I was looking at the pictures on my phone the other night and one stood out. Of the nearly 3000 photos this one caught my attention. October 23, 2015 my daughter Kelsey eating chicken noodle soup. Our phones are full of pictures of our children doing many wonderful things. I’ve seen pictures of kids standing in front of the DMV holding their drivers license. Sometimes it’s pictures of the first paycheck or the college acceptance letter. And here I have my child eating chicken noodle soup. That day in October however was a moment that I was not going to let be forgotten. That can of soup was the first thing she ever purchased in a store by herself. Some people keep their child’s first pair of shoes or their christening outfit because of the important milestones they are. I kept that soup can.

Kelsey was just starting her transition program at high school when she purchased that soup. Now that she is coming to the end of that program it is amazing to see all of the pictures on my phone of the things she has accomplished. She never learned to drive but she learned to make a bed and she makes her own every day. I have a picture of her bed on my phone. She never got a college acceptance letter but she received a high school graduation certificate. I have a picture on my phone of her walking across the stage to accept it. Kelsey can do laundry, make a sandwich and has earned lots of medals from Special Olympics. Different accomplishments than other girls her age yet all just as important and all defining enough to be captured in photographs. Her journey and her accomplishments have been her own on her own time. Accomplishments that many people take for granted. Her path has been different than most but filled with milestones and picture worthy events just as everyone else. I’m so looking forward to the pictures to come of the things she has yet to accomplish.

The Next Chapter

It’s the beginning of the end. The process has started. Our journey is now headed down the path toward transitioning to adult services.

The wheels have been set in motion. This week we signed the papers to start the next chapter of our daughter’s life. Signing that form was an incredibly defining moment. In a room full of people I’m sure no one else could grasp how hard that was. Those 20 seconds that it took to sign that paper will forever be a vision in my mind. Those 20 seconds changed our daughter’s life.

Guardianship has taken on new meaning. I now understand it’s necessity and purpose. There is much debate about guardianship and taking away your child’s right to make their own decisions. For us guardianship is the right thing. Becoming your child’s legal guardian is something no parent wants to do. Making decisions for your grown child is hard to do. This week we made one of the most difficult decisions we have ever made on our daughter’s behalf. We chose which path she will follow after she ages out of public school. We have begun to write the next chapter of her story.

With that decision made comes as always on this journey the second guessing. Through the years I’ve learned to rely on my gut feeling. This is one of those times. I know the program we chose for her is the right one. Gut feeling and all it’s still an unsettling mind game. I keep justifying in my mind all the reasons it’s the right program. I’ll be driving in my car or grocery shopping and in my mind I’m finding more reasons to justify our decision.

Call me crazy but with that list of justifications in my head I received a sign this week. A sign that it’s all going to be okay. Again feel free to call me crazy, at this point I certainly am but hey there’s no turning back. The Irish song Toora Loora Loora has been stuck in my head for the past few weeks. When Kelsey was little my mother used to sing her that song all the time. Kelsey and “Nana” shared a lot of time together. Nana was Kelsey’s best friend. As I was scrolling through posts this week something popped up in my feed about that song. I found out that it is believed the words Toora Loora Loora mean goodbye. Perhaps it’s just a coincidence that as we are preparing Kelsey to say goodbye to a life and routine she has always known that song and the meaning of those words should pop up in my feed. I think not. Crazy me is calling that a sign. A sign from Nana letting us know that she is with us as we venture on this next part of our journey. So for now I’ll keep singing that song in my head and trust my gut that this is all going to be okay. Toora Loora Loora the next chapter has begun.

‘Twas The Night Before The First Day Of School

‘Twas The night before the first day of school, When all through the house I stirred everything up looking for the last IEP signed by me and my spouse; My child was never going to bed; While visions of school danced in her head; The backpack that I had just emptied out last year’s stuff, Was put by the door in hopes that the morning would not be rough. And I still in my tye dye shirt, and Dad in his summer shorts, had just settled our brains after another long summer’s day. Eventually we must have dozed, Slept through the alarm until I heard a clatter, I sprang from my bed to see what was the matter. Away to the window I flew in a mad dash, Tore open the shutters and threw up the sash. The streetlight still lit in the early morning, Gave an unwelcome to the first day warning. When what to my wondering eyes should appear But a white van and eight children full of fear, With a van driver rushing us out quick, I knew in a moment he must know the trick. More rapid than the new administration they came, And he smiled and reminded us many faces would be the same. “Now, OT! now SLP! now PT and TVI! on BCBA! on ETL! on Sped teacher and Para! Back to school! to walking in the hall! Now off to work! off to work! off to work all! As the endless hours it takes before a new skill is learned, as success comes after many a try, When the team and the child coincide, forever high they will fly; So off to school with a team waiting for them the van full of kids went, With a hope of success and another year well spent. And then, before the day ended I heard the phone ringing. It was the school, I was sure bad news they were bringing. And then I heard the voice on the line, The team had called to say my child did just fine. And as I thought in my head and was trying to utter a sound, Down came my blood pressure with a bound. The news was something I didn’t expect to hear. What a great thing you did to lessen my fear. A bundle of great news you flung my way. What a great first day. My eyes how they did open wide, The smile on my face I couldn’t hide. You addressed my concerns right from the start, And all of my tarnished thoughts I could part. The sign of a good year I held in my heart. The team was with us right from the start. Your phone call lasted only a few, You explained you still had work to do. The tone in your voice made me think in my head I had nothing to dread. You spoke your last word and went straight back to work. I’m sorry I ever doubted you, I was a jerk. And putting all of my fears aside it was teamwork I chose, Together is how every child grows. I sprang to my computer and sent our team a shoutout, And away my concerns went, this school year was going to be a success I had no doubt. And as the van dropped my child at home I heard the driver exclaim as he drove out of sight- “Happy first day of school to all and to all a goodnight.”

Make It Happen

Yesterday My daughter and I went to another princess meet and greet. Our last one of the summer. Her life revolves around school and princesses. Since school has been on the back burner these princess events have kept her busy. The owner of the place has a tattoo on his arm that says Make It Happen. As I noticed it yesterday I thought to myself this is going to be the school year that we really need to make it happen. Kelsey will age out in May and transition into another program. It certainly won’t be an easy transition but we will make it happen just as we have with so many other things.

Perhaps it’s coincidental but one year ago Kelsey and I were in NYC on the first trip we ever took together just the two of us. We took the train to see Frozen on Broadway. It was going to be a spectacular trip. After all it was Queen Elsa and Princess Anna related. Soon into our trip however I realized perhaps it was not going to be as spectacular as I thought. It seems that my daughter does not like trains. We only took the train because I thought it would be more relaxing and she could get up and walk around. I was wrong. She hated it. At one point when the train stopped in Connecticut I was tempted to get off , rent a car and go home. I didn’t though. Seeing Frozen on Broadway was just something you don’t give up on. I had to make it happen. And I did.

Finally we made our way to Grand Central Station and to our hotel. There we were able to relax and chill for a while. Kelsey loved looking out the window at all of the people in Times Square far below us. She was mesmerized and actually spent more time looking at that than her iPad.

The play was the next day so we left the hotel early and headed over to the the theater. All was fine with Kelsey until we got there. There were people everywhere and she stood still in her tracks. She grabbed my arm and wanted to go home. No way did we come this far on that train just to stand in the lobby and go home. I was going to make this happen. And I did. I dragged her up the stairs to our seats and listened to her pleas to leave. Finally the lights came down, the music started to play and we were seeing Frozen on Broadway! One year later she still talks about the play and our exciting adventures in NYC. Memories she has because we made it happen. (Not once though has she ever mentioned that train ride).

Yesterday we had one more make it happen moment. Kelsey needs a new mattress and we have been trying to convince her of that. She of course wants nothing to do with anything new. My husband and I went yesterday without her and bought a new mattress. We made it happen. While we were in the store we somehow got into a conversation with the salesman about that other furniture store. You know the one with the two brothers. The salesman told us that one of the brothers, Barry, left the business to pursue a career on Broadway in NYC.

I believe that people come into our lives at certain times for certain reasons. I don’t think we met up with the man with the tattoo by accident. As I said, this school year is going to be a challenging one. Transition is never easy and my daughter is about to make a huge one. If you asked me a few months ago I would have said I feared it, I dreaded it, I didn’t want to face it. Today however, I’m saying we’ll make it happen. I know because I was reminded yesterday by the man with the tattoo on his arm.

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.