extends her arm in the direction of my outdated cd player that sits on the kitchen counter. If for some reason we miss what she is pointing to, she will begin to sway and dance in her chair until I say “Oh, I know what you want” (insert Hailey’s smile here) you want to hear your song.
The mission of the Songs of Love Foundation is to bring healing music to chronically and terminally ill children across the country. The foundation is a national non profit organization. To date, Songs of Love has written more then 19,000 songs for children in more than 500 hospitals across the country and throughout the world. The pool of artists has grown to more then 350 songwriters, lyricists, instrumentalists and vocalists who have experienced the excitement of being able to give back with the talents they were given.

Music expresses that which cannot be said and on which it is impossible to be silent.
-Victor Hugo

A Valentines poem for my Sweet Tart "Just because"

You have my heart there is no doubt,
my fragile flower, I can’t live without.
my heart is yours, as well my soul
I love you more than you’ll ever know.

A little girl, with long brown hair
her smile it spreads from ear to ear.
her words unspoken, I don’t care
I know she loves me, i’m well aware.

Her future holds no certainty,
but then again who’s does
i’ll just take it day by day
and love her just because.

xoxo Copyright by Janet Harrold

Exceptional Family

A lot of you may recognize this beautiful family as Zak, Nathan and Renee Charlan from Exceptional Family T.V. “EFTV” Is my favorite online destination to visit for news and current resources and advice for children with special needs. Advice given from other parents of children who are living the “Exceptional” life. I credit this family for their humble approach and ability to expose their private lives to benefit others. I personally would like to say thank you for giving us a voice and a connection with each other, and for all that you have done to facilitate this “Exceptional” community.
If you would like a 16 X 20 oil painting of your child email me www.harrold.janet@gmail.com 100% of the proceeds go to Hailey's Conductive Education

A Conductors Point of View on Conductive Upbringing

My next guest blogger is Viktoria, she is a Conductor and now a step mom to beautiful India who has C.P. India is very fortunate to have someone with such expertise love and care for her, but if you ask Viktoria I am sure that she will tell you that she is the lucky one.

Thanks to Janet for this great opportunity to share. My name is Viktoria and I trained as a conductor-teacher 12 years ago. Since then, I traveled to and worked in several countries and worked with hundreds of disabled children and their families. I feel that each time at each place I’ve leant more than I’ve ever dreamed to be able to teach—not just about my profession, or disability, but about people. After ten years of traveling I settled in the USA with my fiancée, who—as life has it—has a daughter who has cerebral palsy. So it happened that I got to practice what I preach!
My fiancée’s daughter is 12, and she’s beautiful. Her name is India. She started going to conductive education camps when she was little, having to travel states and countries; now she goes to a regular school and is raised at home the conductive way. This is called conductive upbringing—something that I can’t describe without first explaining what it is NOT.

I apologize that I do have to complain here. It’s almost impossible to find useful information about conductive education on the internet (“conductive upbringing” is the correct translation of the original Hungarian term; “conductive pedagogy” is the pedagogy behind what is a way of parenting and a way of life). Almost everything that one finds after a Google search of “conductive education” is laden with capital errors and very confusing misinformation. Please don’t believe for a second, regardless of how many websites, parent or professional blogs, discussion forums etc. are trying to explain you that conductive education is a “therapy”, “alternative therapy”, “holistic method” or anything anywhere near these: conductive education has NOTHING to do with medicine, (neither “conventional” nor “alternative”), it has no place in medical journals, and no self-respecting medical professional should ever try to analyze pedagogy as if it was some kind of cure for an illness!

Doctors are incredibly useful. They might have saved your child’s life. Their opinion is relevant when it comes to their area of expertise: diagnosing and treating medical conditions. A lot of children with brain injuries have one or more of those underlying medical issues that do need medical attention and various interventions. However, their opinion about your parenting skills and pedagogy in general is not more relevant than anybody else’s as these are usually not their area of expertise. Pedagogy is a social science.

The confusion about conductive education has several reasons and it has been around since the beginning (conductive pedagogy has been around for several decades, but was hiding in Hungary behind the iron curtain until the 1980s). One of the reasons may be that the brain or spinal cord injury that causes the disability is usually acquired in circumstances that include accidents, hospitals, doctors; so one is likely to search for the solution there, and assume that if the injury is in the central nervous system, then the central nervous system has to be “doctored” in some way to eliminate the disability. The problem with this is that it is unfortunately not possible to do this. The injury to the brain or spinal cord is final and irreversible—any doctor knows this, even first-year medical students, and they are likely to tell you about this—hence the impression that “there’s nothing that can be done”. The doctor may even warn you of “certain elements” that may play on your despair, use your misfortune to sell you products and interventions that promise to reverse these injuries and that your longing for hope may dupe you into going for these (these are called “quack therapies”, and include stem cell therapy, hyperbaric oxygen therapy, magnetic therapy and many more). The doctor is right; regardless of what any of these charlatans claim, irreversible injuries remain irreversible.



The good news is that this doesn’t mean that nothing can be done. The way the disabled child is brought up will make all the difference between an inactive, helpless, dependent child and the active, motivated, independent one: that’s your power as a parent. The upbringing you provide, the opportunities you give your child to learn, to participate, to help themselves are all going to make the exact same impact as they would if your child didn’t have a disability. You wouldn’t question your impact in case of your typical child, why would you do that in case of your disabled child?

Conductive education schools, camps, or conductors who work directly with your family all serve the purpose of teaching you, the parent how to teach your child just about anything: how to motivate, encourage and help them to move, reach for toys, learn ways to change their place, to play, to communicate, to eat, to wash, etc.; how to organize your day so that you can fit everything in that you need to fit in; how to deal with funky behaviors and so on. It is a complete lifestyle “package” that is based entirely on common sense (which makes it incredibly difficult to describe!) Parents who are lead to believe by someone for some reason that conductive education is some sort of alternative movement therapy based on repetitive exercises superior/inferior to physical therapy loose out because even if they participate, they will not be able to raise their child in a conductive way therefore benefits, if any, will be marginal.

Pedagogy is a science but you don’t get the same quantitative proofs you get with Math. While studying to be a conductor, one learns a lot about the history of pedagogy, theories that came and went over the centuries and decades, theories that might have affected the birth of this very complex education system. However, conductive education is not based on any set scientific theories, it is just based on the aforementioned common sense and easily observable everyday facts: teaching might cause learning; more/better teaching might cause more/better learning; what you don’t even try, you may never learn; if you really want to learn something and you try, you may eventually learn it even if it seems against the odds at first; solving an impossible-to-solve complex task may become possible if it’s broken down to simple tasks and solved one after each; I could go on and on. There is almost nothing in conductive education that wouldn’t be observable in the way an average good family raises their kids or an average good teacher manages their classroom, but what is unusual about conductive education for the newcomer is that these everyday routines, parenting and teaching methods and techniques are applied to a broader population: disabled kids involved. This extreme simplicity of conductive education is what makes it so very difficult to understand for most. The results seem unbelievable because the disabled children do eventually end up learning and doing things they couldn’t do before, so everyone thinks there are some great and advanced scientific discoveries or “brain tissue recovery” and “brain rewiring” involved, while there is nothing like that. It’s the nature of people that they’re looking for explanations and it’s hard to accept that a major achievement of a disabled child is just a result of simple teaching and learning and not “healing”. That’s why we see a lot of descriptions of conductive education that try to make sense of it by providing these medical-style explanations of healing brains, but I can assure everyone that none of those are correct and every time you see one of those just click and go to the next page, because you’re wasting your precious time.

You should also quickly dismiss your source of information if you hear that you have to go to Hungary to get “real” conductive education, or that your child has to be in a group, or that you have to purchase the “original” wooden furniture that has been in use in conductive classrooms in Hungary. The truth is that you can learn to become a conductive parent in a very wide range of circumstances: if there’s a conductive education school near you where your child can attend full time that is really a lucky situation, but if there isn’t you can still try to attend one of the summer camps or you can try and get a conductor to come to your house a few times a year to teach your family. When this conductor got to know your family and your situation, you can even cut back on the costs of travel and whatnot and ask for their help using Skype and a webcam, at least some of the time.

If you become a conductive parent you can raise your child the conductive way and provide conductive upbringing at home. That’s the whole point. Being a conductive parent means that you are a conductive parent at all times, morning, noon and night, in the sitting room, kitchen, bathroom, car, park and at the grocery store, not only at specially allocated times and places. It means that you’re aware that your child’s disability is not an illness that’s awaiting the cure so that he can become a whole person, but that he’s already a whole person, and he’s a lifetime learner like everyone else. You as a conductive parent are also a lifetime learner like everyone else and you’re constantly learning and discovering ways to help your child’s learning.

There’s a lot more to say, but I’ll leave it here for now. I would like everyone to know that it’s worth to be a conductive parent. It initially seems more work and may be emotionally hard—there are times when you don’t help your child, you let them struggle and that may make you feel bad at first—but you can expect a payoff soon. Children can be very well aware of their achievements and that can make them feel really happy. That’s how India’s father hooked on: after he got a glimpse of what his supposedly helpless little girl could do and the huge smiles that even struggles and tears eventually ended up in, he never looked back. Not many people do.

Thank you to Viktoria for sharing with us a Conductors Perspective on C.E. you can read more about her and India at Conductive Upbringing

"I never knew"

I never expected to feel this way. I mean, of course I knew that I would love my grandchildren when the day came. After all, I am a very loving, nurturing person. I knew when the day came for me to have a grandchild that I would be blessed and that I would feel elated. But I never expected to feel a love as deep and as strong as I do for Hailey.
That being said, the day that Hailey was born, and with the level of complications that she had, emotions were overflowing, questions surpassed the highest mountains and uncertainty scared the hell out of me.
After awhile, and one heck of a roller coaster ride, reality and acceptance sets in and love and admiration grows even deeper than you ever thought possible. Hailey is an amazing little girl who has taught our whole family how to live a brand new life, a life that we never new existed. She brings us to new places and gives us a new perspective on what is most important, she has shown us how to be better people and more accepting and aware of others. Things that we never thought we had the time to do. Well, suddenly I have time, because for me the world seems to have come to a standstill and all of the things that we thought were so important are now insignificant. I have learned that we take things for granted everyday. I never realized that we are the fortunate ones just by being able to do everyday simple tasks like being able to walk, or talk, or by being able to feed ourselves. Well Hailey has opened my eyes to the fact that those things that we take for granted everyday are not simple tasks, they are not simple at all for many people. Who knew? I’ve heard about people having disabilities, but really I closed my eyes to it all. I had no idea how large of a community it really is. Now, that is not to say that people who cannot do these tasks cannot grow up to be great people, who can teach us so much about life, real life. On the contrary, people with disabilities are by far the strongest and most determined people that I know. Kind of funny yet contradictory that we perceive them as people who are weak. They will endure more in their lifetime than many of us will even begin to endure. (And we think we have it tough. See, it’s that perspective thing kicking in again) I challenge everyone reading this, to start the New Year off with a new perspective, a new outlook on life and new found respect for people who have a disability. I never knew that such a world existed, and I never knew that I could love someone so deeply as I love my granddaughter Hailey, but it is true, I do...who knew?


God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family. Author Unknown

LOVE IS...

LOVE IS...
When you care about someone and want the best for them even if it means putting your own needs last. Love is selfless. Love is when you see the best in a person even if others don’t care enough to take a good look. It is understanding their every word, even though they haven’t verbally said a thing. It is believing in them, when others think things are out of reach. It is appreciating them for who they are and not wanting them to be someone they are not.
These are just a few of the things that define love to me, what is the meaning of love to you?

"Giving the gift of Time, Quality time"

Why not give the gift of time this holiday season? At the risk of this title sounding a bit commercialized, note that I am not selling watches, or clocks. For most of my life I have always worked in retail, this time of year is always an extremely busy time for everyone. Even if you do not work in retail you are still extra busy either working long hours, or shopping for long hours, there is just too much to do and never enough time to spend with your family. Having a special needs child there are the endless therapies, school activities, Drs. appointments, more therapies, more Dr’s appointments and I just want to remind you to breathe, take a moment and realize what is most important in your life. Quality time spent with your child and with your family is priceless. This year I have decided that I would not work overtime, and that I would not spend countless hours in the mall, buying things that my family doesn’t like or doesn’t need. But instead I have compiled a wish list of things to do with my granddaughter and with my family, things that I always wish that I could do, but never make the time. Well, you know what, life is too short, this year I am just going to do it! The first thing that I would like to do is decorate a gingerbread house with Hailey. Now, I am definitely not your typical grandmother, one who stays at home and bakes delicious baked goods (I don’t have the domestic gene at all, I could however paint you an awesome painting) So, I guess I will have to buy one of those pre-fab gingerbread houses that you buy already made and decorate it ourselves. I will buy lots of candy, gumdrops for the walkway, m & m’s for the rooftop and candy canes for the doorway. Maybe we will invite a few of Hailey’s cousin’s and have a gingerbread house party! Another thing that would really put us in the Christmas spirit would be to watch a live Christmas musical at our local high school. There must be a local school or play house putting on their own rendition of The Nutcracker. I don’t think it is necessary for us to go to a big playhouse downtown and pay for a high ticketed performance, just in case Hailey experiences a bit of sensory overload. She enjoys music and she might enjoy seeing little ballerina’s twirling around dizzily on the stage. We definitely should go around the neighborhood and see the pretty lights. I know she will enjoy that this year. Maybe we could take a train to New York City for the day, I hear there is Disney’s “A Christmas Caroll” train ride in Central Station. This may be too ambitious of a wish list, but, if nothing else, I vow to spend quality time reading books to Hailey, and cherishing whatever time we can manage together, because she makes me smile, and I think that I make her smile too.

"Another Painting"

I’m sure these boys look familiar, this is the 3rd painting that Caryanne from About the Small Stuff commissioned me to do of her adorable twin boys. (Daniel and Benjamin) She was hoping to have it in time for her parents as a Christmas present and I wrote to her a told her that I probably wouldn’t get to complete it in time, with my mom being sick and it being holiday time at work etc. but to my surprise I actually pulled it off. Yeah! I absolutely loved painting her boys they are soo cute and Ben, like Hailey has Cerebral Palsy. If it isn’t obvious in the painting and I know alot of you look for this now. This time I placed the green c.p. awareness ribbon over their grandpa’s heart. If you would like a painting of your child, please don’t hesitate to email me at harrold.janet@gmail.com 100% of the money will go directly to Hailey for future therapies that are not covered by insurance. Such as Conductive Education, Hippotherapy etc.

“No act of kindness, no matter how small, is ever wasted.”

Being fairly new to the Special Needs Community it sometimes amazes me the amount of kindness that strangers show me when I least expect it. (It is also sometimes unbelievable the ignorance of strangers, but we’ll save that for another post) You may remember my friend June from alexandra glass art she is the artist that helped me make the C.P. awareness ribbons that I featured on a previous post. Well, this past weekend June attended Roslindale Open Studios. I decided that I would visit June and show my support for her work by paying her a visit. We also took the time to stroll around the neighborhood to see the other Artist who were displaying their wares in hopes of showing off their creativity and hopefully selling a few things. I’m so glad we did. We entered upon this one particular artist who makes handmade jewelry from the rocks that she finds on Cape Cod. Now, jewelry is not something that I wear often, I very seldom get the opportunity to go out and I don’t like to wear jewelry while I am working. But while peeking over June’s shoulder at the stone earrings I noticed an awareness ribbon that caught my eye. I picked them up to show June and the woman who made them asked me if I had a personal connection to the awareness ribbon, I said “yes, my granddaughter has C.P.” she leaned over to me and said “then take them for her”, I said “oh no, I couldn’t, she is only three years old and she doesn’t have her ears pierced but thank you” She insisted and said “then you wear them in her honor, then she can look at them all the time”. I was just so touched I asked her if I could give her a hug.
I write this post in hopes of paying it forward. Please be kind and show the love by following this link you never know, you just might find something that you have to have or you may even find a Christmas gift for someone that is special to you.

Music to my ears

Move over Liberace... this weekend Natalie, Tom and Hailey went up to New Hampshire to spend the weekend with Natalie’s aunt Christine. They had a great time at the petting zoo, apple picking, and trick or treating. Christine gave Hailey a gift and this one really struck a chord with me. She gave her her very own Baby Grand Piano! Growing up my family didn’t have much, but we did have music, most of my family were self taught musicians. My father played the guitar and the harmonica, my sister played the guitar and my brother played the drums. Coinsidently his son also plays the drums and my uncle went to the New England Conservatory of music. So it was no surprise when my son Tom(Hailey’s daddy) came home and said that he wanted to attend St. Paul’s (better known as The Boston Boy Choir) where he studied music and learned how to play the piano. He later went on to graduate college as a music major. “When Tom played it was intoxicating to me”, there was a sense of calm when he passionately ran his long slender finger’s up and down the keyboard. Due to her Cerebral Palsy I know that Hailey doesn’t have the dexterity in her fingers to play the piano like her dad, but it sure does my heart good to see her play and respond to music the way that she does. It makes me wonder how many of you have children in "Music Therapy" and if you do, how has it helped your child?