Lobster Macaroni and Cheese

She came through the door with a big grin on her face. I knew right away that she had a story to tell. Some days she comes home and can’t wait to tell me about her day. She can’t wait to tell me her new story. Kelsey is a story keeper. When someone tells her a story she never forgets it.On this particular day her teacher told her a story about a weekend trip and ordering lobster macaroni and cheese at a restaurant. For the life of her Kelsey can not imagine why anyone would put lobster on macaroni and cheese. As she was telling me the story about her teacher’s adventures she kept asking me in disbelief if lobster macaroni and cheese was a real thing. Perhaps one day she won’t question it and tell the story differently. But for now I enjoy hearing it just as she tells it.

Through the years Kelsey has had many people help her along the way. What she remembers most about the people she has interacted with are the stories that they have shared with her. Most people don’t realize the impact that sharing something as simple as a story can have. It’s these stories like the lobster macaroni and cheese that keep my daughter happy and secure.

Not a day goes by that I don’t hear a story that someone has told her. We’ll be in the car or eating dinner and all of a sudden she starts to tell us one of her stories. Some of them are from long ago and I’ve heard over and over again. She never forgets them and hangs on to each and every one.

Stories connect us to one another. My daughter is very fortunate to be connected with so many people in her life. Some of these people she sees every day some not too often anymore. She carries all of their stories with her though and smiles as she tells them. Through the years she has gained much more than just the goals on an IEP.

Realizations At The End Of The Road

Maybe it’s because this is our last rest stop, our last year in public school, or maybe it’s just because I’m now one of those old folks that is so much wiser but this last leg of our journey has made me very aware of how fortunate we are. Perhaps it’s the reminiscing part that is forever running through my head these days but I have realized the great respect I have for the many people that have helped my daughter and us as a family get to the point we are at now.

Often times along the way we felt that it was us against them. At some points we have had to hire an attorney to be on “our side.” I know what it’s like to be an angry parent. Never would I have thought back then that we would be in such the good place we are today. We may not have always agreed but we were always able to compromise and a great deal of respect was made along the way.

In the beginning as a young parent with a newly diagnosed child it’s hard to comprehend why other people don’t feel the same urgency and need for services that you do. It’s incomprehensible that the world doesn’t feel the same way about your child as you do. We get angry at our school district, we get angry at our team, we get angry at the world. You become panic stricken and want everything done now. Starting out on a journey traveling down an unfamiliar road and not knowing where you are going to end up will make you do and say anything that you think will lead you in the right direction. It’s when you learn to work with the people around you that you keep moving forward.

And now as our journey with our daughter is about to take a new turn I’ve realized that even when the times we were in a really bad place or the wrong program we always found a way to make things right. Sometimes we put our trust in people we hardly knew but it’s some of those people that stayed with us through the years that have earned my deepest respect. Today I realize how fortunate we are to have met so many people on this journey that we have so much respect and gratitude for.

Photographs

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.