Family Fun Day

Her one request all summer long was to go to the amusement park with the water park. At least once a day she asked when we were going. I promised it would be before school started. She didn’t seem to believe me though. Day after day we heard the same comments, “We won’t have enough time to go, it’s going to rain, you will never take me.” Finally though, the date went up on her calendar. Yes we were going to the amusement park. And now the focus in her head was the weather. “It’s going to rain we won’t be able to get in. ”

The day came and the sun was shining. The humidity was down too. It was the perfect day to spend at an amusement park. As we were driving and getting closer however I see the big black clouds that we are beginning to head into. I was hoping she wouldn’t notice the raindrops as they started to fall on the windshield. I purposely didn’t put on the windshield wipers. She noticed. She wanted to go home. No way were we going home as we just pulled into the parking lot. It was summer rain. It only lasted a few minutes and the sun came shining through. We were saved.

Into the park we went and headed straight to the water park. This is what we had been waiting for all summer long. Her bathing suit had been on since early in the morning. And there we were and she wouldn’t do anything. She stood in the same spot in water up to her ankles for over an hour. We coaxed, we suggested, we asked why, we asked if she wanted to leave. She insisted that she wanted to stay right where she was. We stood next to her and waited. This is when mom and dad patience comes into play. Again we tried to coax her into the water. We tried very hard to get her to go in. Kids were running everywhere laughing and having a blast. And there stood our daughter, frozen in her tracks, stone faced.

Finally she said she was done with the water park and wanted to go on some rides. We were more than happy to reply to her request. At last it was time to see our daughter having fun with a smile on her face. We walked around the park and as we passed each ride we asked her if she wanted to go on. “Yes, no, I don’t know,” she couldn’t make up her mind. We passed the ride that cracked her up last year. It’s a water ride that gets you totally soaked. She dragged me on last year and laughed and laughed seeing her mother dripping wet. I asked if she wanted to go on. “Yes, no, I don’t know,” was her answer. We tried to get her to go on but in the end she said, ” I got wet at the water park.” I think to myself, really that is your excuse. You got your toes wet. I will admit however I was relieved that we avoided the ride. Walking around soaked to the bone is not something I find enjoyable. I would have gladly gone on though with a smile on my face if she had wanted to go on. We walked and walked around the park several times. She went on one ride asked for an ice cream and we were done.

It should have been more fun. How can you go to a water park and not get wet? How can you resist the fun of going on a ride? Driving home I was disappointed that the day my daughter had been looking forward to all summer was not filled with excitement and smiles.

When we got home she was very tired and went to bed early. I sat with her before she fell asleep and talked about our day. She told me she had a good time and a lot of fun. After all of the misery that I had put myself through thinking that she was having an awful time, she really was enjoying herself. Sometimes we forget that just because we experience things a certain way doesn’t mean our daughter does.

This is where that communication piece plays a part. Our daughter is very verbal. She can speak very well and carry on a conversation. She has a hard time however expressing herself. She was not able to tell us at the amusement park that she was perfectly fine doing nothing. Instead she listened to us question her all day long. She should have told us to stop talking and be quiet.

We all want our children to be happy and sometimes we push our beliefs on them. Most children will let you know what they do and don’t like. Often times we enroll our kids into classes and programs that we think will be fun and exciting but turn out to be just the opposite. Typical kids will tell you that they don’t like it. It’s harder to figure that out with our kids that can’t verbally communicate it. You find yourself second guessing yourself a lot of the time.

The same thing holds true for school. A lot of our kids can’t verbally communicate what works and doesn’t work for them. As parents it’s up to us with the help of the IEP team to figure it out. We need to set realistic goals based on our child’s needs and not on our own personal needs. Just because you are very social and enjoy being around a lot of people doesn’t mean your child does. We all want our kids to be social and have friends. We set up goals to try and teach them how to be social on the playground and in the cafeteria. What if however your child prefers not to be social? What if they are happy just to stand in the sidelines and watch? Perhaps you are a very athletic person and enjoy playing sports. You put a goal in your child’s IEP that they will participate in all gym activities. What if your child dislikes gym and has no interest in playing sports? I’m not saying that you should never try to teach your child these things. Absolutely put those goals in the IEP. They are important. By all means give them the opportunity to succeed.

Sometimes however our kids don’t succeed. We as parents usually blame the school for not following through. And yes sometimes it is the school’s fault. Sometimes however it’s just our child letting us know that they don’t like what they are being asked to do. Sometimes we are in denial that our child does not like the same things we do. If they could tell us that, life would be much easier. We can’t assume how they are feeling based on how we react to certain things. Every child is unique and has their own way of communicating their needs.

It’s been a long day. My daughter is exhausted and in bed from all the fun she had. This exhausted mom is heading to the couch with an adult beverage in hand and is going to silently communicate her needs.

Lessons Learned From Death

This journey has taken us on many unexpected stops. This past week we have dealt with death, a very unexpected death in the family. We were all dealing with our own emotions and then there was Kelsey. Her anxiety plays a big part in who she is so I hide some things from her and don’t tell her everything. When a family member passes away however there is no way around it. I had no idea how to tell her so I googled it. Although there was no answer to the right words to use, it did say that every child grieves in their own way. All children deal with death differently.

For Kelsey it meant, at least this time, that not one tear was shed. I for the other hand cried for days and was expecting the same from her. Instead, when I told her the news she looked at me and said she was not sad and then proceeded to put on her headphones and tune me out for the rest of the day. She went to bed early that night holding her favorite stuffed animal. In the morning she woke up and asked a few questions. She was dealing with this in her own way in her own time.

Kelsey chose not to go to any of the services. With the help of our village we found friends to come and stay with her while we were gone. Thank you again to the both of you. You are appreciated more than you can know.

As the services at the cemetery concluded the funeral home director said that he believed the family was going to be all right because they had such a strong community supporting them. It made me realize that just as special needs families have their “village” of people supporting them, neurotypical families have their community.

Sometimes it seems as if this world is filled with nothing but horrible people. It isn’t. There are villages and communities supporting one another. It’s our families, our villages, our communities that matter. It’s people supporting one another day after day. And to our village of people, you make a difference. We are grateful to have you in our lives.

Death is not an easy thing. These past few days however I have learned some things:

1) We all grieve in our own way. Whats important especially for our children is to just be there and keep routines as normal as possible.

2) Family is everything in life

3) Neurotypical families have communities. Special needs families have villages. They are both it he same. People supporting people. Be grateful for the people in your life.

4) I’ve questioned my religion for many years and doubted many things. Often times families of special needs children face isolation from their religious community and thus stop participating. I may have left my church but my personal religious beliefs never left me.

5) Live your life each and every day and always be kind to the people you meet along the way.

6) Having a child with special needs and seeing the world through their eyes through both the happy times and the sad times is amazing.

Long Lunches, Princess Talk And Mama Guilt

My daughter and I have been having long lunches together this summer. We sit for at least an hour and the conversation is always about the same topic, Disney Princesses. She has become quite the expert and once the conversation starts it’s hard to end it. The other day we were discussing the movie Frozen. If you don’t know the storyline (which is hard to believe in this house) it’s about two sisters Elsa and Anna. Elsa has been cursed with ice powers and rather than accepting it her distraught parents keep her locked in their castle hidden away from everyone.

As we were discussing the movie for the gazillionth time Kelsey’s exact words were, “Just because you are born different you don’t lock your kid away.” This is where my mama guilt hits me like a slap across my face. There was one year when Kelsey was little that we hardly left the house. She was having seizures all the time and I had become the “distraught” parent that thought it would be best if we just stayed home. That decision to stay home wasn’t about fear of other people finding out but about my own fear and lack of understanding about my child’s disability. To this day however, that mama guilt gets a hold of me.

Sitting at the kitchen table engulfed by guilt I listen as Kelsey is still going on about the movie. Her statement caught me off guard and made me rethink the movie. She seems to have picked up on the underlying story. Frozen is not just another cute princess movie with catchy songs. It’s a story about a young girl with a “disability” who must learn to control and accept it. In the beginning Elsa doesn’t know how to control her powers and her parents thought it was best to keep her away from everyone. The famous song lyrics let us know that as a child she was told, “Don’t let them in. Don’t let them see. Be the good girl you always have to be. Conceal. Don’t let them know.”

At one point in the movie Elsa has an outburst and unleashes her uncontrollable powers in front of the townspeople. She gets scared and bolts far away to the mountains. It’s here that she learns to control her powers. The song goes on, “Let it go! Let it go! And I’ll rise like the break of dawn! Let it go! Let it go! That perfect girl is gone!” Elsa has finally showed the townspeople she is not the perfect person they thought she was. She is free to be herself, powers and all.

I wonder if Elsa’s parents were still alive what they would think of her. No longer is she that child with the uncontrollable outbursts. She has learned to control her own actions and rise above her own “disability”. I wonder if they would feel guilty about how they dealt with some things in the past.

The Turkeys Under The Bed

I’ve done quite a few things I never could have imagined doing for my children but I never thought I’d be checking under the bed for turkeys. I’ve checked for monsters and I think I have checked for the tooth fairy at least once or twice, but turkeys never. Never that is until now. I walked into her room and she said she was scared. Scared of what, I asked. Her response, “I heard a noise under my bed and I think it’s the turkeys.” I looked, and lo and behold there were no turkeys. I’m almost certain that not too many parents have had to check under their child’s bed for turkeys. I however knew the reasoning behind this.

We live in a city not too far from Boston. We have woods and ponds and green spaces but we are far from being considered “the country.” Our yards are filled with rabbits and chipmunks so when you look out your window and see turkeys it catches you off guard. We have had two turkeys making their way down our street a few times this week. Our neighbors came out and watched with us. It was a sight to see. My daughter however wanted nothing to do with it. No way was she stepping outside to watch. That should have been our clue that we would be talking about turkeys long after they were gone. She was annoyed at their first visit. After all they don’t belong here and they certainly were not invited. And the nerve they have for coming back a second and third time.

The plan now is to casually distract her from looking out the window when ever those turkeys return. It’s the same strategy we used when the ice cream truck used to come and stop in front of our house every day (every single day for one very long summer). Out of sight out of mind. In the meantime we’ll keep checking under the bed and anywhere else a turkey might be lurking. And if by chance we do find a turkey under the bed one day, the For Sale sign will be put out front.

Maybe Next Year

We tried really hard to make this the year we watched the 4th of July fireworks outside. In the end it didn’t happen, but that’s okay. My daughter seems to have her own timeline for doing everything. Forget the developmental milestone chart that is hanging in the pediatrician’s office. My daughter accomplished things in her own time in her own way. She was speaking in sentences at her first birthday party. She however didn’t start walking until she was 17 months old. She learned to tie her shoes when she was in middle school. She wore pull-ups to bed well into her teens and was 20 when she began to fall asleep by herself.

And with all of her accomplished milestones we accomplished patience. It’s a very hard thing to watch your child fall further and further behind their typically developing peers. Most children will move forward however even if it’s the smallest baby steps. When our children are young it’s hard to imagine all that they will be able to accomplish as they get older. They might not accomplish all that we hoped for but somewhere along the way you will stop and realize all the amazing things they can do. In their own time and in their own way they will accomplish so many things, little things that often go unnoticed until you look back. And as they accomplish more and more things we learn the true meaning of patience. Patience is our lifeline.

When my daughter was little the 4th of July was something to be dreaded. Fireworks and parades was not something she looked forward to. The noise and unpredictability was unbearable. This year however, the timing was right and we went to a parade. It was a big noisy parade with fire engines, marching bands and bagpipes. And oh those Disney Princesses were marching along too. That is honestly the motivation that got us there. She brought her headphones and put them on whenever she needed to. She has learned how to adjust. Going to a parade is something we never imagined doing when she was little but she did it. It might not be an official developmental milestone, but for us it is.

With the parade behind us we thought we could get her to watch the fireworks. We have never watched fireworks outside with her and it just seemed like the thing to do since it was the 4th of July. We tried hard to persuade her but she wouldn’t go. Instead we stayed home, broke out the glow sticks, watched the Boston Pops on tv and stayed up late to watch the fireworks. It was a really fun evening. Maybe next year will be the year she goes to watch the fireworks. We’ll just have to be patient and wait and see. And if she doesn’t want to go we’ll stay home and have another great 4th of July evening and try again next time.

If You Really Want My Vote

Dear Candidate Running for City Office,

It’s an election year. If you really want my vote I am asking you to address the need for our city to become inclusive for all. A city that fully supports the needs of all its residents. You talk about the young, the elderly, the middle class, the lower income, but I never hear you mention the disabled.

It’s time our city becomes a community where all are welcomed and valued. It’s time our city becomes a community that is 100% accessible to all of its residents. It’s time our city becomes a community where everyone is educated and aware of its disabled population. Our police officers, firefighters, EMTs, store clerks, city workers, business community and neighbors need to gain a better understanding of the needs of our disabled community.

Everywhere I go these days I notice our city as well as most other ones are putting in bike lanes to accommodate the needs of our bicyclists. Bravo for hearing what that group of our community needs. Bravo also for making the city more wheelchair accessible. There is so much more however that needs to be done.

Just because a city has wheelchair ramps to allow easier access to places doesn’t mean it’s community is inclusive. We need to do a better job educating both children and adults about things such as handicap parking spaces and the importance of shoveling walkways and sidewalks in the winter. We need to be a community that is more considerate of each other’s needs.

Our city has an increasing population of children with Autism and other disabilities. Let’s talk about their needs. For instance, it’s summertime and do you know what this city needs? It needs better parks and playgrounds for ALL of our children. We need fenced in parks with high fences and gates that actually stay closed. We need parks and playgrounds with equipment that is better adapted to our children’s needs. We need parks and playgrounds where our children can go and not be excluded and stared at by both other children and adults. We need to be a community that is more considerate and aware of each other’s needs.

There is a growing trend across our country to make more places “Autism friendly”. Amusement parks, water parks, vacation resorts and housing complexes are being recognized as being inclusive to all. If places like this can exist, why can’t our communities? Just imagine living in a city with not only bike paths and wheelchair ramps but a community that supports, understands and adapts to the needs of the children and adults living there with disabilities.

So to the candidates running for office in cities everywhere let’s start the discussion. Many people are listening.

Sincerely,

A Registered Voter

In The Good Old Summertime

It’s summer. Our kids are out and about everywhere. The routines, schedules and familiar faces are gone. Sometimes the good old summertime isn’t so good. Sometimes when we are out and about our kids let us know that they don’t want to be there and sometimes it’s not in a “society accepted” way. I’m sorry if this annoys you but I would appreciate it if you keep your thoughts to yourself.

I was out with my daughter the other day and we were at an unfamiliar place. It was something she wanted to do so we planned it and went. When we got there however she panicked and did not want to go in. She gave me a shove and started walking away. An older gentleman looked at her and told her not to treat her mother like that and that she was a bad kid. I wish at the time I could have told this man what he could do with his thoughts. Instead I took my daughter and left.

In the past when she was really panicked she would spit in my face and start lashing out. Those days have been long gone though and she has gotten much better at communicating her fears. This incident was unexpected and nothing like it used to be. It has taken years of hard work to get where we are. So to the man that told my daughter she was a bad kid, “Mind your own @#$& business!” We sat in the car for awhile and her words finally came. She said she was sorry and was just scared and wanted to go home.

Summer is a hard time for some kids. The routines, schedules, familiar faces and places are gone. As fun as summer is supposed to be, some days it just isn’t. Lots of kids are off from school and parents are trying to keep them occupied. If you are out and see a child having a hard time don’t judge, don’t criticize and don’t chastise them. This holds true for social media too. Don’t post it. We’ll see it and all of the comments that follow it. Please don’t judge another person’s child that you have absolutely no clue about.

Special needs parents are always told to brush it off and not care about what other people think. Well do you know what? Brush it off or not, it hurts. Our children hear what you say too and it hurts them as well. We are one community. Instead of judging, understand and accept.