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.

The Thoughts In My Head

She turned 21 and my whole world changed. I started writing this blog in the hope of spreading awareness of what it’s like to raise a child with special needs. I try to be open and honest about our family’s journey.

Each and every family has their own journey, hardships, triumphs, good days and bad days. But we all share a common bond that no one else can truly understand. It is the understanding of “our village”. The people in our village don’t even understand the impact they have on our lives. We rely on our village at different times along our way.

I’m convincing myself nowadays that I can continue on this journey knowing that our village is with us. Again, I’m just being really honest here and apologize for the ramblings. But listen up village, we are going to need you. This next year is going to be ever so hard. It’s going to be the year of transition. A big transition. Our kids transition from pre k to kindergarten, kindergarten to middle school, middle school to high school and high school to aging out. Each and every transition is hard but this one is going to be the hardest damn one our family has ever done. I know we will get through it just like all of the other families before us but this one scares the heck out of me.

In the meantime my head is filled with random thoughts each and every day…So I once had this little girl that I didn’t know what to do with…Between the meltdowns and seizures it really was hell on earth…And now we have this beautiful young woman who has come so very far…I cry almost everyday…We are in a really good place these days…I hear her singing to herself in her room every morning waiting for the van to come and take her to her “happy place”…The program is a perfect match…It’s going to be hard to replace…Her time is running out…22 is a scary number…It’s going to be hard on her…It’s a time of lasts for everything…The last summer program…The last first day back to school…The last IEP meeting…Never would have thought that would be a sad thing…The last school vacation weeks…I need to refocus…It will all work out…I know it will…We have our village with us…Come on thoughts in my head it’s time to stop.

The year ahead will come and go, all the “last times” will pass us by and all the thoughts will go away. We’ll transition and continue on. In the meantime however my head is filled.

Thinking Back

My daughter just turned 21 and all of a sudden I’ve become very reflective. Next year at this time she will have aged out of the system and no longer be in school. Today my mind is wondering off thinking about all of the IEP’s we have signed (and not signed) through the years. When my daughter was young and we were just starting out on this journey I honestly didn’t understand just how vital my role as a parent in the IEP process was. I would go to the meetings and listen to the reports and proposed goals from “the team”. When it would be my turn to speak I would mention all of the things my daughter was not yet doing and then the meeting would end and everyone would leave. The IEP would come in the mail, I would sign it and file it away until the next IEP meeting.

Sometimes my daughter would meet her goals, sometimes she wouldn’t. Then one day it dawned on me that if I became an equal member of my daughter’s IEP team she would have a better chance of reaching her goals. I needed to step up to the plate and become much more involved than just signing the IEP. School staff are not miracle workers ( but some of them do come close to it) and they alone can’t make every child reach their IEP goals. I, as the parent on that team, needed to be aware of the goals my child was working on and help them work on them at home. Just because my child is on an IEP doesn’t give me a free pass in helping them succeed. We help our typical children with their homework and the same should be true for our children on an IEP.

If a goal on your child’s IEP is that they will learn to zipper their coat then it should be the parent’s obligation to work on it at home. If a goal is that they will learn to write their name you should be giving them opportunities to practice at home. If another goal is that your child will learn sight words you should be exposing them to your child at home. I understand that home is not school. At home there is laundry to do, toilets to be cleaned, dinners to make, meltdowns and unexpected disasters to deal with. If the goals on your child’s IEP are really important to you however, they need to be worked on at home. You don’t need to sit your child at a desk for hours and drill things into them. Take some extra time to teach your child how to zipper their coat when you are going out. Have them practice writing their name with a new set of markers. Put up some of those sight words around your house. Ask your child’s teachers and therapists for suggestions. Find out how your child is being taught at school and how they suggest you do things at home.

There have been times on this journey when I have been more involved than others with my daughter’s IEP. That is just how life happens. As a parent of a child on an IEP you can’t be 100% devoted to it 100% of the time. Looking back now however, what I realize is that the times when I was more involved my daughter did better. When I became an active member of my daughter’s IEP team her IEP’s became more individualized with more meaningful goals that were usually met.

Summer is quickly upon us and the school year will be over. That however doesn’t mean that your child’s IEP and goals should go away. Summer is a great time to work with your child on their IEP goals. Get creative and make it fun. Have them practice writing their name in the sand. Let them practice getting dressed in the morning. Blow bubbles and see how many you can count. Be aware of the goals in your child’s IEP and sneak them into their summer activities.

I know firsthand that you as a parent are cringing at the thought of summer vacation. It only takes a few days until you realize that it is going to take every ounce of patience in your body to survive. Your only mission is to make it from one day to the next let alone be thinking about IEP goals. Trust me when I do say however that the more I was actively involved the better my child did. Take a deep breath and know you can do this. Be strong and at the end of the day whether it takes a margarita or a cup of hot tea so be it.

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.