Wednesday, December 11, 2013

"Mom, what's special needs?"

Since my boys were little, we have talked about their disabilities based on how much information they wanted to know. We never shied away from telling them, but we also never brought to attention their differences from "typical" kids. We always try to celebrate what they can do, even when they are seriously struggling with something that they can't. We wanted them to accept themselves apart from labels, feeling confident in their abilities, not their disabilities. We have also always explained it to them in matter of fact type ways with very little emotion behind it so that they didn't think that we were upset about it. Now that they are older, however, we are beginning to explain much more to them.

When the boys were 4, Andrew got his first wheelchair. This was nerve-wracking for me because it was a visual indicator to the general public that Andrew was different. Of course, Andrew immediately embraced the wheelchair as his mode of transportation and was ecstatic to use it to gain freedom and independence. I thought for sure that getting a wheelchair would be the start of the questions about why he couldn't walk and how he was different.... but I was wrong. Andrew saw the wheelchair as an extension of himself and he could do everything else that other kids could by using it or by crawling. When other people asked him why he was in a wheelchair, Andrew would respond, "That's how I get around! You walk, I use a wheelchair. That's how God made me." The usual response was, "Ok! Do you want to play with me?" or "Can I try it?" to which Andrew would usually say yes. Both Andrew and his peers took it at face value and didn't see any need to dig deeper.

When the boys got to Kindergarten, they first began hearing the term "special needs." They were in a special needs class (or exceptional children, as they call it in our state), on a special needs baseball team, and took special needs swimming lessons. They were mainstreamed for a good portion of their school day and saw that class as the "regular" class with the "regular" kids and their exceptional children class as the "special needs" class. Even though they began noticing a distinction, the direct questions still stayed away. They were happy with how their school day went and did not really understand that what they did was different from anyone else.

In first grade, Andrew began noticing differences. He started talking about wanting to take a bus to and from school. Andrew was in a regular class for almost the entire day at this point and realized that the majority of the kids in his class rode the bus. I explained to him that because of his wheelchair he would not be able to take the same bus as his friends. I explained that the bus that he rode would have to be the one with his friends from his "other" class because that was the bus that had a lift for his wheelchair. This was the first time that Andrew declared to me adamantly that he did NOT have special needs and did NOT need to ride a different bus.

The second year of 1st grade and into 2nd grade, Andrew was fully mainstreamed into a regular class. He began saying that he didn't want to play special needs sports (so we just called it "baseball," "soccer," "football," and "swimming"). As long as we didn't call something special needs, he was ok with participating. If he overheard someone describing him as having special needs, he would say, "No I don't, I DON'T have special needs." He still had friends from the special needs class and loved to be around them, but he hated the labels.  He had caught onto a negative connotation with the word, "special needs." He didn't see himself as different from anyone else...everyone was accepted as the same.

After his leg surgery in March of this year, Andrew really started to ask questions about his and his brother's disabilities. He knew that his legs didn't work like other kids and finally wanted to know why. I explained to him that he was born early and was sick (which he already knew) and that because he was born early that he had some bleeding in his brain that hurt it and that now his brain has a difficult time telling his legs what to do. I explained that he has Cerebral Palsy, but that only means that he has to work harder to do what he wants to do, not that he can't do something.

At first, he was very distraught about the answer. He was sad that he was born early and sad that his brain doesn't talk to his legs correctly. He was also frustrated that he had to have surgery when he just wanted to be in school like everyone else. Since we were in the midst of his initial recovery period, he was convinced that he was weaker than any other kids and that he was never going to get better. I comforted him and let him know that he was actually MUCH stronger than most kids and that most kids haven't had to go through as much as he has. I explained to him that he has to be stronger so that he can work harder to achieve what he wants. I also talked to him all about the things he is good at and how he never lets his wheelchair hold him back from trying anything. He left the conversation feeling more confident and with a far greater understanding of why he is the way he is.

Since those initial questions, there have been many many more questions. He is very scientific in nature and wants to know the details of how things work in his body. He is also very curious about Benjamin. He wants to know all about Autism and why Benjamin does the things that he does. I leave the answers as matter of fact and focus on the positives in their lives. It usually ends with Andrew feeling ok with what has been explained.

A few weeks ago as we were sitting at the dinner table, Andrew asks, "Mom, WHAT is special needs?" I paused and realized that I had never truly explained to him what that phrase meant. He had used it in context many times, so I had just assumed that he knew what it meant. I responded, "Special needs just means that a person needs a little more help than someone else to do certain things. Some people can't hear or see as well as others and need glasses or hearing aids. Some people can't talk well and need help from computers or sign language to communicate. Some people use wheelchairs or crutches to get around and sometimes need help with things like stairs or opening doors. Some people can't pay attention as well as others. That's all that special needs means." He says to me, "Well... I DO have special needs. But, I can hear well and see well. I can talk and write well. The only thing wheelchair. So, I am going to work really hard with my walking and work really hard with my crutches so that way I won't have special needs anymore and THEN I can ride the regular bus with all of my friends." I smiled at him and told him that I was proud of all that he has been doing and how hard he has been working. I also found it interesting that almost 3 years later, he was still upset that he wasn't allowed to ride the regular bus. It is honestly probably the very first encounter in his life with something that he truly wanted to do but couldn't find a way to do it, and that bothered him.

I hope that some day soon he will be able to ride the bus with his friends. I hope that our approach will allow him to be able to accept himself and love himself for who he is regardless of the labels put upon him by others. I hope that he will accomplish all that he wants to do in his life in spite of the nay-sayers and the expectations of the world around him. I also hope that we have made the correct decision to let the boys set the speed on the amount of information that they want about themselves. So far, I feel like it is the best approach for them.

Sunday, October 6, 2013

Children, Not Acronyms: Complicated Diagnoses

Child A- CP, OCD, SPD, ADHD.
Child B- CP, ASD, SPD, ADHD.

Every one of these acronyms represents one thing for me: exhaustion. Exhaustion from researching and researching interventions and medications to better my children's function. Exhaustion from driving to specialist after specialist to monitor their care. Mental exhaustion from dealing with the symptoms of what each one of these disorders represents while still juggling my normal parental responsibilities, praying often that I don't lose my temper because of something that my children cannot control.

Exhausted, overwhelmed, disheartened.

What these acronyms do not represent: Andrew and Benjamin. Yes, they describe symptoms that they exhibit. Yes, they answer the question, "What are their special needs." Yes, they label them... but they are NOT them.

I, like many people, struggle at times seeing beyond these diagnoses. I am like so much of the world in that I am conditioned that people with certain disorders act in certain ways.... that certain diagnoses have limitations that cannot be overcome. This often leads me to forget to see my boys for what they can do and what they have overcome. I need to remind myself (with some swift kicks from a truly special friend) to forget these little letters and see my boys for who they actually are.

It's this struggle of mine that allows me to understand the way that others see my children. "What are their special needs?" is a question I get on a regular basis. It doesn't bother me or offend me. Most people are curious and are not trying to be mean and I appreciate that these people are brave enough to talk to me instead of ignoring me and my family. These acronyms give them a frame of reference...something tangible for them to grab ahold of to better understand my children. However, I always, in my talking-incessantly style, attempt to show them how wonderful they truly are.

I decided a long time ago that if someone asks me about my boys that they will hear about my boys, NOT about these acronyms. "Yes, Benjamin has autism, but do you see how loving he is? He loves to be hugged and cuddled and tries really hard to make friends. It's difficult for him, but for the kids who take the time to get to know him, he can be a really good friend." "Yes, Andrew uses a wheelchair, but do you see how great he can climb into that bounce house and how he goes down those slides all on his own? He doesn't let him slow him down." Yes, they have these diagnoses, but these diagnoses are not them.

I have to remind myself to not get upset when yet another specialist hands me yet another diagnosis. We very recently were given Ben's autism diagnosis and Andrew's OCD diagnosis, but these diagnoses did not change my children. They have been exhibiting the symptoms of these disorders for a long time. They didn't change because of the diagnosis, so why should I really care about it? It gives us more information so that we can better address their symptoms and care... that is all that it does.

Having said that, let me introduce my sons:

Andrew-determined, brilliant, hilarious
Benjamin-sweet, loving, musically talented

They are not their diagnoses.

Sunday, September 29, 2013

All in School!!!

All three kids are attending school this year!!! Katie is loving Kindergarten and is really beginning to find her niche. Andrew is in a regular 3rd grade class. We had the expected beginning of year issues with Andrew, but he now seems to be settling in nicely. The biggest change is that Benjamin went back to school this year after 2 years of homeschooling. He is in the autism/behavioral class at our local school and is also mainstreamed into the regular 3rd grade class for a good portion of the day. He is doing fantastic! We've had a few hiccups (of course), but his good days have far outnumbered his bad ones. The teachers see his potential and are working diligently with him to help him to achieve it.

I get asked almost daily: "WHAT will you do with all of your time now that they are in school." My answer to them is almost always, "Sleep!" While I have taken my fair share of naps over the last few weeks, that is definitely now how I spend the majority of my time. For one, I am back to going to the gym at least 4 days a week; I was also finally able to get my bedroom and bathroom deep cleaned (after I don't know HOW long... longer than I care to admit); I am blogging again; I am enjoying going to the grocery store without having to drag my three kids with me; I am sometimes going to breakfast with my husband... because we CAN. Basically, I am enjoying my few hours of kid-free time every morning and am starting to feel more in control of my life.

While homeschooling, I felt like everything was getting out of control. I was overwhelmed with having to work very closely with Ben to get him to do his schoolwork while still homeschooling Kate so that she was prepared for Kindergarten. Then, I always had a deadline to finish our schooling for the day so that I could pick up Andrew from school, work with him in the afternoon and still fit in all of our after school activities, including therapy. My housework and workout routine were the hardest hit with the chaotic nature of our schedule. I often felt frustrated that I couldn't achieve all that I wanted to in a day.

One biggest benefit of them all being in school this year is that I am back to the more patient, fun-loving mommy that I want to be. I have a lot more patience with Andrew when he comes home exhausted and overstimulated from a full day of hard work at school. I am far more patient with Katie when she asks to read 4 or 5 books when I know I should be cleaning. I am far more patient with Ben when he runs away when I tell him to get up to the table for homework. I am playing with my kids more. We have spent a lot of time outside and I am loving that they are all begging me to jump on the trampoline with them or ride bikes with them. The few hours to myself during the week allows me to focus on me. That is something that I haven't been able to do for the last 9.5 years and I think everyone is benefiting from it.

Saturday, September 28, 2013

Feeding Issues? Understatement!

Ben: "Mom? Can I have some chocolate chips and fruit snacks and Doritos please?
Kate: "Mom!? Can I have some peaches and some red and green peppers and some carrots for snack? Make sure you give me lots of red ones! And broccoli for dinner!" (This is not a dramatization...this was a real conversation I had with my children an hour ago).

I stare at both of my children dumbfounded and wonder where I went wrong with my son and how I could have possibly done better with my daughter. Then, I wonder why it is that I am bribing my son to eat 9 grapes (since he is 9 years old) with the aforementioned junk. At least THAT answer is fairly easy.

Benjamin has feeding issues. He isn't picky in the traditional, "my kid doesn't like veggies" sense. It goes far beyond that. Some feel it is from the lack of strength in his jaw from the CP. Some feel it is one of his autistic traits, some feel it is just behavioral. One thing that I am sure of is that it is one of the worst parenting issues I have ever had to face. 

When he was a baby, he left the hospital a month after Andrew because he had a difficult time with taking a bottle. He got the hang of it eventually, but feeding was still an hour long ordeal. I made all of their baby  food  once they transferred to solids and noticed that Ben did not like increasing textures. He tolerated some eventually and around age 1 was moving to table foods. 

Then, he got a cold. He was coughing so badly that anytime he ate anything not completely puréed, he would vomit. Being fearful of my underweight, high risk preemie losing weight, I fed him baby food and yogurt to get him through his illness. After that, he refused to eat anything with texture to it.

We began very expensive feeding therapy, which only made it worse. It made him anxious at meal times and suspicious of hiding foods in the textures he would eat. At age 3, he was eating 6-8 jars of 3rd stage baby food in a sitting and supplemented his diet with yogurt and Pediasure. There was talk of feeding tubes if he did not continue to gain weight, but I was not about to give up on him learning to eat. 

On Easter when he was 3.5, I walked in his room to see him scarfing down M&Ms from his Easter basket. I immediately went downstairs and threw away all baby food in my pantry. If he could eat candy, he could eat other things.

And so began the excruciatingly slow process of getting Benjamin to eat. I scoured the Internet for ideas and suggestions. I was very fearful of feeding therapy from our past encounters, but I did ask some therapists for some advice. 

We started with "take a bite, get a bite." If he took a bite of a new food, he would get an M&M. It was very slow going. He would often "pocket" the food in his mouth and refuse to swallow. He would cry and I would cry. Mealtime was dreaded. 

He soon learned that he liked Cheetos, graham crackers and chocolate chips. Soon after came the first real meal he ever ate...ravioli with meat sauce. That opened up a whole new world for us. We had called the ravioli "spaghetti" at first, so anything with red sauce was soon called spaghetti. He liked spaghettios, spaghetti, ravioli, and lasagna and freely ate those without any issues and eventually without bribery. We still supplemented with Pediasure daily.

He is now 9 years old and I would love to say that he eats a well balanced, completely healthy and diverse diet. While he has now expanded tremendously from his 3 year old diet of baby  food  and yogurt, mealtimes are often frustrating. His favorites are still red sauce based foods, but have expanded to include "chili a la spaghetti," "enchiladas a la spaghetti," and cheese pizza. He loves plain canned pumpkin (weird, I know) and loves when I add it to pancakes. Sandwiches are new within the last year or so and we are now able to get him to eat bites of most of our family meals without too much fighting. He loves chicken nuggets. He will voluntarily eat bananas and raisins and will eat broccoli, grapes and green beans fairly easily. His old rewards of chocolate chips, M&Ms, chips and fruit snacks are still items he wants on a regular basis. The most exciting event this year was the transition to milk instead of Pediasure. We have been working on that for about 2 years. 

It has been a long, frustrating experience. Whereas Kate just picked up her food and ate it as a toddler, we had to fight for every bite with Ben. People just plain don't understand why we were so excited the first time Ben ate a donut or a hotdog or a bite of ice-cream... Or why I cried hysterically on the day that Kate ate her first Cheerio, which happened to be the same day Ben ate his first Cheerio.

If you are dealing with feeding issues with your special needs child, know that you are not alone and that there are those of us who understand the daily struggle. It isn't easy and is extremely emotional. Other parents don't get it because they can't. Having Kate has made me realize that there is a lot that parents of typical kids take for granted and that's just the way it is. Like so many things, you have to live it to understand it.