A Book Review: “Mommy, I Wish I Could Tell You What They Did To Me In School Today”

I don’t usually feel compelled to present book reviews as blog posts. However, after reading “Mommy, I Wish I Could Tell You What They Did To Me In School Today” by Richard Stripp Sr., I felt a responsibility to discuss it here. In it, the author, a special needs aide in the New Jersey public school system, offers a forthcoming and graphic depiction of some of the problems non-verbal special needs children have faced (and may continue to face) while attending school. It’s a book that evoked a range of emotions in me, from anger to deep sadness.

It’s arranged into individual chapters representing ten non-verbal special needs children with whom the author has worked. Each chapter includes a section that is presented as if the child were speaking. Mr. Stripp assumes the emotional and cognitive role of the child and presents what he believes these children would say if they could speak for themselves.

This powerful approach gives each child a new opportunity “to be heard” and for the child and his/her experience to be reframed with more compassionate eyes. It allows these children without a voice to be viewed with respect, and for their behavior to be reinterpreted as communicative* and intelligent rather than disruptive, meaningless, and even disgusting. In fact he states, “Often the behavior that teachers, administrators, aides or assistants find so disturbing is behavior that is a direct result of their actions and/or words”.

For instance, in one chapter a boy named “Adam” who has cerebral palsy hides his shoes every day before school. As irritating as this behavior may seem, it was the child’s way of communicating that he did not want to go to school and in his case he had good reasons. The author states that the child was often left in wet/soiled diapers and strapped to a chair most of the day (and that’s not the worst of it). Amazingly, this behavior stopped once his parents took him out of the school and sent him to one that provided appropriate care and educational opportunities.

The majority of the book is a series of horrifying accounts of mistreated and misunderstood special needs children. Only at the very end does the reader see statements about people besides Mr. Stripp who are committed to compassionately caring for and educating special needs children. Until reaching this section the reader has a picture of public special education in the US that is terrifying. Perhaps he does this on purpose, painting such a bleak picture so that the reader does not discount the importance and severity of this book’s message. However, I think the book’s message is so powerful that it would have come through even if he had included a broader viewpoint of special education and its problems in the initial chapters of the book.

We all need to remember and acknowledge that not all school programs, assistants, and people handle our children with ignorance and cause for concern. Nonetheless, some do, and the author is calling for awareness and change where negligence exists.

Mr. Stripp offers several potential solutions to ensure a better level of care and education for non-verbal special needs children. He proposes that school districts set standards of education and experience for special needs aides that allow them to support special needs children appropriately. For without adequate training, he believes both the staff and students are put at risk. He also offers some simple tips that school personnel can use to evaluate their interaction with a child. Finally, he suggests the widespread use of web cams (I have mixed feelings about this) and proposes that schools have an open door policy that allows parent advocate groups to stop by unannounced.

I believe our society can do much better to safeguard our special needs children and their educational opportunities. Any improvement has to begin with awareness and an acknowledgement that a problem exists. I commend the author for his courageous commitment to some of our most vulnerable children. He has taken steps to bring awareness to the profound problems that exist in special education and has brought them to the forefront in a way that cannot be ignored.

*The idea of behavior being communicative comes from a quote in the book on page 7.

Follow-up Articles & Resources:

Here is a link to an interview with the author on Autism Live.

Please see our “Books, Bloggers, & Other Media Resources” section for more resources related to cerebral palsy and special needs children.

Here is a link to the Mr. Stripp’s website where you may learn more about him and his efforts.

Shortly after posting this entry we came across an article that Wrightslaw posted about the use of cameras to protect special needs children from abuse.

Special Ed Ratings: A website designed to give parents in the US an opportunity to offer feedback on their local special education public school services.

 

 

The Beauty of Therapeutic Riding

I was eager to have Maya start therapeutic riding when we found out she had cerebral palsy. Even before her diagnosis, I had heard many wonderful stories about how therapeutic riding was helping children with various disabilities. When she was diagnosed, Maya was about a year old and I was disappointed that she was  too young too ride. When we relocated to South Carolina two years later I contacted Happy Hooves Therapeutic Riding Center. Recently, I saw the owner who recounted our first phone conversation and it made us both laugh. I had been so excited to hear that Maya met their age requirement that I had the enthusiasm of a teenager at a rock concert. This may sound strange, and perhaps it is, but I had a good gut feeling about the possibilities of what Maya could experience through riding. As a parent to a child with a physical disability I cherish the few opportunities my daughter has to participate in activities that offer her freedom from being in her wheelchair. Therapeutic riding was, and still is, the only activity I know that offers young children with moderate physical disabilities an opportunity for social, emotional, and physical growth in a natural setting.

Maya has been riding now for almost three years. We have consistently seen improvements in her posture and balance and there is something very beautiful about the relationship between the horse and rider. I find it magical to watch not only Maya, but also other children and young adults with disabilities come alive and look uncharacteristically free sitting upon a horse. In the picture I have chosen for this post, Maya had just started riding. What is incredible to me, our family and her therapists, is that in this picture it is not remotely apparent that Maya has difficulty sitting or maintaining her balance. Her experience on the horse is not always this effortless, but this image and the potential shown within it, will stay with me for years to come. A close friend of mine, whose daughter has a rare genetic syndrome, often shares with people that her child spoke her first word on a horse. She is still profoundly moved by this experience and credits her child’s love of riding with providing the momentum for this huge developmental shift.

I also appreciate the flexibility therapeutic riding offers. If Maya is tired and having difficulty staying upright, her instructor may have her ride backwards (shown below) which uses different muscles, or will have her lie over the top of the horse. Maya loves both alternatives and she still receives input from the horse’s gait when she is lying down. There is no fighting or forcing, or even worries about “using the time efficiently” because there are many opportunities for the child to learn on and off of the horse, including learning to care for it. Rarely is Maya able to participate freely in activities and feel independent but she experiences both with riding. It’s exciting to watch her and to feel her enthusiasm for this activity. We also enjoy the time Maya spends riding. The area surrounding the stables is beautiful and it helps me to clear my head. It gives all of us a refreshing break from the monotony of indoor therapy sessions and doctor visits. And it’s fun for her! 

Initially I had difficulty finding places that offer therapeutic riding. Now that we have been involved with riding for a few years, I have learned about PATH International, which may help you locate a therapeutic riding center near you. We have found therapeutic riding lessons to be very affordable in our area especially when compared with other non-covered treatments and interventions. However, for some families any additional and ongoing costs may be a hardship. In this case, you may wish to look into Hippotherapy which is conducted by a licensed therapy professional such as an occupational therapist, physical therapist, or speech therapist who may be able to bill through your health insurance.

In the “Treatment/Interventions” section of the website we offer more detailed information about the definition of Therapeutic Riding and how if differs from Hippotherapy. We also present an analysis of current research studies that investigate whether  therapeutic riding and hippotherapy are effective in treating symptoms associated with cerebral palsy. Click here to be redirected to this area of the “Treatment/Interventions” section of the website.

A smiling young girl in a pink adaptive seat and her father, with popcorn and drinks, in seats at a movie theater.

Finding Mainstream & Adaptive Seating Solutions

I want to give Maya every opportunity to feel like other children in a variety of settings. This past weekend we took her to the movies and tried out her new Special Tomato Booster Chair. She was so happy to be able to sit in the theatre seats like everyone else. Coincidentally, the next day a friend of mine, whose daughter uses a wheelchair, posted a picture on Facebook of her child sitting at the table with her family for the first time. Her child is three years old. She said to me, “I know it seems like such a small thing but she has never been tall enough to reach the table and eat with the rest of us”. I didn’t think it was a small milestone at all. In fact, I knew exactly how she felt.

From the time Maya was very young we have struggled to find the best ways to support her in a seated position. Because we are an active family and we enjoy being on the go, we are always searching for equipment and creative solutions that are versatile, easily transported, supportive, and maximally inclusive. Maya is now five years old and it was only this year that she has been able to fluidly get into sitting and interact with her environment with any degree of independence. Still, we rely heavily on adaptive equipment for sitting due to her continued balance challenges. We have used a variety of mainstream market products and adaptive seating options along the way. I have wondered how other parents tackle these sitting challenges and I hope that by providing insight into our journey and the list of products we have tried, we can help others get through similar issues. *There is a summary list at the end of this post with brief comments about seating products we have tried.

Maya showed signs of sitting independently within the first year but she lacked the stability to maintain it, and she could not get into a sitting position on her own. I remember a couple of physicians and therapists evaluating her early on and remarking how “she sits so well”. Their evaluations were shortsighted because they considered her sitting successful if she could hold the position for a few seconds. Unfortunately, even a subtle noise was enough for her to lose her balance and fall over. She was quite adept at performing for doctors and therapists for short assessments, but she couldn’t play meaningfully with toys or other children. Over the last few years, I have repeatedly said, “If only Maya could sit up by herself I could do so much more with her and she would be much more independent.” Instead, I have often struggled to support her in a sitting position while simultaneously trying to help her engage with her environment.

This discrepancy between her performance for her doctors and her lack of independent sitting at home has made for a confusing journey. Since we were told early on that her case of CP was mild (which turned out to be incorrect), we kept prolonging the use of mainstream items thinking she would soon be on her way to independent sitting and mobility. Instead, we have slowly been pulled into the world of adaptive equipment.

Until she was about three years old, Maya used mostly conventional baby/toddler items for sitting. We were able to find mainstream market toddler booster chairs and make small adaptations to them so that they worked for her. However, there came a time when the rolled up towels and tweaks stopped working. This was true even for some of our adaptive items. I have learned my lesson about trying to make ill-fitting mainstream items and adaptive equipment work. When a product’s foundation fundamentally does not provide appropriate support for Maya, attempts to improve it with more straps or additional accessories are fruitless.

Sometimes we use Maya’s wheelchair for sitting but it often prevents her from interacting at the same level as her peers and with adults. For some children, the wheelchair may be the best and only option because of the nature or presentation of his/her disability. Since Maya has good head and neck control (and some trunk control), I do whatever I can to offer her alternative seating opportunities. When she is at home she rarely uses her wheelchair since we want Maya to practice moving herself without equipment whenever she can. When she gets older this may change. For the time being, I feel it is important to vary her seating options whenever possible to include her as intimately as possible with the people around her.

Once we started accepting the realization that we needed multiple pieces of better fitting equipment, over time we learned that finding appropriate equipment for Maya was not easy. It requires patience, research, intuition, trial and error (it is helpful to borrow equipment from lending agencies or therapy groups), the assistance of experienced therapists and vendors, and sometimes a little serendipidy. As I have learned more about how Maya’s CP affects her body I have found that I have a sense of what equipment may work for her. I have often presented ideas and specific products to Maya’s therapists for their approval and input, and this team approach has been successful for us.

There are many variables to consider when determining what type of seating solutions will work for your child. Because CP presents in countless ways, not all equipment will fit every child. At the same time, we are often faced with having to pick from the same equipment bases but use different accessories to personalize it for our unique children. Consult with your child’s therapist to help you determine which areas your child needs additional support. Then make a list of what you feel is important for your child and yourself in using the equipment.

You may find it helpful to list all of the sitting activities your child participates in that you feel require additional support and perhaps consider the following questions:

What do you feel is most important for your child do be able to do during these activities?

How do your child’s therapists feel these goals could be achieved with equipment?

What do the therapists feel is important for your child to be able to do or practice during these activities?

Where will your child participate in these activities? How will this affect your needs (i.e. do you need something portable or lightweight)?

If your child is able to provide input, ask them what he/she wants or needs. You may be surprised by her answers.

Once you have identified a potential piece of equipment for your child, consider how often and for how long it will be used. Some items we have seen (or that have been presented to us) have seemed like a great idea but when applied to our situation we found it was wise to look for more practical and less expensive alternatives or solutions. For instance, a floor sitter with a tray may seem like a fantastic idea but perhaps your child doesn’t like to sit still and will spend her time fighting to get out of it. If the item you are considering is $50.00 you may be willing to take your chances without much thought, but if it is $500.o0 you will probably have some regrets if it doesn’t get used the way you had hoped. It may help to select multi-use items to address issues such as this where you know the equipment will definitely get used for one activity and then if it gets used in an alternate but much less frequent way, it will be a bonus rather than a regret.

Or, perhaps after considering an item you do conclude that your child needs it.  You may determine that your child may not need a particular piece of equipment for very long, but that it is essential for the time that she does need it. 

And my final suggestion…Do not buy it unless you are able to try it (or return it once you do try it)!

Ideally your child should be appropriately supported in sitting so she has free use of her hands and arms (rather than putting all of her energy into keeping herself upright). This can be difficult. Often we have found that equipment is either too restrictive or not supportive enough.  Some pieces of equipment can greatly limit a child’s interaction with her environment. For instance, I love how Maya is able to use her hands and arms in the Kaye Bolster Chair. I also appreciate that it has wheels and I can move it throughout the house. It has a large tray table that is great for crafts, painting, and eating. The downside is that the tray creates a large boundary around her that prevents her from moving about her environment or getting close to peers, and obviously using the same workspace. There are trade-offs with using any piece of equipment but you want to at least be aware of what you and/or your child may be giving up in using a particular product.

Our most recent search for a new product for Maya came about a few months ago when she outgrew her mainstream booster chair by First Years. It was our last hurrah for using a conventional seating option for eating. She had simply gotten too big to use it and I no longer had any luck finding a mainstream item to replace it. We have an island in our kitchen with bar stools and I was determined to find a way for Maya to sit there with our family since it is a fun and often used part of our home. The primary issue was finding something that was appropriately supportive and would attach to our bar chairs. Our list of goals in order of priority included good trunk support for effective and free use of hands and arms, ease of use, durability, washability, and lastly portability throughout the house.

After looking at the Special Tomato products online for a few years, I decided to finally give one a try for our kitchen. Their Soft-Touch Sitter appeared versatile. It could be used on multiple chairs, at home and potentially at school, and the website showed a kit that could be ordered to use the Sitter on the floor. The Special Tomato products are made with a material that is easy to clean, soft and cushiony. It has some give while being molded and this appears to be a great combination especially with Maya’s shifting muscle tone. I ordered the Sitter and, except for lacking a removable tray, the product has not disappointed.

We had such a good fit with the Sitter, I decided to order the new Special Tomato Booster Seat to use when we go to restaurants and for traveling. This was an area for which we currently did not have an alternative to using Maya’s wheelchair after she outgrew the Fisher Price Healthy Care Booster Seat. We were not sure if the Special Tomato Booster would be supportive enough. It turned out it wasn’t, and I went ahead and ordered their Soft-Touch Back Cushion Liner (The back and seat liner products can be used to increase support in strollers and wheelchairs). The Back Liner is presented on the website with a Seat Liner that is similar to the booster seat but with a lower profile. The combination of the Special Tomato Booster Seat and Back Cushion Liner work great and offer Maya the additional support she needs. All we need now is a bag to carry it together.

Before we used the Special Tomato products, we had tried a list of items that never worked as well. The Seat2Go by Drive Medical was the piece of equipment we used heavily outside of our home, at pre-school, and for travel for a couple of years. Conceptually it was ideal but it never independently provided the trunk support Maya needed, and it had a few other problems. It was a stepping-stone and one I was grateful to have. It gave us ideas about what we were looking for and what Maya needed in an adaptive seating product. We used to put towels on the sides of it and often readjusted her when she used it. You may find that it will work well for your child. In fact, Maya used it at school for the last couple of years inside of a Rifton chair like this one.

Even though it wasn’t perfect, I felt the Seat2Go had so much potential that I contacted the product developer with a list of potential improvements for it. These included increasing lateral adjustability, using a material that is easier to clean (it is a suede/velour type of material on much of the outside) and changing the bottom so that it doesn’t scratch the surface of what it is sitting upon. My biggest design issue with this product is that it is called the Seat2Go but it is not easily carried. When transporting it the straps hang all over the place, there is no handle or backpack straps for carrying it, and it could use its own storage bag.

I have wondered why we have struggled to find the right products for Maya. We often seem to fall in the middle of what manufacturers offer. Are her supportive needs different than most of the other children using equipment? Are the product developers’ surveys not yielding complete information about what special needs consumers and their families are looking for? Perhaps it is the difficulty associated with companies trying to maintain profits by trying to create universal products and in the case of CP, apply them to non-universal problems.

I would like to see manufacturers offer more intimate communication with special needs families and more specific customization options. One company called Prime Engineering (makers of the KidWalk Gait Trainer) offers customization beyond their standard list of accessories and encourages the consumer to contact them. I am also not sure why there are not more simple (and in turn less expensive) adaptations available for conventional products, or why the special needs market seems to often be out of touch with our family. Frequently it seems that the accessory or adaptation we need is not found among the list of product options. Although products have improved over time in terms of materials, convenience and portability, I still feel special needs manufacturers could do better. Perhaps because the person who founded Special Tomato has a grandchild with Down syndrome, he understands the needs and goals of children with disabilities and their families better than most. Fortunately, it looks like we have found a company whose products for sitting work well for Maya and address our concerns as well.

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Mainstream and Adaptive Seating Options

The following is a list of regular baby/toddler products and adaptive special needs products we have tried over the last five years. Some we have had more success with than others. When it came to finding some of the mainstream items I have looked for seats that had an abductor/pommel, three-point harness, and tray option. This combination typically offered the best support for Maya. Perhaps you will see something here that will help your child:

Special Tomato Soft-Touch Booster Seat-Portable, lightweight, easy to clean, good combination of material that gives and is molded for support, can be used in multiple settings and can be adjusted for use on different chairs.

Special Tomato Soft-Touch Back and Seat Liners-Portable, multi-use (in strollers, wheelchairs, on desk and table chairs), lightweight, easy to clean, easy to transport. We ordered our Convaid push wheelchair a couple of years ago. Our priorities were different at the time and ease of use, portability, and a mostly upright configuration were our highest priorities. It has never offered Maya the support she needs. I love how light it is and it is very convenient. We tried the Special Tomato Booster on the base and it appeared to resolve most of Maya’s issues except the Booster is a bit too high. I am going to order The Soft Touch Seat Liner for use with this wheelchair in hopes of resolving many of her support issues.

The following are pictures of Booster Seat and the Back Liner:

Special Tomato Soft-Touch Sitter-This is a countered seat that offers a five-point harness for support around the chest, pelvic area and waist (we don’t use the chest/shoulder straps). It has a built in abductor and head and lateral supports. Although it is tall, it is lightweight and can be used in different chairs at home and perhaps at school. I wish it had a removable tray. This is not the most convenient item to transport but it has lots of versatility. There is an option for a stable or mobile floor kit, it can be turned into a tilt-in-space chair, and it is offered in child through adult sizes. Why did we wait so long to try this?!

Seat2Go-We used this piece of equipment frequently outside of our home, at pre-school, and for travel for a couple of years. Conceptually it was ideal but it never independently provided the trunk support Maya needed, and it had a few other problems. It was a stepping-stone and one I was grateful to have. It gave us ideas about what we were looking for and what Maya needed in an adaptive seating product. We used to put towels on the sides of it and often readjusted her when she used it. You may find that it will work well for your child. In fact, Maya used it at school for the last couple of years inside of a Rifton chair like this one.  Even though it wasn’t perfect, I felt the Seat 2 Go had so much potential that I contacted the product developer with a list of potential improvements for it. These included increasing lateral adjustability, using a material that is easier to clean (it is a suede/velour type of material on much of the outside) and changing the bottom so that it doesn’t scratch the surface of what it is sitting upon. My biggest design issue with this product is that it is called the Seat 2 Go but it is not easily carried. When transporting it the straps hang all over the place, there is no handle or backpack straps for carrying it, and it could use its own storage bag. The pictures below have the pommel accessory which is an option, but does not come standard with the Seat2Go.

Kaye Bolster Chair-This has been a great option for Maya at home and at school but again it creates a large boundary around her. The company’s website states, “that it was designed for kids who needs a wide based of support in order to achieve good pelvic position, lower extremity position, and trunk alignment for stable sitting.” It comes in two sizes and has an option for moveable casters. Maya’s posture and positioning are better in this chair than any other chair we have tried. Guess who was the first person to use it with her? Her school teacher!!  You never know who might have a great idea.

Fisher Price Healthy Care Deluxe Booster-We relied upon this seat heavily at home when we were on the go, at restaurants, and at her grandparent’s house. It is inexpensive, lightweight, and has a carry strap. It is easy to clean, offers three height adjustments, attaches to different chairs, and has a three–point harness, built-in abductor, and removable tray.

 

My Little Seat-Updated 12/2014

First Years Learning Curve Reclining 4-Stage Feeding Chair-We started using this when Maya outgrew the Fisher Price Booster chair. It was great and inexpensive. It’s not portable like the Fisher Price Booster chair, but it acted as our primary eating chair at home for a while. It reclines, has a three-point harness, removable tray, built in abductor and offers two height adjustments. First Years makes an “on the go” chair that may work for your child. It looks like the old style Seat 2 Go. Here is the link to it.

Stokke Tripp Trapp Chair-This was a surprise option that we found at our friend’s house recently. This is the chair they use for their toddler (who does not have special needs). I thought there was no way it would be appropriate for Maya. Surprisingly it was and we were baffled by why it did work so well and better than the Seat 2 Go that we brought with us for her to use. We didn’t order it for our home because we wanted an adaptation that could be added to our existing chairs. It may be worth trying one out with your child. In fact, Special Tomato makes a chair that looks similar but I never thought it would be work for Maya until we tried the Stokke.

Fisher Price Infant to Toddler Rocker-We began using this in our living room when Maya was very young until she outgrew it. It was a wonderful option for her to use in front of the TV or as an alternative to lying on her back.

 

Chill Out ChairWe have never tried this chair. I heard about it from another parent on a CP forum. There are two styles a Rock’er and a Roll’er (which is on wheels), three sizes, many color choices, and both include an ottoman which can be used as a side table. The company’s website states that its V-shape design promotes support for the user instead of belts/restraints. They also say it is lightweight and easily transported. Since it is currently a unique offering on the special needs market I wanted to present it here as an option. It is expensive and likely not covered by insurance, but the few parents who had commented on having one (on the forum) or trying it out, said it was awesome. If you have this chair or know someone who does, please give us your feedback to help other families.  ***Update-We have received more than four responses about the Chill Out Chair all which have been rave reviews. I received a catalogue on 7.17.2012 which had a new item called the “Cozy Chair and Ottoman Set” by the children’s factory. It looks similar to the Chill Out Chair but is not exactly the same. It does not have an option for wheels or other accessories that the Chill Out Chair offers and it is limited to children age 2-6. It may work for your child though, and if it does, you will have saved a lot of money! 

S.W.A.S.H Brace-We have found this to be a great piece of supportive wearable equipment (orthosis) especially for independent sitting during circle time. It was prescribed by a team that included an orthopedic surgeon, physical therapist (both were in the same room making an assessment) and an orthotist. The problem is that it can be difficult to put on and take off (for trips to the bathroom) and Maya becomes irritated wearing it especially when we have used it with other pieces of adaptive equipment along with it. I still think it is a wonderful option. It was developed by the parent of a child with dystonic CP who had problems with leg scissoring. It holds the hips in a manner that may offer the child greater stability in sitting. Also, the child can move and sit independently and freely while wearing it. Here is a list of goals that were used in designing the SWASH brace (from their website):

1. Increase abduction and stretch hip adductors to improve hip alignment

2. Prevent excessive adduction during sitting, standing and walking

3. Optimize sitting and standing posture

4. Achieve the above goals with an automatic transition from neutral (walking, standing) to abduction (sitting)

Lady Bug Corner Chair-We used this at school when Maya was under three years old. I remember really liking it but I don’t recall a lot of the specifics of what worked for her. I know it was used at her therapeutic pre-school during speech therapy.

Platypus Activity Chair-This is a great product, and Maya’s grandparents have it for her to use, but we opted for the Kaye Bolster chair at home because her pelvis kept sliding forward in it. It has many options for use at home and school and has a removable tray and an option for wheels. The chair is by Snug Seat and I like this company because of the whimsy they have brought to adaptive equipment. They use appealing names, fun colors, and we have found several products for Maya (not for sitting) that have worked well for her.

The Wombat HighLow Positioning Chair– The Wombat Highlow Positioning Chair by Snug Seat, has a hydraulic lift/lower mechanism. This was the first characteristic of the chair that I was drawn to exploring because I saw it as a possibility for use in multiple places within our home. We tried this piece of equipment when Maya was about 2.5 years old and she was afraid of the hydraulic noise (she had a strong startle reflex at this age). It was also too heavy and expensive, and I found it intimidating to adjust. I like to try and purchase items we can use beyond our home and this one is not made for easy transport. If it were less expensive and if she had not been afraid of the noise, we may have ordered it. Since we didn’t know how long Maya would need something this supportive we considered other options.

More on the Wombat:

I wish all wheelchair users had the option to lower or raise his/her wheelchair to meet a variety of table heights. I have seen a mainstream market high chair that also has a hydraulic mechanism (like you see at the hair salon). It is by Boone.  Here is a link to it. I have seen it in person and thought it had a lot of possibility. IT was heavy, but not nearly as heavy as the Wombat. I would have purchased it if Maya were not so close to outgrowing it.

If there is a product designer reading this, how about merging some of the characteristics of the Wombat and Boone Highchair? Sometimes I wish the special needs product designers used mainstream products as a guide for new product designs. They are not always so far from what we need. The manufacturer of the Bumbo realized the market demand for their product within the special needs community and created a larger size.

Floor Sitters

I will be honest here and let you know that I am not a fan of floor sitters for very young children. They give kids little (if any) opportunity to bring objects to themselves, which in our case, Maya was able to do even though she could not sit up. I often preferred having myself or another adult support her in sitting for the brief moments when she did want to interact with her peers or play with a toy, so that she could practice independent moving. It may be a good solution for your child to participate in circle activities (at the library or at school) or for sitting for brief periods of time when interacting with other children or adults. Now that Maya is older, if she was still unable to sit during circle time, a properly fitting floor sitter would be a great way to include her independently with her peers. There is a broad spectrum of costs associated with floor sitters so choose wisely balancing cost, with need, and an appropriate fit.

**There has been a voluntary recall of the Bumbo seat (8/12). Since there have been ongoing concerns about the Bumbo’s safety, I feel it is appropriate to remove my review of the Bumbo and its special needs version the Childrite Therapy Chair. There have been no recalls on the Childrite Therapy Chair that I am currently aware of. 

Rifton Corner Floor Sitter-This is actually one of my favorite companies but this is not one of my favorite products for Maya. This sitter did not support her well and I still have memories of her looking like she was bound to a board rather than having more freedom to use her upper body. Despite the two buckles for the chest and waist (BTW-more buckles do not always mean better support), her pelvis kept sliding forward preventing good use of her hands and arms. It does offer a pommel and this may have helped. It also blocked her peripheral vision which bothered me, but as I have said before, there are trade-offs with all equipment. If you are looking for your child to have some independence while sitting, then this could be a good solution. I stopped using it when a child at daycare accidentally knocked Maya over while she was sitting in it. We did not see this happen, and the chair appears very sturdy, so I would not be dissuaded from using it based on this one comment. It is something to keep in mind though when considering how and when it may be used. Perhaps a mainstream daycare program with 2 year olds was not the place to use this product without a personal aid. She could have been knocked over whether she was sitting in the floor sitter or not. At the same time, I think I would have felt better if she was not strapped into a piece of equipment that prevented her from using her body in a natural way to protect herself (something that Maya is able to do well).

Special Tomato Soft-Touch Sitter w/Floor Sitter Kit-This item is discussed above (without the kit) and has a kit which allows it to be used on the floor. I love multi-purpose products because they save on room and cost by eliminating the need for another piece of equipment. If you have ever seen Tumbleforms at your child’s therapy center, this is a very similar product. In fact, I believe the founder of Special Tomato used to design Tumbleforms. I do prefer the angled positioning of these types of floor sitters to the more upright sitters for Maya. She typically appears more comfortable in them.

Update 1/12/2013

Cube Chair and Edutray-This is not technically a floor sitter but it sits low enough to the ground I thought this was the best place to discuss it. It was a recent find and one we discovered through serendipity when Maya mentioned sitting in a cube chair during a therapy camp. I inquired about it and Maya’s physical therapist showed one to me. We both looked at each other with great doubt. It didn’t look supportive or appropriate for her at all. It can be used on two sides which offer different heights above the ground. We were surprised when we tried it out with her and it wasn’t terrible at all. In fact it had potential. I made some modifications to the base to give her extra support. I was thrilled when I saw that there was an option for a tray! Maya loves it and recently someone suggested trying it for dressing. It has made helping Maya get dressed so much easier since I can sit on the floor and she is close enough to the floor for me to interact with her at her level and save some strain on my back.

 

To view and post user reviews about standers, wheelchairs, and wheelchair cushions, you may wish to visit www.usatechguide.org.

A smiling mother supporting her laughing daughter from behind as they stand in a room with colorful glowing shapes and pictures

“Mommy, Will I Walk When I Am Older?”

I knew it was going to happen, I just wasn’t expecting it to happen when it did. When Maya first spoke about wanting to walk she was three and a half years old. It felt so surreal that for a moment I was waiting for a director to yell, “Cut” so I could quickly run off of the stage. But I was the director and I couldn’t run. Despite successfully traversing many difficult challenges in the past, this exchange stole my breath. It still does a year and half later.

Parents of children with disabilities become adept at thinking on their feet to meet their children’s needs even amidst very challenging circumstances. There are practical puzzles for us to solve such as how to fit into a small bathroom stall with a wheelchair. Then there are social situations to navigate like explaining to one of my child’s peers why she still wears diapers in a way that hopefully leaves Maya’s dignity intact.  This, however, was very different. I suddenly found myself choking on my own empathy and grief and unable to quickly find the words I wanted to say to her.

In that fleeting moment many different thoughts and feelings moved through me:

*I was thrilled that my daughter was being so open with her feelings and had the courage to share them.

*I realized her bad mood had less to do with her being stubborn and more to do with her feelings about watching people walk while sitting in her wheelchair.

*I was caught off guard and nervous about responding to her in a helpful way.

*I was facing my own anxiety that I had pushed out of my mind about what kind of mobility she would or would not have in the future.

I was trying to process these issues at lightning speed so that I could respond with enough clarity to quickly take away her pain (and in turn some of my own). I wanted to fix Maya’s feelings about her mobility challenges by providing her with a “perfect” answer. I didn’t want to discourage her and yet I didn’t want to give her false hope that she would potentially feel angry about later. What I painfully faced in that moment was the realization that I didn’t have the power to fix any of it nor did I know the answer to her question.

Two days ago Maya asked the walking question again (and it has come up a few times in between). She is five now and she asked me as casually as if she were asking for more cereal. She was staring at me, analyzing my body language, and waiting for me to respond. Nothing gets by this little girl. What she lacks in physical ability, she makes up for in emotional intelligence and acute observation (one of the benefits of being less mobile than others and having an active mind). She is astute enough to detect a longer than normal pause when someone is answering a question she feels is important. I would get away with nothing.

So, what did I say the first time and what do I say now? I chose then and still choose to answer her honestly. I cannot do it any other way. If I attempt to hide something from her, I know she will call me out on it.

I tell her that I hope that she will walk but I don’t know if she will. Perhaps I should not propose even a remote expectation. Who knows what is right? I go on to tell her that we will support her as far as she can go in her abilities. This is the most honest yet compassionate statement I can offer her. I wish I could offer her more.

With time it has gotten a bit easier to navigate this terrain. I have more awareness about what she needs from me. Initially, I thought because she was so young she wouldn’t be thinking about all of this. However, after the first time she asked me about walking, I realized that she was more in tune with herself and her environment than I gave her credit for, or that I was prepared to face. Now I have developed some ideas about how to answer her and I am becoming more comfortable being in the awkwardness of these exchanges.

Despite these being difficult conversations they offer an immense opportunity for Maya’s emotional growth. We are able to help her understand how she can better cope with her limitations. We help her learn about where her power lies in this struggle; in doing whatever she possibly can for herself. Regardless of what mobility issues Maya may ultimately face, this is a vital piece for her to understand and accept in order for her to successfully participate in this world. At the same time it is during talks like this that I remember to openly acknowledge how hard all of this is for her because I know sometimes she needs to hear it.

We want to help Maya focus on celebrating the goals she has achieved, and will achieve regardless of where she lands. I understand now that in order think about her mobility issues in this way she needs to face her authentic feelings and move through them as they arise. By allowing her to do this we will support her as she navigates her way to a healthy place of acceptance about herself, her life, and her disability.

I know many more tough conversations are ahead. Blake and I may not always have the best answers or the “right” answers, and I certainly wish I could speed dial God sometimes. But as I go further on this journey I learn that our path is less about getting it right, erasing a problem, or filling the space between us with an arsenal of positive outlooks. It is more about being there with Maya and her feelings, asking her about them and having the strength to do it.

Blake and I will sometimes ask each other “How do you think we did?” We can’t be too hard on ourselves. This is tough stuff. This is life, life with our unique little girl, and we are learning as we go.

A black compass face with the silver needle pointing towards the word “Growth”.

Can Buddhist Principles Help Me Navigate Another Seizure?

As long as I perceive a forward momentum in Maya’s growth and development I feel accepting of what we face together as a family each day. This is what keeps me feeling grounded. I guess this is why my emotional dam eventually broke when Maya had a prolonged seizure the other day that required a stay in the hospital. I was basking in the light of progress and hope when CABOOM; the canon fired and I shot out of my current reality and ended up in a far different emotional space.

This seizure felt like a terrible setback replete with a list of unanswerable questions that I wanted the answers to. Why did it happen? Maybe it was that much discussed “super moon”?, Could we have prevented it? Why, What, Maybe..What if…?; an endless swirl of thoughts and questions in my head along with a choking feeling in my throat.

Whenever my feelings and thoughts overwhelm me I recall a class I took in college on Buddhist ethics. If I had to guess why my mind goes there I would say it is because I am trying to find a way to escape the chaos in my head and the sadness in my heart. A central tenant of Buddhism is the release from suffering.

There is a Buddhist concept that attachment is the root of all suffering. It is the idea that by attaching and relying emotionally on material objects, people, ideas, and circumstances to remain a certain way, we will suffer when they change to something less satisfying to us (this is my very watered down version). Therefore, we live through a roller coaster of emotions that shift and change because what surrounds us is constantly in motion.

According to Buddhism you must transcend the mind (the origin of attachment) in order to transcend suffering. So as a human being who often analyzes and tries to think my way out of pain, I have landed smack in the middle of disappointment and suffering.

I get Buddhism’s point and recognize my delusion, but talking about it is not the same as integrating the concept into my psyche. Even if I spent my life in a monastery, I don’t think I could meditate/pray myself into that space of emotional detachment accompanied by compassion that Buddhism speaks of. But, it is a lofty goal and one I look upon with awe: not in this lifetime though (Buddhist joke).

So then there is the reality that most of us live in where emotional health is linked in various measure to how things are going around us; our jobs, people’s opinions of us, the health and well-being of our family etc.

Ah, if only I were like those Buddhist monks. The closest approximation I have to their nirvana is the big “D” word: Denial. Denial is this lovely coping mechanism where I pretend that everything around me is fine, peachy, etc. when lurking within me it is anything but ok.

I go through the numb/denial phase for about five days after Maya has a seizure. It’s a pattern of mine. During an emergency I am your woman. I can think, plan, act, and even make a few jokes. But my family has been through this before and my husband and I are all too familiar with how my strength and coping skills succumb to a different phase; me dragging my physical body around behind a big bag of emotional presents waiting for me to open and process.

So here I am in this post denial space processing these emotions; feeling my way through the pain, disappointment and guilt that always seem to visit me after one of these intense experiences. By this point Maya is doing well and we are getting back to our routine, so I appear a bit strange to my family and close friends who are wondering what could possibly be wrong now that the seizure has passed and Maya is ok. I don’t feel like telling them that I have this quirky yet quite adaptive emotional process where my tears start flowing long after everyone else’s have stopped.

I don’t want to look at these feelings and define and redefine myself against Maya’s challenges and how I relate to them. I would rather take a deep breath, wave good-bye, and say, “check you later”. But alas, these feelings don’t go away so easily after something this big. The canon has shot me so far from my comfortable emotional home that I have no choice but to grab some compass of my own design and start putting the pieces together that will lead me to yet a new emotional vista. I have to. There is no other choice. I cannot stay here and I cannot go back.

Just like Maya must work so hard to make new neural connections that help her put together the incremental steps to accomplishing what comes so easily to others, so must her mother discover and piece together new ways of relating to and managing my feelings about her struggle.

We all have to find our unique way through our dark places. When I have no idea how to move ahead I find comfort in knowing that other parents and people have done it before me and through far more challenging circumstances than my own. This is my mantra right now, my compass. Keep going…keep going… all states of being are temporary; even this one. At least I can find comfort in applying the detachment concept this way, in knowing that this pain too shall pass.

 

 

A man in a blue collared shirt is smiling at a young boy who is wearing a striped top. He is seated on an examination table.

Filling in the Pieces: The Anat Baniel Method & Cerebral Palsy

Please note that the following information is based on early personal experience of the Anat Baniel Method and not based on formal research. This post appears as an entry from the original CP Daily Living blog and is written by a parent and from the vantage point of a parent–not a clinician. It is vital that parents and caregivers discuss complementary, alternative and experimental therapies with their clinical team with respect to goals, safety, evidence and investment–both financial and with respect to time. You may find our treatment checklist helpful in making decisions about whether to proceed with a particular intervention or modality.

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The subject of the Anat Baniel Method (ABM) came up this weekend while visiting some close friends. We were speaking about Maya and her progress, and some of the treatments and modalities that have been working for her. This, along with the recent publication of Anat Baniel’s new book Kids Beyond Limits, inspired me to discuss the work in this week’s post.

So what is ABM? I have had this question posed to me numerous times and I have also asked this repeatedly of practitioners as well. When we first started this work we never felt we were given a good answer. We were told what ABM was not. It is not like acupressure, massage, chiropractic care, or Reiki. Ok, so what is it? From all of the exposure Maya has had, the few lessons I have experienced, and Anat Baniel’s new book, I came up with my own explanation of the work.

ABM evolved from the work of Anat Baniel’s mentor, Moshe Feldenkrais. It is grounded in the principles of neuroplasticity. In the simplest terms, neuroplasticity is the science supporting the brain’s ability to change itself, grow, and form new neural connections. ABM is a non-medical movement modality based upon Anat Baniel’s “Nine Essentials”. Through her work over 30 years and with thousands of people from five days old to ninety years of age, she has found that these “Essentials” repeatedly provide the optimum environment for the brain to notice, accept and integrate new information. This in turn, allows the brain to create more efficient movement, and allows the individual to feel more in-tune with and comfortable in her body. These are precisely the issues I have seen Maya struggle with daily.

In CP the brain, not the muscles, is the problem. So the concept of getting the brain’s attention and providing an optimum environment for it to make new connections makes lots of sense to me. Improve the quality of information getting to the brain, and in turn you will improve the quality of movement and the person’s experience of the world (Move Into Life, p25).

Here’s how you might begin think about the child with CP. Imagine that you are planning a trip and you decide to use a paper map. The first thing you do is to locate yourself on the map. Right? When you travel by car and you are at a rest stop you typically see a “You are here” pushpin. This helps you get your bearings and determine where you are going by knowing what is around you, what lies ahead and behind, etc. Well, now imagine that you did not have a “You are here” pin and you did not know where you were.  Also, half of the map was missing. That would be pretty tough. Perhaps you could figure out part of the information you needed to get where you were going but you would have to improvise along the way.

Your child’s brain is like the incomplete map with the pin missing. Each child develops a mental image or map of his/her physical body by interacting with her environment and defining themselves in relationship to it. Because children with CP have fewer and more limited interactions with their environment and themselves, they are missing pieces of information to help them complete their map.

The following is my way of understanding meeting the child where they are in their understanding of their body. Let’s consider a child with CP whose legs are often scissored (crossed). For this child Anat Baniel may say that the child’s neutral position is scissoring, in contrast to the typical child whose legs would be uncrossed in a neutral position.

That missing information—about what is a neutral position for the legs— may be a problem for the child with CP. First, because the child’s brain probably does not know that the legs are crossed and what this means, the child cannot learn to uncross her legs (the child does not know where she can go because she does not know where she is). The second problem is that the brain is actively sending signals for the child to cross her legs, even though it is dysfunctional for any organized or comfortable movement. This means that the child is not in control of the movement.

When presented with scissoring of the legs the focus may be on stretching or pulling apart the leg muscles (manually and/or with equipment) to uncross the child’s legs. This is contrary to the way an ABM practitioner would approach the child. He would look at the child and ask himself, “What is the brain doing right now?” and try to meet the child in the moment (an important element of ABM). The ABM practitioner would try to bring awareness to the child that she has two legs that can move independently from one another as well as together. Starting from the child’s perspective is completely different from starting from the idea of “This is where I am taking you”. If you start from considering what the muscles are doing, the child’s brain may not have enough information to get from crossing to uncrossing.

How does an ABM practitioner make sure the child gets the information she needs? Basically, (very basically) the practitioner gently moves the child in ways that offer hints or clues about body movements that the child may not be aware of presently. The practitioner might ask the child to do more intense scissoring and then less so that the child’s brain can identify degrees of scissoring (more and less and none). Communicating with the brain about what it is doing in the present moment, along with offering clues about new ways the child may move with ease, allows the brain to create the pathways that hold the intermediary steps. Lots of these steps, gradually assembled by the child herself, lead to new and more efficient movements.

When this is done something wonderful seems to happen. The brain, and hence the child, becomes aware of new possibilities. Now there is a point of reference or a “You are here” pin to let the child know not only where they are starting on the map, but also where they may wish to go from here. I am not a neurologist and I don’t study brain plasticity, but I have my child transformed through the application of these principles. As the child becomes internally more organized, their world does also because they see, feel and relate to it differently.

Why is stretching or forcing the legs apart a more difficult movement? I think it is because the focus is on the what the muscles are doing rather than what the brain is understanding. Perhaps trying to move the legs apart when they are wanting to come together adds additional muddled signals to the brain about what to do. The brain is already signaling for the scissoring pattern to continue. When someone tries to force the child’s limbs apart it adds an additional signal on top of it. This is akin to having someone pull your arms in two directions at once. You end up going nowhere and you feel a lot of pain in the process. The child cannot feel new possibilities of movement because the brain is already putting out a stronger signal. It’s like trying to stop a train going full speed ahead and telling it to also go the other direction all at the same time.

One of the ways an ABM practitioner will get the brain’s attention is through very slow gentle movements. When you approach movement very slowly, the brain notices and processes information it was not aware of before. If you are in your car speeding at 75 miles an hour and you suddenly decide to go 20 mph many things will look and feel different and be interpreted differently.

When an ABM practitioner guides the child’s movements, he allows the child to lead by exploring alternate movements that come with ease rather than force. Without pain and repetitive signaling to scissor, a brief window emerges that allows the brain to sense and perceive new information.

I will give one more example of ABM and how its approach can get to the root of a child’s interference. Maya was having several months of regular lessons and intensives (lessons two times a day for several days). It was becoming clear that she was stuck. We did not know why and we did not think more of the same lessons were the answer. Something was not connecting for her but we did not know what exactly was wrong.

We then had the good fortune of having Maya meet with Anat Baniel. In five minutes she determined that Maya did not know her belly from her back. Everyone in the room stared at Ms. Baniel like she was out of her mind. I thought to myself “What do you mean she doesn’t know her belly from her back? She can point mine out and yours!” Anat Baniel showed all of us that indeed what she was saying was true. We were astounded. Maya had no idea where her back was on her own body and in relationship to her belly. She had not had enough clear opportunities for her brain to differentiate parts of her body and accurately map them. This has nothing to do with intelligence, but rather opportunity. Since Maya is articulate it was not easy to pick up on this problem because she would talk about bellies and backs. She omitted her own. Maya was moving around the world with a “phantom torso”. How could she even begin to understand crawling if she didn’t have these key pieces? The truth was she couldn’t and it was not her fault.

We worked on helping her learn about her belly and back and having her feel each part independently in different ways so that this part of her map could begin to be filled in. Once we built this foundation we began to see progress again. Maya was picking up key pieces to help her understand where she was in space. The child (and all people) needs to know and feel where she is in space, in order to know the possibilities of where she can go.

I have seen ABM create the possibility for my child to experience within herself new potentials for her own body and how she thinks about herself and relates to other people. I have heard my daughter say during a lesson, “Wow look at this” when realizing something new about how her body works. The first time Maya rolled over, opened her left hand with ease, and got onto her knees were all during ABM lessons. We have shed tears watching the beauty with which she moves, the joy she feels while doing it, and the confidence she exudes in discovering her own hidden potential. To observe these transformations is astounding. Our feelings about this work come from a genuine feeling of gratitude that this work exists and has helped our child acquire new and lasting skills.

There have been times when we thought maybe we needed to stop (and did) because results were not forthcoming as quickly as we or our practitioners expected, or because the pace of the lessons seemed too intense for Maya. We thought the lessons, along with traveling to them, may be lowering Maya’s seizure threshold*. At those points we have stepped back and reevaluated what we needed to do or not do. (See the “Advocating for your child” section of the website for a longer discussion of how important it is for parents to take control of their child’s treatment).

ABM has worked for us over time: it is the trunk upon which we structure Maya’s other interventions and conventional therapies. We are grateful for the opportunity to have Maya experience its benefits. There are not a lot of practitioners however, and ABM lessons are typically not covered by insurance. This is why it’s very important to determine your goals, your budget and establish a timeline for trialing this modality and any other experimental or alternative approach you come across. In our experience ABM did not offer a “cure”, but in the early years it certainly offered hope for improved function and new possibilities for our child.

Update May 26, 2013: As we continue to observe Maya’s development, we are finding that she needs ongoing maintenance and consistent reminders about how to retain the new information she is learning. The brain has a tendency to revert back to old patterns of movement, so the challenge is determining how many lessons will allow Maya or any other child to move beyond a particular movement tendency. We have been fortunate to experiment with how this works for her since my mother-in-law became an ABM practitioner. She doesn’t live near us, but when we visit one another she is able to work with Maya. It’s been a process to discover how to  support and “protect” the benefits of her lessons, while also considering how sustainable this is for her and for us. Can her body handle it? Can our wallet? Making these decisions can be tough especially since lessons often enable Maya to move in ways we have never seen. However, no one knows how long a child will require them. A few years? 10 years? Her entire life?

One of my suggestions to Anat Baniel’s staff has been to develop a shorter and less expensive parent training program for parents to learn how to work with their children at home. This would empower families to provide ongoing support to their child rather than waiting for the money and time to coordinate the next lesson or next series of lessons. There are many children who are able to generate momentum for  building skills in between lessons, but for Maya, we have seen less of this in the area of gross motor development, her greatest challenge. At the very least I want to help her solidify the ways of moving that she is learning during lessons so that these possibilities become her new reality.

* Note: Although we have observed the combination of ABM lessons and travel seem to lower Maya’s seizure threshold, this does not mean that ABM causes seizures (or that we are saying this) or that your child will have this response. Every child is different and seizures can often be random. In our case, Maya’s seizures are infrequent and it has been a bit easier to identify some potential triggers. Nevertheless we still have several variables to tease apart but we feel our experience is worth noting and keeping in mind if your child has a seizure disorder. We always keep a log of Maya’s seizures and I think it is important to do this so that if some patterns emerge around activities, food, travel, illness etc., you can discuss them with your child’s neurologist. When I spoke with Anat Baniel via e-mail about our concerns and observations she said she has never known of a child she has worked with whose seizure disorder appeared better or worse from having lessons.

Visit to the CP Daily Living homepage

 

A young girl with wavy brown hair and wearing a white vest is laughing as she leans back in her white chair near the window.

Be as Persistent as the Sun

Welcome to our site! I was ready to launch this project a year ago. My intention was to create a website for parents and caregivers of children with cerebral palsy. Each time I got the motivation and inspiration to pick it back up, “Maya” (as we shall call her throughout the site) would have a seizure that required a hospital visit. At that point, the last thing I wanted to do was think more about her condition. I also felt vulnerable in sharing myself so openly with other people. I am a very outgoing and outspoken person but I am also very private. 

As we have continued on this journey as a family I have discovered the importance of using my voice to help my child and I believe I have done this successfully and positively in a variety of forums, circumstances and relationships. At the very least perhaps you will find value and camaraderie by me sharing the discoveries I have already made while stepping out of my comfort zone. Cerebral palsy presents in uncountable ways and the journey is always unique, but there are commonalities and struggles we all may relate to in tangential or sometimes even in profound ways.

So many people have said to me, “I am sure you have read, or heard, or seen the movie about…” and often they do not even hear me say “no” I have not. I have the type of personality where I make it my business to know whatever I can to help my daughter but I have my own way of doing it and I like it to be quick and thorough. There is so much information out there I could not possibly attempt to familiarize myself with all of it. 

After our daughter was born I would periodically review the list of milestones provided by the pediatrician and would avoid torturing my psyche by not reading entire books written about milestones. My approach has always been to surround myself with the best doctors, therapists, and professionals I could for my daughter, and with whom I could have a good relationship and gather relevant and accurate information. I aim to collect the most important information I need to protect and care for my daughter and I seek out details later when I feel it is necessary and appropriate. However, I have continued to come up empty-handed when searching for a website on cerebral palsy that I felt addressed the heart of what concerned me. With this in mind as well as the limited time people reading this may have, I intend to create a space with a couple of ways of accessing information. I offer parents and caregivers eager to know the facts, and those who are overwhelmed, with a central location to access pertinent information that you may search by subject, as well as our personal experience and how it relates to these topics.

My greatest healing and relief has been through the often brief, yet genuine moments of connection I have had with other special needs parents. I am constantly amazed by the strength, humility, love, and pieces of invaluable information I have learned from parents. There have been times where it was knowing that someone else had successfully made it through to the other side of a challenge I was facing, that offered me the hope I needed.

It is my personal desire to offer you a hand through cyberspace, to know that you really aren’t alone, that someone does understand or can relate to your pain, your joy, and your occasional feelings of discouragement. This can sometimes feel like an isolating journey and I hope to make it less so.

I am not here to say I have all of the answers or that my life is more or less difficult than someone else’s. Some days I feel less than successful in handling the challenges facing me and I have been fortunate to have a wonderful network of support and love around me. It is because of this love and support that I feel the obligation to take on this endeavor and share whatever I can with you in hopes it offers you some healing. Whether it is quick access to information, resources, or a connection to my family, I hope you will find something here that eases your travels on your unique journey.

From our family to yours!

Michele

A smiling woman stands next to a smiling young boy, who is seated in a wheelchair that is being loaded onto a white bus.

National Mobility Awareness Month

READ HERE TO FIND OUT HOW YOU MAY BE ABLE TO WIN A WHEELCHAIR ACCESSIBLE VEHICLE!

National Mobility Awareness Month will be celebrated throughout the month of May. The purpose is to educate the public that people with disabilities constitute the 2nd largest minority group in the United States. Over 18 million people in the U.S. and Canada have mobility issues.

The link to the website below is where you will find stories about people with disabilities who are dealing with and overcoming their mobility challenges. They are also asking people to submit their stories to be showcased by national and local media over the upcoming months. Favorite stories will be voted on by your friends, family and peers, and the winners will be awarded a new customized wheelchair accessible vehicle.

http://www.nmeda.com/mobility-awareness-month/local-hero-contest

A laughing young girl seated at a restaurant table, with a Christmas tree in the background, holding hands with Minnie Mouse.

Disney World Travel

Taking a vacation to Disney World was one of the most enjoyable and manageable trips we have had with Maya. The accessibility and accommodations that were made for her disability were positively fantastic. Thank you Disney for your exemplary focus on special needs.

My husband was not looking forward to this trip but we wanted to do it for our daughter. He does not like crowds, nor does he enjoy the “Disney experience”. Fortunately, Maya’s face in this picture says it all and melted away his irritation for most of the trip.

Maya loved the characters and being with her older cousin. She was comfortable. There was minimal stress associated with transitioning from getting onto and off of buses, rides, and into and out of restaurants. They even had designated areas within restaurants that were reserved for guests in wheelchairs and their families (in case other tables were filled). Wow! I could not believe how special they made us all feel. Disney recognizes the need for the entire family to have a break and enjoy each other. Whereas other trips are exhausting because of the constant thinking, planning, and lifting associated with negotiating inaccessible places, this trip was tiring for the right reasons; pure fun. I have told so many people that I felt that in many ways it was easier to navigate Disney World then it is our daily routine outside of our home because of their disability awareness.

There was a lot of planning that went into this trip. Believe me it was not completely easy breezy and there are many things to consider if you plan on going. Regardless, it is wonderful.

Please visit the travel section for specific tips on how to travel with your child. In addition to what you find there we used a book called, “Walt Disney World with Disabilities”. You will find a review of it in the “Books/Media” section of the website. It is a very detailed look at Disney World as it pertains to traveling with someone who is disabled. I highly recommend it. This book coupled with my own knowledge of what makes Maya comfortable when we travel, helped us make this a successful trip. I am so glad we did it, and that we included additional family members to enjoy it with us.

Now I know why so many people with disabilities choose to go to Disney World; it takes a lot of the typical thinking and strategizing out of the day and allows people to focus on having fun!

Five laughing young girls, together in a group, lie propped up on their hands while on the floor in a pre-school classroom.

Pre-School

Many of us look for childcare and preschool programs for a variety of reasons. Some parents require childcare in order to return to work, and/or to have a break from our care-giving responsibilities. In addition, many parents are also eager (as we were) for their child to have an opportunity to be with other children in an educational preschool setting. There are several different types of childcare options (in your home, in-home daycare, daycare centers, preschools) and you may have a preference for one over another. This is a very personal decision, but sometimes when you have a special needs child, you are faced with having fewer choices. Since our family faced many challenges and limited choices during the first few years, I am providing you with a place to start your search by compiling a list of childcare and preschool facilities who openly market themselves as welcoming our children. You will find this in the Education/Preschool Resources section of the site. If I could not find a facility in your state I provided a link to the state agency that conducts the licensure for daycare facilities, and/or the state office that provides childcare referrals.

We went through so many different hurdles trying to find the right people and places for our daughter but we have found some wonderful people and places along the way. It didn’t help that we moved during our daughter’s toddler years and had to start over finding new resources. I have learned that not all facilities and people who appeared to be “the best” were appropriate for my child. In fact, we experienced much resistance and passive discrimination at a University hospital’s facility that was NAEYC accredited and had all of the bells and whistles. I was so naive in the beginning. I thought if we were reasonable with our expectations and because we had a good-natured disposition, we would be received in the same manner. Weren’t these places and people bound by law to provide “reasonable accommodation”? Apparently, these laws do not always inspire people and places to do the right thing.

Throughout this time I have often felt like Julie Roberts in the movie Notting Hill when she says, “I am just a girl standing in front of a boy asking him to love her.” I do not think I ever felt so vulnerable in my life as I did going to door to door trying to find a pre-school willing to allow our daughter to participate in their program. While searching for a school I often would think of this movie and say to myself, “she is just a little girl, like any other, standing in front of you people, and asking you to love her”.

Perhaps, you will have a positive experience from the start and I hope you will be met with genuine compassion and open arms. If not, do not be disheartened. I have shed too many tears over people’s fear and stupidity when there are people and places out there willing and capable of caring for our children in a safe and stimulating environment. Sometimes the search is more labor intensive depending on how familiar people and places are with ADA guidelines. If you get discouraged contact your local Department of Social Services. There is a federal grant program funded by CCDF and within each state there should be a contact person and team (the name of the program receiving money from CCDF will vary by state) available to provide education and assistance to childcare facilities about including our children or  you may have other local agencies that provides education and resources about inclusion.

Many states are acknowledging the problems both facilities and families of special needs children are facing working together, and have started programs offering additional funds to facilities caring for a special needs child. Before you get angry about a bad experience, remember how little daycare workers typically earn, and the limited resources the facility may have access to (or feel they need) in order to appropriately accommodate your child. Many facilities also feel very vulnerable to lawsuits and we cannot really blame them. We live in a litigious society and when a special needs child or parent walks in the door, many people panic.

Hopefully you will find that the places you visit will make “reasonable accommodations” as they are supposed to according to law. If they do not, or if you do not have a good feeling about the facility, move on and find the one that will. Do not waste your energy taking a moral stand when other opportunities await your child. Would you really want your child in a program when they present themselves in such a negative way from the beginning? At the same time, if you feel strongly about voicing your concerns find someone who cares, who will listen, and a person or place that will do something positive with the information you are giving them. As special needs parents we need to conserve our energy whenever possible; so choose your battles and anger wisely.

Despite my desire to remain objective, there have been times where I just resigned myself to accepting that some people are just unpleasant, and even cruel and I did not hesitate to tell them. The one time we did formally document and report our experience of discrimination at a facility (where my child attended), nothing further was done to remedy the problems we knew existed. Instead, they fired the one staff member who was honest with us about how our child was being treated. So, be mindful of what your goals are if you do file a complaint, be diligent in finding the best forum for articulating your concerns and who they are reported to, and realize the potential need to remove your child from a facility (if he/she is already enrolled).

Sometimes you find help in the most unlikely places. Spread the word that you are looking for help. Talk to other parents (particularly those people who have children with special needs), social workers, doctors, or whomever you know that is a good source of information related to caring for your child. Your ABC representative or other advocacy organizations should have a list of centers and people they have already worked with to help establish inclusive programs. Perhaps there is a place that I have listed in your state that you find interesting but is far from where you live. Pick up the phone and call them. Ask them if they know of facilities or people in your area that could help you.

You may have to have some flexibility with your expectations, but never let that flexibility include a potential compromise of your child’s safety. We made compromises at various times. Our daughter has not always been in the least restrictive environment because the opportunities for something different were not supportive enough. We recently compromised on placing her in a preschool of a different religious affiliation than our own. The childcare and preschool searches have been lessons in patience, creativity, advocacy for my child, and offering up lots of prayers.

For more information and resources on education, pre-school, and childcare please see the Education/Preschool Resources section of the website.