All That You Are

All that you have become all that you are

took many many years.

Years that were filled with much laughter and tears

and help from a village of people both near and far.

It took you a while to like this place.

I’m sorry for not understanding in the beginning what you were all about.

Today though I can stand up and shout.

It’s happiness we all see on your face.

This journey has been long.

You have amazed us with all that you have accomplished and done.

We never could have imagined you would turn 21.

Through it all you have become very strong.

You have taken us on an unbelievable journey through the years.

Often times we didn’t know if we could go on one more day.

You were the one who always showed us the way.

You proved us wrong with our worries and fears.

It’s been amazing to have watched all that you have become all that you are.

You have made us tired and turned our hair gray.

But with you we would not trade any day.

You have worked so hard to come so far.

You have had your share of days that were extremely bad.

Days we frantically tried to get you through.

If you only knew the many times I’ve cried for you.

You learned to let those days go and instead remember all the good days you’ve had.

You have taken us places we never thought we’d be.

You taught us to look differently with our eyes.

With our ears to hear sounds that many often disguise.

You showed us a different world to see.

We have watched you grow and become who you are.

Somehow all of those missed milestones came into place.

You did it in your own time and pace.

The storm that once was is now in a place that is very far.

All that you have become all that you are fills me with bittersweet delight.

Today you are 21.

Your journey has been incredible and is not nearly done.

I think of the beautiful woman you have become and the tears that fill my eyes I hide from your sight.

Today you are 21 and a shining star.

Happy 21st birthday to you.

It was quite the accomplishment for you to do.

We are so proud of all that you have become all that you are.

About The Test

Although it has been a few years since I received my daughter’s high school standardized test results I still cringe every spring knowing that it is testing season and parents of special needs children are about to be slapped in the face just as I was. I remember receiving the letter in the mail and being very curious of what it said. I knew my child had no chance of passing and I knew that is what the letter would confirm. I was curious however of how they would break the news. What I didn’t know was how seeing my child’s results in black and white would affect me to this day years later.

The letter said my daughter was failing math, English and science. Let me tell you right now, my daughter is NOT a failure. When my daughter left kindergarten she was only able to count to 17. This is far less than what her peers could count to. My daughter’s disabilities however, impede her ability to learn like her peers. By the time she reached tenth grade she was able to add and subtract double digit numbers. This is an example of a question on the tenth grade math exam: Albert drew the line represented by this equation on a coordinate plane. y=-1/2x+5 On the same coordinate plane, Penny drew a line that is perpendicular to Albert’s line and passes through point (-4,3). Which of the following equations represents Penny’s line? A. y=2x+5 B. y=2x+11 C. y=2x-5 D. y=2x-11 There was not one double digit addition or subtraction question on that exam. Well listen up. My daughter spent endless hours with a tutor year after year learning basic math skills. And we spent an endless amount of money on attorney fees to have the school district provide that tutor. You can score her standardized test but let me say this again, my daughter is NOT a failure. Your test has no idea of the amount of time and dedication my child’s teachers spent to ensure my child made progress.

Another thing that makes me angry about the test is the amount of time that teachers and staff have to take out of their schedules to sit one to one with my child during the test. Going into the test we knew she wasn’t going to pass but our state mandates that every child must take the test regardless if they have learning disabilities or not. The test is supposed to ensure that no child is left behind. If your test scores are accurate then, my child has been thrown under the bus. According to you she is failing everything.

My daughter took her first standardized test in third grade. I remember her coming home and being proud of herself for answering all of the questions. She said the answer to question 1 was A…question 2 was B…3 was C…4 was D…5 was A…6 was B… Some years she didn’t take the written test but a portfolio was submitted by her teacher to show the progress she had made. The state mandates that if a child doesn’t take the actual test they must submit a portfolio. Teachers spend hours working on these portfolios. The state however doesn’t grade any of them as passing. Our children don’t have a chance.

Standardized testing should be optional to children on IEP’s. Whether or not to take the test should be a decision made by the IEP team. When my daughter took the test I already knew the best path for her to follow was to receive a certificate of completion and not a diploma when she graduated. She would stay in a post graduation program until she aged out at 22. Passing a standardized test wasn’t important to us. She took the test only because she wanted to be like everyone else. For other children on IEP’s however, passing the test and receiving a diploma is a goal. For a child that is struggling but really wants to pass, the test is a good thing. They can receive extra help and tutoring to help them reach that goal.

Every child should not be made to take the test. Just as my child is on an “individualized education plan” it should be an individual decision to take the test or not. I don’t need the state to decide if my child, who they only know as a name on paper, is failing or not. Success can not be determined from a standardized test score. By the time my daughter was in tenth grade she had accomplished so many things that when she was younger we never thought she would do. Dressing herself, tying her shoes, making a purchase at a store, ordering from a restaurant, being happy. Only other parents of a special needs child can truly understand just how amazing these accomplishments are. My daughter is NOT a failure. She is a huge success.

Special education teachers are overworked, over stressed and under appreciated by the general public. A teacher should not have to spend endless hours preparing every one of their students for the test knowing that for some it will be impossible to pass. A teacher should not have to spend hours putting together portfolios knowing that they will never be passed. A teacher should never be judged or evaluated solely on their student’s test scores. Special needs families understand that there is much more going on in their child’s classroom than just math, English and science lessons. Do not say our children are failing. They are so much more than a test score.

To All The Special Mothers

I am the mother of 3 beautiful children. When I held them in my arms after they were born I understood what unconditional love was. As mothers we all share that common bond. We will always love and protect our children.

One of my children has disabilities. Having a child with disabilities doesn’t make me different than any other mother. It just makes my life different. It means that my worries are different than yours. It means that I won’t be one of those mothers you run into at little league games or hockey practice or band concerts. Instead I will be sitting in waiting rooms waiting for doctors, therapists and social workers. And at night when you are watching your favorite tv shows I’ll be hunched over a computer screen trying to find more information about my child’s disability.

When my daughter was born I had no idea how different our lives were about to become. As the months and years passed I realized that this time I was becoming a mother I never thought I could be. I learned what it really means to become a “mama bear” and stand up for your child. I learned what it means to have to put trust in other people to care for your child. I learned that some people in this world are cruel. I also learned however, that there are people in this world like angels on earth. I learned what a bad day really is. I learned not to dwell on the bad people and the bad days but rather be grateful for all the goodness that having a child with disabilities has brought into our lives. To this day as my child grows I grow as a mother.

I often hear people say it takes a special parent to raise a child with special needs. Why is that so? As different as my child is from yours and as different as my life might be from yours I am still a mother like you. Having a child with disabilities is hard. Some days are unbearable. There is constant worry and a tiredness that never goes away. But that doesn’t matter because just like you I am a mother and just like you I love my child unconditionally. Any mother would do the same. You know it and I know it too.

Happy Mothers Day to you all. We are all special, we are all the same. We all love our children unconditionally.

A Village To Appreciate

To our teachers that have gone above and beyond for my child and to this day are still a part of our family, we appreciate you.

To our speech therapists that have given my child the skills and tools to make each day and each new situation easier, we appreciate you.

To our occupational therapists that have worked endlessly to teach my child so many skills that have made her become much more independent, we appreciate you.

To our physical therapists that provided the encouragement for my child to know she could conquer even the most challenging physical tasks, we appreciate you.

To our adjustment counselors that have spent countless hours with my child showing nothing but patience when she was beyond reasoning, we appreciate you.

To our paras who have worked their way into my child’s heart and have been our unsung heroes, we appreciate you.

To our school staff for always supporting my child and knowing her needs, we appreciate you.

To our van drivers that have greeted my child every morning with a smile and a friendly hello, we appreciate you.

To our doctors and nurses at Children’s Hospital and Tufts Medical Center that have helped us through some frightening times, we appreciate you.

To our friends and coworkers that have stuck with us and have always been there for us, we appreciate you.

To our neighbors that we can always count on, we appreciate you.

To our community, our hairdresser, our dentist, the staff at our favorite restaurant for always making accommodations for my child, we appreciate you.

To our village, I am forever grateful for all that you do each and every day to support my child. Together you transformed my very unhappy and frightened 5 year old daughter who refused to speak into a happy (almost) 21 year old woman who has accomplished so many amazing things, things we never thought were possible. Some of you no longer work with her but you have remained in our village and continue to be a guiding light in our lives. Each and every one of you are truly appreciated.

The Big 21

Think back to your 21st birthday. How did you celebrate it? I celebrated mine away at college and I remember a keg, cigars and lots of friends being involved. Turning 21 was a really big deal.

Have you ever bought a birthday card for someone who is turning 21? Most of them acknowledge the great milestone you have reached and all the things you are legally able to do. Where do I find a card however for my princess obsessed daughter with autism that could care less about her new freedoms? There is not one princess card out there that says happy 21st birthday.

Let’s forget about the card. What about the actual birthday party? Of course she is asking for a princess party with real princesses. There are several companies out there that will arrange your child’s entire birthday party complete with any princess or superhero you want. The problem is they are all designed for children ages 5, 6 and 7. They provide story time, dancing, singing and party games for the birthday child and their friends. There are several packages to choose from and lots of options available. There is no package however for a 21 year old without friends.

Age appropriateness has been a thing in our house for a long time. When your child is young it’s not that noticeable. When they start to grow up and get bigger and taller and more mature looking it starts to get other people’s attention. At home there is no problem with being who you are and doing what you enjoy to do. It’s when you venture outside that it gets a little trickier.

So here we are faced with the birthday party dilemma. We could just pull out the princess themed decorations and blow up a bunch of pink and purple balloons. But this is the big 21. It’s a big deal (maybe not to her, but to us). We just want to make it something special. Most of us remember turning 21. In the years to come we want her to remember too.

The Next Chapter

It’s time. It’s time to start writing the next chapter of the book. It’s called Transitioning into Adulthood. I have watched my daughter transition at other times on this journey but this one is going to be big. All of a sudden things are starting to get real. What we knew would happen some day is happening now. The truth is, I’m not so sure if I’m ready for now. How then am I supposed to get my daughter ready?

There are transitions in our children’s lives that tug at our heartstrings. Their first day of kindergarten, starting high school, high school graduation, turning 16, and then 18, and 21 are a few. These transitions hold true for all parents regardless if your child is typical or not.

Watching your child turn 22 however and transition from public school into adult services is a transition that only special needs parents share. The day your child turns 22 they are no longer eligible to receive special education services provided by their school. It is up to the child’s parents to figure out what their child is going to do that day and every day after.

And that is where we are now. We have taken the steps to get where we are. We have filled out the endless paperwork, the forms, the questionnaires and we have contacted who we needed to. And now we have to take the next step and find a place that is the right fit.

Our search started last week. We visited a program that offered adult day services. The director greeted us at the door and gave us a tour. As we went from room to room I was totally thrown off guard. This was not like the schools and programs that have become our saving grace for the past 16 years. It was not like the place that my daughter has become so used to. I was reminded of trying to find a nursing home for my parents and filled with great sadness. Making big decisions for the people we love the most is a very hard thing to do.

I am sure, however, we will eventually find a place and program that is the right fit. Just as we have made it through so many other transitions along this journey we will make it through this one. It’s taking the steps and walking the unfamiliar road to get there however that keeps me awake at night.

Marathons, Emergency Preparedness, and Kindness

It’s marathon Monday and my daughter woke up to the sound of thunder. She came running out of her room and asked if it was okay. Six years after the Boston marathon bombings she is still on edge about the “bad things” that happened that day. Although she was not in Boston the day of the marathon the fact that it was so close to where we live affected her and still does.

Every year she makes us turn the marathon on tv. It’s not the runners she wants to see but it’s the police officers and police dogs lining the route. She feels safer knowing they are there and every year she claims there are more of them than the year before.This year, six years later, she asked me if they checked all of the backpacks.

The days following the marathon bombing were scary to all of us let alone a child that is already filled with a ton of anxiety. Lucky for us we were not in one of the areas that were told to shelter in place when the police were looking for the men that set off the bombs. Sometimes I wonder how my daughter would have reacted if we were.

This past week our local Sepac held a presentation about emergency preparedness for people with disabilities and touched upon being prepared for times when you are told to shelter in place or evacuate. The speaker made two comments that stood out in my mind. First, he said in an emergency the disabled and the elderly are the two groups with the most fatalities. Second, he said that know one knows how they will react in a real emergency until it actually happens. We were given emergency preparedness kits and advised on things we could do to better ensure the safety of our children with disabilities. What scares me the most however if my child is in an actual emergency and has to run is that she will get separated and lost. That is something that you can’t put in an emergency kit.

With that thought on my mind I used today to talk about some unpleasant things. Things that no one really wants to talk about with their child. I thought it would be a chance to talk about when “bad things” happen. I asked her what she would do if there was an emergency and she had to run and got lost? I asked what she would do at school. I asked what she would do at home. She told me I was scaring her and she didn’t want to talk about it because she would have nightmares. She did say however, if she ever got lost she would call someone. Enough said. I stopped talking about scary things and finished our conversation on a more positive note. We ended with the understanding that “bad things” don’t happen very often. And when they do, as the speaker at the presentation said, good people step up and help.

We also talked about the good things that come out of bad things. Here in Boston there have been many funds set up to help those injured, there have been scholarships set up and charitable donations. We talked about the days following the marathon when her elementary school stepped in and had all of the kids trace their hand and decorate it. The teachers put all of the hands together and made them into paper chains. They delivered them to the hospitals in the area where those injured from the marathon were being treated. The motto was, “Hands helping hands, helping me, helping you.”

One Boston Day was created in Boston after the marathon bombings. It is a day designated as a day of doing simple acts of kindness. In our house we use this day to donate to an orphanage that my daughter likes to follow. Some years we send supplies, other years we send a donation. My daughter makes sure that every donation includes a picture of her hand that she has traced.

The marathon is over. We have made it through another Boston Marathon Monday. What started out as a scary morning filled with thunder and rain turned into a day of counting a years worth of change and making a donation to help children in need. Kindness, a lesson my daughter learned six years ago. Kindness, one of the best lessons she could ever learn.