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Seeking the Inner Voice of Autism

Posted on October 21, 2013 12:00 am by TheAngelForever

As a parent of a child with autism, I often wish I could understand how my son sees the world. There are differences and if I understood them more I could not only help NHL at home, but communicate this to others that work with him on a daily basis at school. For years before we had answers and our diagnosis, I struggled. The level of frustration for both NHL and me was clear and it hurt not knowing how to help my own child. The reality is that I can’t beat myself up because I simply did not understand and TechyDad and I searched high and low for medical professionals to give us more answers. Once we knew that we had an Aspie, we regrouped and started to parent differently. Each day, we put one foot in front of the other and take it one moment at a time. As I noted the other day, sometimes you just need to laugh or you will cry.

Several weeks ago, I remember seeing Jon Stewart mention a book that was flying off the shelves that he adored. Then my mother mentioned a post from my cousin on Facebook. Both were referencing the same book, The Reason I Jump by Naoki Higashida and introduction by David Mitchell. When I read that it was written by a 13 year old boy and was his inner voice as a child with autism, I knew that I had to read it.

I picked up the book at our local library the other day, but I have to tell you that I will be buying a copy. While I have not finished the book just yet, it is phenomenal. The introduction alone is a power house and then you begin reading the translation of this amazing young Japanese boy with autism. His words hit me hard. My son is just a few years younger than he is. I can imagine in time that these may be thoughts in his mind. More than anything, I stopped to think about our life, things that happen here, and how these words could be used. I envisioned making reminder cards for people and suggesting to some to read this rather short and powerful book. Higashida answers questions throughout the book like Q13 Do you prefer to be on your own? My heart broke reading his answer. Anxiety and knowing that things usually go wrong in social situations often make him (and likely my son) stay to themselves. Rather than be flustered, worry about what others think (causing them trouble as he says), and not knowing how to respond in a social situation they often end up on their own.

Here is part one of interview that Jon Stewart had with David Mitchell on The Daily Show that will give you a taste of what the book is really about.

As you can see, so many myths of autism are crushed thanks to this one amazing child. The level of empathy he has reminds me of my son and I have to admit I now worry that he sees too much in my world as an autism advocate. Forgive me for cutting this short, I am off to finish reading because I do believe there will be much more to share soon. I encourage everyone to take some time to read this book because it is a life changing book.

Categories:
books parenting Special Needs

Sparkle Minnie Ears in the Name of Autism Advocacy

Posted on October 16, 2013 1:18 pm by TheAngelForever

Being a parent advocate for any child is an important part of the world of parenting. Then, add into the mix, being an autism advocate each and every day while living in the moment. This is my world, and while I would never change a thing, it can be challenging and overwhelming at times. Over the last year, I have learned how to use my voice to more effectively communicate with the individuals that work with my son. The team that works with him listens to me and knows that I will back them up and be as patient as possible.

Of course, when a meeting crops up and you are the parent, nerves can get the better of you. For some reason, these meetings were so much different on the other side of the table as the teacher. No matter how many meetings you prepare for, the serious nature can get to you. This morning, I was done feeling that way and sent out the following Tweet:

Before I knew it, I was pulling out my ears, sharing a photo, and debating this.

For ten minutes, I debated what to do. Then I felt the tension in the house as we left toward school and put my ears on. First, I wanted to see if the boys would notice. They did, mostly because my depth perception getting into the car with said sparkle ears was a bit off. Ooops!

As we walked into school, I was smiling and less nervous. The kids and I had fun seeing the reactions of a parent in New York walking into a school with Minnie Mouse ears.

The best part was keeping a straight face and acting like I was doing nothing out of the ordinary. Seriously, it was therapeutic. Yes, my Minnie ears gave me laughs and brought me smiles as I was heading into a meeting.

When asked why I was wearing them, I admitted it was to make me laugh so I wouldn’t cry. The reality was this little bit of Disney sparkle and magic helped me through this autism moment. You see, Disney reminds me of a place where I know my son can be who he is without the stresses of every day life. He can be happy, we can all be kids at heart with less worries, and most people do not judge. That is magic and sometimes you just have to bring that little bit of Disney home with you and use it when you need it.

Oh and a special little thank you to Emily, your post yesterday made me think of wearing my ears today.

Categories:
Disney parenting Special Needs

First Day of School 2013

Posted on September 9, 2013 10:33 am by TheAngelForever

Last year, I brought my “baby” to kindergarten and it was a hard moment for me to get through. This year, the first day of school was even more bittersweet. This is the last time my boys will ever be in the same school together. I love knowing that they are in the same building just in case they need something from their brother.

This morning, the boys were ready for school in record time. TechyDad stayed home with us to go for first morning drop off together. Before heading out, the boys posed for a traditional first day of school photos together. Here are my first and fifth grader before going to school.

NHL was so excited to head back to school. Routines are huge for him and school provides that. He was so positive and trying to perk up his little brother. These are items I will miss when they are not heading in the same direction next year. I will cherish watching them walk to the car together.

I will try to savor the moments of them chatting with each other when walking into the building rather than focus on them bickering.

While I sit in a house that seems too quiet, I have a few simple wishes on this first day of school. I wish for both of my boys to have a wonderful year ahead of them. I wish for NHL and JSL to learn, grow, and be the best that they can while helping others in the process. I wish for no drama and tears in the days ahead. Most importantly, I hope to see smiles and excitement about learning new things about the world around them.

It's Me

Categories:
parenting school

Special Moments with Your Children

Posted on August 29, 2013 12:00 am by TheAngelForever

As the summer winds down, I am getting a little sentimental. My boys are growing up. I think it hit me last night when JSL woke up out of the blue early in the evening. He came over to the couch where I was sitting and getting some work done. The next thing I knew, he was curled up in my arms and fell fast asleep.

My heart melted at that moment. I immediately took a photo to capture this moment because you never know if a six year old will do something like this again. It left me wondering how many more moments like this I would be able to experience with my boys. They truly are growing up too quickly.

It has been a great summer. Each of the boys went to camp one week and loved their experience where I signed them up. While one went to camp, the other kiddo and I did special things together. JSL and I went to lunch, saw the new shows at the planetarium that we are members at, and kept cool in the crazy hot week by playing at Nana and Papa’s house. NHL and I went to Menchie’s to try it before everyone else in our family. We also were able to see Smurfs 2 and Turbo. I was able to get to know each of them a little better without the other being there. While our summer as a group has been nice, being able to give one child all of your attention and not worrying about the other was refreshing.

These moments made me think that while TechyDad and I need to have special moments with the boys together, I think we need to add another item. Perhaps we will set a time each month where we do something special with one of the boys alone. They could use this time and it would be interesting to see if we go for a hike, make a craft, read a book, or something else like that. We do not have to spend money, just make memories before the kids are grown up.

Do you ever have special “dates” with just one of your children at a time? I would love to know some of the things that you have done or what you would like to do if you tried something like this.

Categories:
family milestone parenting summer

Tenth Birthday Milestones

Posted on August 16, 2013 12:00 am by TheAngelForever

Dear NHL,

I sit here in disbelief. Ten years ago right now, I thought I had another two weeks before you would arrive and was trying to finish the latest Harry Potter book that had come out. I knew that once you were here, I would have little time to read. Of course, you decided to surprise me on the evening of August 16, 2003. When I stood up, heard a pop, and ran because I knew it was going to be time. The next twenty-four hours were a blur. I only remember seeing your sweet little face and falling so much in love.

How can you be turning ten already? I find it too hard to understand the concept of you being in the double digit numbers already. Even harder for me is to realize how much you have grown up this past year. Of course, a lot of that was not by choice. Circumstances happened and you had to learn to be an advocate for yourself. Though I wish some of the items never occurred, I am so proud of you and how you handled yourself. Though your new independence and tween attitude is hard to get used to, I will always love you no matter what.

Now let’s take a look back at the last year that has become a tradition of sorts.

Your ninth birthday was filled with all things related to Harry Potter. You loved all of the special LEGO books, the Hagrid’s Hut set, and the Hogwarts set that people gave you. You spent a lot of time building and rebuilding all of them while having nightly read aloud of the books with Daddy.

Fourth grade started and you were an amazing big brother. I think you may have been more excited about JSL being in the same building than anyone. You showed him our first day of school traditions and helped us to get him ready for the day. Meanwhile you could not wait to meet your substitute teacher who would be starting the year in your classroom. Little did we know that she would be an angel to our entire family to get you off to a fantastic start. (September 2012)

Much of the month of October was spent getting your Halloween costume ready. For the first time in many years, you knew exactly what you wanted even before we went to the store. It was no shock to us that you wanted to channel your inner Harry Potter. I have to admit, your glasses really made the entire thing work beautifully. (October 2012)

November started a stressful time with a lot of changes to your world. By the time Thanksgiving rolled around, we were all ready for some time away from school. The long weekend gave you time to play with your cousins, celebrate Chanukah a little early, and get some fun back into your life. (November 2012)

During part of November and December you were participating in Science Club once a week after school. You adored the experiments and items that you learned. I think it was thanks to this that I knew the camp we had to look into this summer. Along with celebrating Chanukah, you adored getting to go outside and actually play, build, and explore in the snow. (December 2012)

2013 began rather quietly. Behind the scenes I was working on items to help you at school. There were a lot of road blocks and I think you likely sensed my frustration. As you know, I did not give up and eventually we were successful in turning things around. I only wish I had raised my voice a little louder and not let some bullies stop me. As we go along this journey, you will see that I learn something new about parenting while we move forward. You and JSL also helped me to do some book reviews. Both of you loved when they involved using the iPad. (January 2013)

Snow, winter break, and power outages meant that we stayed inside a lot. We made forts and even tried something new that I found on Pinterest. You loved helping to create the slime and used it for hours over many days. Another favorite item was creating mazes with the bricks that you received for Chanukah from Aunt A and Uncle J. (February 2013)

Spring time was a bit rocky from time to time. You were so very frustrated with some items happening outside of home and nobody else was listening to us. Then you did something that I was so very proud of, you learned to use your words and voice to be an advocate for yourself. You told people why you were scared of certain things and in doing this helped to teach others about autism. Of course, while all of this was happening we also prepared for Passover and you had fun being silly during our Seder. (March 2013)

As the weather started to get warmer, things started to settle. It was so nice to see you happy and excited about things again. Seeing the smile on your face made me know that I was doing everything right as your advocate. One of the highlights for our family was going to the Albany Children’s Book Festival. You made getting author and illustrator autographs a sport. (April 2013)

As testing season at school began, we told you that we were not going to allow you to take them. This was hard for you to understand. In the end, you realized that it was not a punishment to you, rather we were looking out for you. One day you will understand more of why we were vocal about this topic. The rest of the time you were busy helping us to prepare for JSL’s birthday and making Mother’s Day special with my boys. (May 2013)

The end of the school year was filled with supporting teachers and educators. Dad and I made the decision to take you and JSL to the rally at the NYS Capitol. It was a powerful day seeing you there with your teachers. As we made our signs for the rally, we talked about the importance of learning and why your teachers need to have more freedoms to do what is needed in the classroom. In addition to this, we went on your field trip, got to pick strawberries, and went bowling a number of times. (June 2013)

The summer has been a time to get to something rather big. Just before Independence Day, you had your braces put on. You were amazing when they went on and have done so well following the rules. You also went to Science Camp for a week and had a blast. I think you were sad when it ended. We have also gone to visit a lot of science museums thanks to our membership at miSci. (July 2013)

I hate to admit to you, but this birthday of yours is making me extra sappy. Turning ten just seems like such a milestone and is hard for me to really imagine. It seems like only yesterday that you were starting kindergarten and now here you are going to fifth grade and your last year of elementary school in a few weeks.

Always know that I am standing behind you and cheering loudly as you not only show me, but everyone else in the world who you are and why they need to get to know the real NHL. Never let anyone tell you that something is impossible, if you put your heart into it you can make any and every dream come true.

Love,