Wednesday, September 30, 2009


We have three boys – Ben (6), Logan (4) and Sean (1 ½). As probably any parents do, we are always amazed at how different they are from each other. But more than that, I have been shocked at the relationships they have formed with one another, but especially with Ben. The dynamics that I would expect between three typical boys are present in our house. Even though Ben is different, his brothers treat him the same.

My favorite story is about how Logan at the age of two made sure that Ben was not overlooked. I took Logan and Ben to the doctor. As many doctors do, if you are good, you receive a sticker. After both boys were examined, the doctor returned with one sticker for Logan. Logan asked the doctor where was Ben’s sticker. The doctor responded that Ben would eat his sticker. Logan told the doctor that we would put it on Ben’s back. Realizing he had been outwitted by a two year old, the doctor quickly went out and returned with a sticker for Ben.

I have been surprised by the way in which our three boys interact. Lately, Logan wants to do or have what Ben does or has. For instance, Ben made a cool art project, Logan copied it. Logan borrowed Ben’s cool sneakers from the closet and wore them around the house. He seemed to have borrowed them indefinitely, although Sean takes them every once in awhile.

Sean and Ben have a very special relationship. Sean feeds Ben food and drinks, kisses him regularly, and rubs Ben’s head. This is special because Sean has been know to hit everyone else. They both can sit in the double stroller without annoying each other, whereas Logan has a hard time sitting with either one of them. Not sure if Ben and Sean have an unspoken understanding – they are both biters.

Growing up with a sibling who has special needs carries a whole load of issues. Logan and Sean will have a sense of responsibility that most kids will not have at such an early age. On the other hand, Logan and Sean will hopefully be more compassionate caring individuals having experienced first-hand what it means to be open, inclusive and understanding. Helping them deal with the burden of all the emotional, physical and mental issues will be a part of our parenting job. They are so young now, but there will come a time where we will need to have discussions about how they feel about the situation, their role in the family and how we can help them cope.

I happened upon a Disney Movie called Soap Box Racer several years ago, and reminded myself that we need to revisit the movie when the kids are older. The movie is about a boy in a wheelchair who gets interested in racing “soap boxes.” It does an excellent job of portraying the family issues as they relate to having a child with special needs - relationship between siblings, financial issues, parents guilt, etc. True to any Disney Movie, it does have a happy ending.

Tuesday, September 29, 2009

Paradigm Shift

I grew up having a great birthday party each year – with friends, Carvel ice cream cake and games. It is important to me that our children have that experience as well. Each year, I’ve stressed over how we can make it great for Ben too. This year, I changed my perspective – it needed to be great for Ben – and that meant changing my view of birthday parties. Ben’s favorite place to eat is Fuel Pizza on Central Avenue – it has TVs anywhere you look, excellent pizza and a low-key atmosphere. I planned a 2 hour party with family and friends with pizza and Bob the Builder cupcakes. After one hour, several slices of pizza and two cupcakes, Ben was ready to leave. With the help of Grandma, he made his way to the exit. Party was over.

A paradigm shift is necessary. We, as parents, cannot apply the same standards that we use everyday in our own lives or from our childhood to plan, make decisions or even measure success. A whole new scale must be developed when you have a child with special needs – and that may even change as the child grows. In the instance of the birthday party, if my typical child was ready to leave after one hour, I would have been horrified. But I know with Ben, he had a good time, and the party was a success.

Thursday, September 24, 2009

Deviant Thoughts

I recently read the above title on another blog and thought, finally, someone is going to talk about the negative thoughts, the difficult feelings and the harsh realities that accompany the world of special needs. It turned out to be about someone ranting about their guilty pleasures. So here is my attempt to tackle the topic.

Ben’s behavior therapist is researching the process in which parents go through after learning they have a child with special needs for her doctoral dissertation. This may be ground breaking territory. I am unaware of a model that discusses how parents and families move through the emotions of this experience. If you think of the grief process with individuals moving through denial, anger and acceptance, this would be a similar model. What would be the steps for parents of a child with special needs? Denial, anger, withdrawal, acceptance and action/advocacy may be a part of it. Like many models, people could cycle through these levels more than once depending on the challenges they face and the support they receive. A model like this may help "normalize" the feelings and emotions that parents experience.

When we ask someone, “How are you doing?” we usually do not want to hear anything more than, “Fine.” We are in a culture where it is not usual to talk about problems that are personal, or if we do, it is at $125 an hour. And when it comes to talking about your negative emotions about having a child with special needs, it almost seems taboo.

I have had negative thoughts about having a special needs child – the usual, Why us? Am I being punished? The first summer after we found out that Ben was not “typical” I spent three days in bed. By day three, I did the old, ‘pick myself up by my bootstraps’ talk and decided to go on. I often move to the action phase to get myself going.

There have been more recent times where I cannot take the tantrums, noise, yelling, biting, hair-pulling, not-sleeping that comes with Ben. I would joke with my mom that I was sending Ben to a public residential facility if he didn’t shape up. This was my way of sharing that I was having a hard time.

I’ve had very sad thoughts about Ben being elderly. Who would care for him? Will these people know that he was loved by his parents and family? Will they know that he is a truly special person?

I know that I block out a lot of thoughts about the future. I do not allow myself to imagine too far ahead because I do not think I could handle that flood of emotion. It would be too much for me to take at one time.

My thoughts run the gamut – from frustration to sadness to pride to hopelessness – and sometimes they cycle in a very short period of time.

I carry these feelings around with me for lengths of time and then I finally share them with my husband, and then I am freed of them. When the emotions are trapped in my heart and brain, they swirl around becoming bigger, almost consuming me. When I speak the words out loud, they all become okay. And they even become manageable. Partly because when I share them with my husband, he can help me make sense of them. We always end with a prayer because that heals too.

Monday, September 21, 2009

Basic Instincts

When Ben turned three years old, his services were turned over to the school system. This transition meant a new school placement for Ben.

We have been incredibly lucky to have had caring case managers, teachers and therapists to work with Ben since he was a baby. I trusted their ideas and suggestions. At the big transition meeting to determine a new school for Ben, this group told me that there was one school Ben just had to attend. From what they had heard, it had the best teachers, therapists and reputation.

I visited this school. I left knowing that something was not right. I could not put a name to it, I could not tell someone why, when asked. I questioned this doubt, pushed it aside because everyone else knew better than me. They'd been doing this longer.

At first, we sent Ben there five days a week, and slowly, moved to two days a week for a couple of hours, then yanked him out quite abruptly. Three years later, I have perspective on this experience. At the time, it consumed me. Here’s what I can say now:

1. Do the research. Know your options.
The group at this transition meeting (including me) had tunnel vision for this one school. If we had all our information, we would have learned about a public school within walking distance of our house with a special class just for Ben with a wonderful and caring staff.

2. Visit and ask questions.
Many decisions have to be made for your children, special needs or not, and it is necessary to see for yourself what type of people will be caring for your children. Visiting is good, but asking questions is key. Ask to talk to other parents, ask about turnover rates, staffing, daily schedules, progress reports, etc.

Make a list of questions based on what is important to you. After this experience, when it came time for kindergarten, I met each teacher and principal with a typed list of questions. I visited the schools more than once. It took time, it was exhausting, but I learned a lot.

3. Trust your gut. Or those little legs and arms.
Everyday that I dropped Ben at this school, I wanted to cry. I knew he did not like it even though he could not talk. At his previous pre-school, his little legs and arms would move frantically when we got into the parking lot. That was how I knew he loved it there. His legs and arms did not move when we were at this new school.

4. Everyone is entitled to their own experience.
Am I angry with the therapists that led me to this school? Do I hold a grudge? Absolutely not! They were just passing along what they had heard from other people. There are many families who have had incredible experiences at this school who have gone on to volunteer there and raise money for the foundation. And their children probably did well there. But for our Ben, it was not a good fit.

After we ended Ben's studies at this one particular school, he was able to attend the public school around the corner. That school turned out to be a very special place, where the people who worked there were like angels ready to take Ben (and our family) under their wings.

Saturday, September 19, 2009

Trust the Process

It's been a long day with little sleep - can't blame the kids or the husband (he yelled at 1am for me to come to bed). I'm not good at comebacks but later I did think, I should have said, "Did Mrs. Einstein yell, 'Hey Al, come to bed, it's getting late and that stuff you're working on can wait.'"

I was up until 3am working on this blogsite. It has been in the works in my head for a long time. And for whatever reason, I had the courage to do it. Perhaps it was last night's book club discussion about "Loving Frank." Perhaps I was just ready.

So thank you to anyone out there who has read some of my postings. It is encouraging to hear your comments, ideas and thoughts. This is all new and I will use the words of my good friend Tracy, "Trust the process."

Independence Day

When my son was three, he saw a psychologist for a consultation. She told me about a family who had a 27 year old daughter with Down Syndrome, living at home. After a discussion with the family and some observation, she determined that the daughter could be doing about 30% more on her own. At the time, I took the story at face value – a therapist sharing a story about another family to try to break the ice, make me feel comfortable. After the session, the psychologist’s words kept coming back to me. Was the story a gentle way of saying that my son too, could be 30% more independent?

My mom shared a story with me several years ago about how my aunt asked about her parenting philosophy. My mother had responded that from the moment a child is born, it is a parent’s responsibility to help that child to succeed on their own. This comment has stuck with me.

More than a year ago, one of my son’s teachers asked me what I saw Ben doing in the future. I was dumbfounded - he was 4 ½ at the time and my plan for dinner was not even on my radar, let alone Ben’s future occupation. I quickly asked what her son, who has Down Syndrome, would be doing in the future. She answered, chicken farmer! Her parents own a farm where they have spent much time and her son could use his skills there. I knew Ben would never be a chicken farmer – because then I would never visit him. But that question also sits in the back of my head, what will Ben be?

The three anecdotes point toward independence. It also means letting go, doing less, observing rather than participating.

In my former life as a college counselor/administrator, we always talked about students being more independent. We chided the “helicopter parents” who hovered over their child’s every move.

As a parent of a special needs child, we hover more like a stealth fighter jet, making sure our child is protected, safe and secure.

But then those words come back to me: 30% more independent, succeed on their own and what will Ben do in the future? I don’t think any parent or caregiver would ever intentionally hold their child back by doing more for them, but with a child with special needs it is sometimes easier, faster and less messy. And then there’s the possibility that they cannot do it anyway. Hmmm…I need more time to process this.

Out on the Town

Going out with a child who has disabilities can be an emotionally, physically and mentally draining event. Where can I park? Do they have accessible restrooms? Will people stare at us? What if my child decides to make a lot of noise? How will I get my child around? Because of these questions and worries, I am not surprised that there are always so few children with special needs out at Discovery Place, Imaginon, Nature Museum and all the other places Charlotte has to offer. It can be a terrifying thing to do! The first few times I took Ben out in his walker, I fought tears the entire time – tears for being so proud of him and for being scared of the possibilities, good and bad.

In the 6 years that we have been taking Ben places, we have had one uncomfortable situation where a parent did not address their child’s rude comment. Other than that, we have many children come up and ask questions about Ben, his walker and why he is the way he is. I always make it a point to thank the child for asking the question because I think their interest is okay and I welcome it. Not that I think we all have to take on the job of de-mystifying people with special needs, but I do think it helps to be open, honest and courteous when asked genuine questions.

Friendly Encounters of the Special Kind

Making friends for any child can be scary and intimidating, but when it is successful, children can meet people who may be a part of their life for a long time. As we all know, friends are an important part of growing up. Children with special needs are no different. They need that experience as well. If your child is non-verbal and/or has physical challenges, it may be a task that involves creativity and planning. Here are a few ideas that may help you get started:

Get a class list
Ask the teacher if it is okay for them to share the names and contact information of the students in the classroom. This list of names gives you an opportunity to talk with your student about the children in the class. If it seems that your child has interest in a few, you may try contacting the parents.

One day while visiting my son’s classroom, I noticed another child putting his arm around my son and trying to sit next to him. I made contact with the mom and we had a “playdate” at our house – playing in our backyard sandbox.

A Safe Place to Meet
Once you speak with another child’s family, try finding a place that would meet the needs of both children.

Nevin Park has an all accessible playground – great for children using a wheelchair, walker or feet to get around. The playground features swings, ramps, climbing toys, stationery race cars and picnic tables. It is free and parking is easy.
6000 Statesville Road (704) 336-3586

ImaginOn is a library especially for children. It is a wonderful place for kids to explore. It is free and often has programming like story-time, music or Spanish classes. Parking is free for the first 90 minutes. Handicap parking, doors and elevators easily accessed.
300 East Seventh St. (704) 416-4600

Matthews 10 Movies is an inexpensive way to get to see a movie on the big screen – about $2 per ticket. They usually feature at least one G or PG movie on weekends during the early afternoon.
9508 Northeast Court, Matthews 1-800-FANDANGO Exp Code 1440#

These playdates should be short – 1-2 hours. Communication between both families needs to be clear so that everyone knows what is to be expected. I recommend that both children have a parent or family member present during the time together.

Last year, I found out that my son held hands each day with the boy in the wheelchair next to him on the bus. We invited this boy and his sister over for a movie and popcorn. When the family arrived, my son went wild – his excitement was unbelievable. The nervousness, trepidation and worry I had, disappeared immediately and I knew that the risk I took was well worth it.

Potty Story

Toilet Training – just those two words can instill fear into the strongest of people. I embarked on my first experience with my middle son and I waited until he was 3 ½ - he was more than ready. In fact it was so easy, he went right into underwear with no accidents. He was annoyed when I followed him around asking if he needed to go potty. Logan is a typical child.

Ben is six years old and the discussion of potty training has been going on for 3 years. He’s had his own potty for at least that long. Something clicked in my head the last weeks of summer and I knew it was time to get serious about toilet training. Here are some of the things I am learning along the way:

1. Are you ready? With a typical child, there is a toilet training method called the “Readiness Model.” This means that the child displays specific signs that mean they are ready to be potty trained, such as being uncomfortable in a dirty diaper, interest in the goings on in the bathroom, physically able to remove clothing and communicate their need to use the potty. With a special needs child, I do think that they need to be ready in a way that fits their abilities. And as a parent, you can assess that with the help of teachers and therapists.

What I have learned this past week is that you, the parent, need to be ready. Are you and other family members ready to take on the commitment (both emotional and physical) to train your child? There will be ups and downs, good days and bad days, ooops and yeahs – can you handle all of those? Consider the physical strain of lifting and moving your child and cleaning up any additional messes.

2. Set a strategy and stick with it (as much as you can). Talk with your child’s therapists and teachers and find out what they have seen work for toilet training methods. Look at what there is on the internet and in potty-training books. Then devise a system that will work for your particular situation. Think of how you will handle bedtime, school, weekends and evenings. How many accidents are you/school willing to live with at first and for how long? What will your child be responsible for – can he take his pants on and off, use the toilet paper, communicate his needs? When I started out with Ben, I expected perfection right away – meaning no accidents. When I talked with my friends, mother and Ben’s therapist, I came to realize that was not realistic for any child, typical or otherwise. So you may need to adjust your strategy as you get into the process.

3. Get a support system in place – When you have a meltdown, who will be there to pick you up? Who can you call when things do not seem to be going the way you planned it in your head? And even better, who will celebrate with you when there is success? Find out who will be willing to talk about the ins and outs of your day with potty training.

So we are six days into this, and we are still learning by trial and error. Ben does not cease to amaze me. He is now dry each morning he wakes up – not an expectation I set. When he hears me tell someone about his toilet training accomplishments, his face breaks into a huge smile. He is proud, and so am I!

*Ben is in his 7th week of potty training with minimal accidents.

Friday, September 18, 2009

Love at first sight

In 2003, my husband and I were blessed with Bennett Ryan, a beautiful red-headed boy with big brown eyes, tiny fingers and feet. So perfect, so sweet - we were so in love with him. So in love, it was not until many months later that we realized that Ben was not progressing - not moving his head or body, not making sounds.

Since we did make the realization that something was not completely right, we have been through a lot. It is my hope to share our story and possibly make it easier for others in similar situations. Everyone has a story to tell and I am a firm believer that sharing the good and bad of your own life is the best way to heal, best way to connect with others and the best way to find out that we are all alike in some way or another.

And I am selfish too. This is not just for others, this is for me too. I have wanted to be a writer for a long time. I wanted to be Carolyn Keene (author of the Nancy Drew series) first, then Erma Bombeck. By sharing our story, I also get to try out something that seems to sit somewhere inside of me.

Since I am starting this 6 years into Ben's life, I will skip around from practical stuff I do now, to some of the early years coping with it all. I posted the web address "Welcome to Holland" poem. My mom gave it to me when we first learned about Ben. It did a great job expressing how I was feeling. I read it again about a month ago and it has such a new meaning for me now. One line talks about how you may meet people you would have never met because of this experience - we have met some of the most wonderful and caring people through Ben. He seems to attract only the cream of the crop.

So here we go...