April 2 is World Autism Awareness Day. I asked my friends to tell me what Autism is and they came up with a great list. A list of many wonderful things that inspired me to write this poem. Thank you for understanding, accepting and spreading awareness. The journey is long but it is people like you that makes it amazing.
Autism is an amazing journey and that is true. In today’s world it is a journey for quite a few. People on the spectrum are an amazing bunch they really are. From mild to severe they have the potential to go really far. Children of God living a different childhood. Autism is often misunderstood. To make some people unique it was part of God’s plan. They would become some of our favorite people and help us become a better woman and man. They teach us to see the world in a different way. Every minute of every day. Autism is a 3 dimensional puzzle, a mystery waiting to be solved. Because of this World Autism Day has evolved. A puzzle that is loved, our normal everyday. Beautiful in every way. Some think the vaccines cause it, I think not. This is a misconception that will long be fought. Autism is not a disease but a journey. A journey that will last until eternity. Autism is a journey that is long and hard. It leaves parents and caregivers scarred. But through it all there is a child. A child that is loved regardless if they are mild or wild. A child that teaches us so many amazing things along the way. A child that introduces us to a village of people that help us each and every day. Autism is many things. It is amazing and beautiful. We are better people for understanding all the gifts it brings.
This past week has given me hope. This country of ours that always seems to be terribly divided these days united and came together to save Special Olympics. It might not seem like it but there are a lot of people out there that support and will stand up for disability rights.
But then why am I still angry Betsy? I’m angry because you and your administration have shown us over and over again your lack of concern and support for for the disabled. Just the thought of slashing Special Olympics is a disgrace. This isn’t the first year you’ve tried, it seems to have become a pattern. This just happens to be the first time you were recorded testifying at a House Appropriations Subcommittee meeting and we were able to see the true facts for ourselves. What’s even more disgraceful Betsy is that your boss all of a sudden acts surprised that you were eliminating Special Olympics funds.
Betsy I’m angry about the rest of your budget. You are asking to cut supported employment, a program that connects disabled people with jobs, by 22.5 million. You are asking for a 7.5 million cut to the National Institute for the Deaf. You are asking for a 13 million cut for Gallaudet University, a government funded university for the deaf. You are asking for a 5 million cut to the American Printing House for the blind, a federal program that produces books for blind students.
At the same time that you are decreasing funds for these programs you are increasing funds for charter schools which just so happens to be your own pet project. You are asking to add 60 million to the Charter Schools Program, a program which creates and funds charter schools.
Our children with disabilities and special needs are going to be significantly impacted by this. Public schools have laws, guidelines and protocols that they must follow to ensure children with disabilities are protected and able to access the curriculum. Your charter schools Betsy are not obligated to abide by these laws. Why would I send my child there? Hey Betsy do you realize your charter schools won’t have children with special needs enrolled? They will be forced to stay in the public schools that you are syphoning money from to put into “your schools”. And here Betsy is where your bigotry and lack of empathy come shining through. Your plan all along has been to keep disabled children out of your schools. Well Betsy let me just say that my children are better adults today for having gone through public schools that enrolled all of “God’s children” regardless of their abilities, race, religion, and economic status.
Betsy you say these were difficult decisions. Let a parent of a disabled child tell you what real difficult decisions are. You have no idea and never will. These cuts to your budget are just one more insult to the people of this country. You are putting even more hardship on the most vulnerable.
This past week people from the United States and all over the world stood up to you and your administration and said they believed in the Special Olympics. “Special Olympics strives to create a better world by fostering the acceptance and inclusion of all people.”Really Betsy I am angry, very angry. At a time when more and more people across our country are seeing the benefits of including and accepting people with disabilities you are turning your nose up and making some really bad decisions.
Really Betsy? Did you really put a lot of thought into this? Was it really a difficult decision for you? Here’s the thing, your proposal to eliminate funding for Special Olympics puts this country that you love so dearly at an all time low. When asked how many children this difficult decision was going to affect, you didn’t even know. Really Betsy?
In case you are wondering, last year nearly 3 million children participated in Special Olympics unified schools and another 300,000 participated in unified sports. And Betsy when you were making this difficult decision did you consider that this not only affects the athletes but it also affects their coaches, volunteers, mothers, fathers, sisters, brothers, grandmothers, grandfathers, aunts, uncles, friends and neighbors. I’m not sure if you realize this Betsy but Special Olympics is not just about the athletes. It’s about communities uniting together to support some of the most amazing people you will ever meet. And hey Betsy if you think eliminating the funding for Special Olympics is going to help make America great again you are dead wrong. Special Olympics IS what makes our country great.
I understand that there has to be cuts to the budget somewhere. But really Betsy? Special Olympics? I would like to know why you chose Special Olympics over something else. Perhaps you could try skimming some funds from, do I dare say, charter schools. Oh I know charter schools are important too. How great America will be when every parent has a choice of where to send their child to school. Really Betsy? Do you think we are that naive?
That word choice doesn’t come up too often when you are the parent of a child with disabilities. And that Betsy is why Special Olympics is such an integral part of the special needs community. There is no need for choice, every child is welcome. And hey Betsy America and this world become a better place when everyone is included.
I have witnessed firsthand the impact Special Olympics has had on the lives of many children. They become true athletes and win or lose they gain a better sense of self worth and pride. Words can not describe what it’s like to watch the athletes receive their medals. They are accepted, appreciated and included and they know it. The sense of community and inclusion is felt by all who attend the games.
But really Betsy? Special Olympics? I understand that you are a donor and had to make a difficult decision. Perhaps however the next time you have to make a difficult decision you will think it through a little more. And perhaps instead of donating your money next time you will volunteer your time and get to actually know the people you are making these difficult decisions about. And hey Betsy you probably will never understand this but you could never give me enough of your money to buy one of my child’s medals. Believe it or not, money can’t buy everything. Really Betsy.
It has been a very busy week. I went to a transition fair and a few nights later an Autism gala. The transition fair was not something I was looking forward to. In all honesty I would have preferred to stay home. Since my daughter will be turning 22 next year and aging out of the system I knew I had to go. This is a new place for us and I have many questions. As an advocate for my daughter it was my obligation to get up off of my couch and go.
The thought of helping my daughter transition into adult services scares the heck out of me. I went into the fair rather terrified. I did my job however and went from table to table and asked my questions. What I found out is that it’s not as terrifying as I thought. The more I educate myself the more assured I am of what the future holds for my daughter. This journey is bringing us to an unfamiliar place but when we get there we will be prepared as we can be.
The same holds true when your child is first diagnosed with a disability. You educate yourself and learn as much as you can. The more you know about your child’s disability and how to navigate your way through the special education system the better off he or she will be. It’s time to turn off Netflix and start reading everything you can. Get up off of the couch and learn about the disability, the programs available to your child and what to expect at IEP meetings.
With the transition fair behind me it was time to look forward to the gala. The Autism gala has become a yearly tradition for us. It’s a much needed night to let loose but it’s also a time of reflection. From one year to the next I look out into the crowd of people and think about all of the things my daughter has accomplished in the past year and the village of people we have relied on to keep us moving forward. This past year has been a good one and the accomplishments have been many.
As I stood there gazing at the crowd however, my mind wandered ahead to next year. My daughter will have just a few months left before she will make the big transition. I’m sure I will have much to reflect on. I might not know what the accomplishments will be but I do know we will be well prepared and we will have our village f people with us.
Let’s be honest, helping your kid get into college is nothing new. The rich and famous have been doing it for years and making large donations to colleges. Many of us that aren’t rich and famous do it too. We hire tutors, we send our kids to special SAT classes, we have their admissions essays read over. What about the parents that can’t afford the tutors and classes? Is that fair?
This latest college admission scandal that we have all heard about this week is different though because of the way it was done. Parents spent a great deal of money to have their children diagnosed with a learning disability so they could use extra accommodations to take the SATs. To a parent that has a child that actually has a learning disability this is like a slap in the face. To a parent that has spent years taking their child to doctors to be tested and retested and filled out endless questionnaires and checklists this is like a slap in the face. To a parent that has spent years worrying about their child with a learning disability and making sure they had the right accommodations this is like a slap in the face.
The parents involved in this scam should be ashamed. They have no idea what it’s like to have a child with processing deficits, ADHD, dyslexia, dysgraphia, Dyscalculia or other learning disabilities. They have no idea of the effort these parents have gone through to make sure their child is receiving the accommodations they are entitled to.
Shame on the cheaters. I hope they are made to do many community service hours helping children with actual learning disabilities. Let them meet these kids, their parents, their teachers. Let them walk in their shoes.
March 26 is International Purple Day. Purple Day is dedicated to increasing awareness about epilepsy. People in countries around the world are invited to wear purple to help spread awareness. Why purple? Seizures are usually caused by abnormal electrical impulses in the brain and an approach to treat them is to relax the brain and nervous system. Lavender,which is the color purple,is known to have a relaxing effect on people.
My daughter has autism, anxiety, attention deficit disorder and epilepsy. If I could take away any of these disabilities it would be epilepsy. Epilepsy is devastating. I remember each and every seizure she has had and there have been many. There is no indication of when and where one might happen. As a mother it is very hard to send your child off every morning not knowing if they will have a seizure. The scariest part is wondering if people will know what to do when one does happen.
There are different types of seizures. They range from repetitive movements such as blinking your eyes or smacking your lips to losing consciousness and falling to the ground. My daughter has grand mal seizures. This means she falls to the ground, her eyes go off to the side and her body makes jerking movements. To anyone that has never seen someone having a seizure before it is very frightening to watch. To us, it is second nature. When she has a seizure we automatically go into seizure mode and know what to do. We are fortunate however that her seizures have become very controlled and don’t happen too often anymore.
It has been nearly a year since her last seizure. We were in line at the zoo waiting to see her favorite Disney princesses, Elsa and Anna. Without any warning she fell to the ground and had a seizure. She doesn’t remember anything. I remember a bunch of people pulling out their phones to call 911 and a very kind man in front of us took off his coat and put it under her head so she wasn’t laying in the dirt. He stayed there with us until she came to and was able to sit up. After she had come out of the seizure the staff at the zoo had Elsa and Anna come over to her. It was definitely not how we had envisioned meeting them that day.
After she has a seizure we all get a little depressed. She has a massive headache and is very tired. It is so hard to watch your child laying in bed knowing that they are in a lot of pain. I can’t imagine what it’s like for a parent when their child has seizures everyday, sometimes several a day. The stress must be unbearable.
So what do you do if you witness someone having a seizure? If they are having a seizure that doesn’t cause them to fall, stay with them until it is over and make sure they are safe. These seizures usually only last 15 to 20 seconds. If someone is having a seizure that causes them to lose consciousness, make sure the area is clear of anything that could hurt them and try and roll them on their side if they are on the ground. Next loosen any tight fitting clothing near their neck. It is very important not to put anything in their mouth. If the person doesn’t come to after a few minutes and starts to turn blue call 911.
There are 3.4 million people nationwide that have epilepsy. It is devastating to live with and devastating to watch. Wear something purple on March 26 to help bring awareness to epilepsy and those living everyday with the uncertainty of not knowing when their next seizure will be. Take a few minutes to learn about seizures and how you can help in an emergency.
It just dawned on me that my daughter now uses a fork when she eats. I’m not exactly sure how long this has been happening but I noticed it the other day while I was watching her eat dinner. This is a big thing. For years and years she would hold her fork in one hand and use her other hand to pick up her food and eat. For years and years not a dinner would go by that one of us didn’t say, “Use your fork.” We tried working on it when she was younger but nothing ever seemed to help. I think finally we just gave up.
So how did this happen all of a sudden? It certainly wasn’t us. I’m going to go with my gut on this one and give the credit to the program she is currently in at school. I chalk it up to the fact that they are always eating together either out in the community or in their “practice apartment” at school. Maybe she sees her peers using a fork. Perhaps she would rather use her hand but knows it’s “inappropriate”. Maybe she just got so used to using her fork at school she now uses it at home. Whatever the case is we’ll take it.
To most people it might not seem like something to celebrate but using a fork is a really big deal. And that’s why we know she is in the right program. These “big deal” things are happening. Things like rinsing her dish off in the sink and folding her clothes are happening more and more at home. These moments come unexpectedly and catch us off guard. We stop what we are doing and watch her. She doesn’t even realize that she is doing them, she just does them. Sometimes you don’t realize how far your child has come until you start noticing all of the little things that they have accomplished.
Finding the right program for your child will leave you awake at night wondering if you made the right decision. But when the program is right you know it. When the program is right all of those trivial little things like using a fork start to happen. Your child might not be writing essays or doing algebra but if they are learning and mastering skills specific to their needs the program is right.
There have been times when my daughter was in a wrong program. Those days were hell on earth. Only a parent that has been through it can understand it. Its those wrong placements however that make you more determined to make sure your child is in the right place. I have learned to work hard with my daughter’s teachers to make sure she is making progress and that there is constant communication between us. If your school is not communicating with you perhaps you should look more closely into your child’s program.
We are fortunate that my daughter is in the right placement for the moment.This eating with a fork lets us know. Eating with a fork at home wasn’t even a goal we were working on. I credit it to being in the right program at the right time. It’s doing the same mundane little tasks that often go unnoticed every day that eventually turn into big things. It takes a long time and a tremendous amount of patience for things to start to happen especially at home. When the program is right however, the consistency, expectations, and whole team effort, day after day, month after month, year after year reap results.