Those Moments When Autism Hurts

There are moments through this autism journey that will test a parent’s strength and emotional well being. These moments will also touch upon this spot in our heart that is soft, delicate and extremely fragile that we as autism parents have mended back together time and time again. This part of our heart was initially broken the day we received the diagnosis and through the years we learn to persevere and mend our broken hearts so that we can remain focused and strong for our children. My fragile spot on my heart cracked a bit tonight. As I was brushing Avah’s hair I said excitedly, “only a few weeks left of school and then Summer!” She looked up at me with a smile and said, “Summer Camp?”. As I began to say, “No, not this year” she begins to say, ” Science Camp, make slime?”. She was referring to last Summer her week long camp at MOSI. She finished out the week program but after that week they felt it wasn’t a good fit for her because of some of her behavioral needs. In her mind she had a great time at camp and loved creating things there. If she didn’t, she wouldn’t be asking me a year later. However, they thought differently. At that moment, that spot in my heart began to ache and crack once again. “Damn you autism” but most importantly, “damn you society”. I so badly wish people could see past her autism and the difficulties it brings. I so badly wish people could see Avah the way I see her. Most importantly, I wish people would give Avah and others with disabilities at least a chance! I’m not saying it will be easy, it will be trying at times BUT it is so beyond worth it. Just give them a chance. Work through those challenges and give them an opportunity to at least show you their true self when they are in a understanding environment. So here I am weakened by my hurting heart. The only thing I could think to say is, “Avah, people suck and sometimes they don’t understand”. I’m not sure if she understood where I was going with my comment but It just came out. I kept brushing her hair and changed the subject to her upcoming surfing event. Once again, the spot in my heart is on the mend but will soon be healed and tucked away until the next time autism life rears its ugly head. ~ Adrian

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Letter to the School Board

September 2, 2013

Re: HOST Afterschool Program

Hillsborough County School Board members,

                I am writing you in true disbelief. Disgusted at how my daughter and I were disregarded by staff members at the HOST program at my daughters school, Lewis Elementary. I enrolled her in the HOST program and clearly indicated on the application that she had autism and the best ways for her to communicate or to understand her surroundings. I submitted the paper application a week before school started. That first Friday of the school year we were out of town so I had asked her teacher to turn in the check for the upcoming week ahead so it was paid on time. Fast forward to the Tuesday, August 27^th, after school my daughter began her first day at the HOST program. I knew it would be a challenging day as my daughter has autism and for many individuals with autism it takes a while for them to get use to their surroundings and new people. When I picked her up from school that afternoon approximately 2.5 hours after dismissal, she was sitting quietly at the lunch tables with her shoes off, but in a good mood. I was the told by one of the workers there that my daughter didn’t want to stay with her group, she threw herself to the floor which I had to sign an incident report, and then was handed my application and check back with ‘sorry this isn’t going to work’. The young lady then told me the manager of the Lewis HOST program would give me a call tomorrow to discuss this further. I was never called by the manager (still to this day of writing this letter never received the call). I had to call the district office of the HOST program. After two days of calling and leaving a message, I finally got a supervisor on the phone. Just as I was dismissed at Lewis, I was being dismissed by this supervisor. She said she was made aware of the situation of what happened and that my daughter was a flight risk and danger to others.  I was repeatedly told that when I signed her up I saw the ‘stipulations’ that kids must follow. It was also implied by this supervisor that I didn’t quite do enough to let the HOST program know about my daughter as she kept referring to “weren’t you the parent that had the teacher turn in the application and check for you?” Nothing was achieved by this phone call to this supervisor and I again was left speechless.

  My daughter has been in Hillsborough County schools since the age of three and has never been considered a danger to others. I also find it absolutely mind boggling that if she was such a problem and a danger, why her Step father or I was NEVER called to come pick her up. If any child is ever a huge threat or problem parents are immediately called at school, why not at HOST?

                  I am writing you to inform you of this dismissal and outward display of discrimination of my daughter because of her autism and her differences.  It is discrimination at its purest form. Like I told the Supervisor on the phone, they say they accept student with disabilities in effort to brush away the discriminatory claims that could be made if they didn’t take our kids. However, it is clearly evident they don’t want to accept our kids! It is appalling to me that instead of working with me or her teacher on better ways for her to communicate and follow directions, such as picture schedules and choice boards; they were so quick to just kick her out. It is saddening to me as a parent and a professional who works with autism daily. Children on the spectrum cannot be made to conform in 2 hours on the first day. It takes time for any child to adjust to a schedule especially children with autism.

Those who are employed by HOST and who are at these schools do not have the patience for kids with special needs. They do not have the training or education to help children with different circumstances or different ways of interacting. A district of your size and stature who educates and is in charge of the well-being of thousands of children in the ESE/ASD education system should have better equipped after school programs for kids like my daughter. If you offer programs like HOST for general education students you need to give that same right to children with special needs. You need to offer that same service to parents of special needs. Parents like me who work Full time need somewhere we can trust for our children to go. They should be able to join a program where they are respected and are given an opportunity to have fun after school like the rest of the students. A place that understands their differences and accepts those differences instead of looking at them like pests, much like the HOST program did to my daughter. Sure there are camps and daycares around however like mentioned before you offer this HOST program to mainstream students at a low cost, something similar should be available to your exceptional students and families as well. We shouldn’t have to seek past our district for this service nor pay ridiculous costs to other places. Our kids are just as important!

                  Neither I nor parents like me, ask for our kids to get special treatment, however we do expect them to have the same opportunities that mainstream children have. Parents like me need to work full time, we struggle daily to find a place in this world for our kids. Most parents of special needs are drained emotionally, financially, and desperately need to work. Having no afterschool care that is fit for our kids is a huge inconvenience for us but an even bigger injustice for our kids!

    With this letter I do not wish for my child to get put back in HOST. I feel quite opposite as I do not think she will be treated kindly nor cared for. As it is evident they are incompetent to care for children with special needs.  I wish to see change! I seek an afterschool program created like HOST but for those kids who are different. For the kids that excel best with people who are patient and kind who are willing to accept their difference. Not people who expect children to follow suit on day one and don’t give a child a chance to adjust and adapt to their surroundings before giving them the boot. A thorough look into this HOST program needs to be done. These individuals need to trained and knowledgeable of all the exceptionalities that Hillsborough County teaches every year. The number of children with disabilities, especially autism continues to climb at an alarming rate and a need for a program that accepts our kids is vital. What is even more important is employees who are capable of working with children with different abilities needs to be hired so that no kid is pushed to the way side like they are a nucense, much like my daughter.

                Children with disabilities can thrive and excel if given the chance and compassion to do so. My daughter especially was treated like a second class citizen at this point in time by HOST. It is sickening and disheartening as a parent and I won’t go quietly and sit back idly why this happens to my family and others, district wide. A district that tends to thousands of students like mine should have more opportunities available for our kids because HOST surely isn’t the answer.

I await your response.

Adrian Brooks

Parent

Warning Parents! Comfy Kids Consignment selling broken merchandise

I am all for small businesses! I am a resident in Temple Terrace and have been a loyal customer of Comfy Kids Consignment shop for nearly four years now. I mainly consign and purchase clothes for my children at the shop. However, this Christmas I really wanted to buy my daughter a karaoke machine for Christmas so I was thrilled to see that Comfy Kids had one!

My daughter has autism and music and singing is her favorite thing to do so I thought this Christmas gift would be perfect. I purchased the Karaoke machine on a busy Saturday morning the cashier I hadn’t seen before so I assume she may have been new and there were a few others in line behind me. I wanted to test and open the box right there to make sure everything checked out okay but with the crowd of people and time I took faith in their little ‘Inspected by’ sticker and went on my merry way. I came home and stored it away in a closet along with other gifts I had purchased for my children for Christmas.

So here I am the Friday before Christmas and I decided to get wrapping done. I start pulling out all the gifts to wrap them and something told me to check the Karoke machine out. THANKFULLY I did. If my daughter would have seen what I saw on Christmas morning I think we both would have been in tears and mortified. The machine had a crack on the top corner near the screen, the whole system was cracked open, upon plugging it in the CD player part doesn’t even open! I was astounded at the condition of this thing! I immediately called Comfy Kids and the associate on the phone was nice and took my information and told me to come in Saturday morning and speak with the Manager. The associate also told me that they had another machine for the same price I paid and that she would put that on hold for a possible exchange.  I was at the store shortly after it opened at 10 AM only to be told to come back at 1 when the manager would be in. The cashier mentioned she would try calling the manager on the phone so we could possibly get this settled while I was there. She goes behind the curtain they have and comes back to tell me that the manager has said no refunds or exchanges. The manager hadn’t seen the condition of this machine and I find it disheartening that there in plain view there is another karaoke machine for the same price that could have been easily exchanged. I left a note for the manager explaining my disbelief in this situation and at the time of this writing have still not received a call from her.

I find it sad that customer service has taken a back seat in society. I would expect something like this from huge chain stores that have millions of customers nationally, globally and could care less. However, for a considered ‘small business’ whose loyal customers are local families I find it sad that this is how we are treated for our patronage. I also find it sad that this has happened around Christmas time. Not so much that it is an inconvenience for me to now have to go back out and find another one to purchase and say goodbye to the money I wasted on this machine but it is even more disheartening to me that if I had not checked it and went on my good faith of ‘inspected by’ sticker they place on their merchandise I would have had a young girl disappointed and questioning why Santa would give her something like this! It is sickening and I am a ball of emotions about this.

I wanted to share this story so that other families are well aware and are cautioned to check, inspect, and do what you have to do. I don’t want anyone else treated like this by this store! They have lost a loyal customer and consigner over this and have shown how they truly care about their customers and quality of product they are putting out.

With this post you will see pictures of what I pulled out of the box!

Cracked front

ASD Parents: Make swim lessons a priority!

In less than two weeks, two autistic children have been lost to tragic drowning accidents. A loss of an innocent child is truly a sad occurrence and far too many times here in Florida children’s lives are cut short by drowning. The saddest part is that drownings are preventable. In more ways than one: swimming lessons and tentative care givers. As a mother of two, and one being on the autism spectrum, it hits close to home to hear horrible stories likes this but it is a reality and parents have got to take notice and take action!

One question that crosses my mind is how could this happen? I am not clueless to the fact that accidents happen and children are sneaky little devils, especially autistic children. ASD parents especially have to keep a watchful eye; our kids are quiet but clever! So I understand children get out of a parent’s site, but parents have to be more diligent in their efforts to make sure their children are safe and secure. For children with autism, they are usually drawn to the water because of the sensory calming effect that water can do for them. Other reasons why children with autism are susceptible to danger, such as drowning, are they simply have no fear. They do not grasp and understand the danger that is around them. So it is important for all parents, especially ASD parents to teach their child to swim.

Swim lessons, in my opinion, are a must for children. I know many, like myself, who do not have the funds to pay for private lessons are put between a rock and hard place. But if you can’t afford it, simply teach them yourself. Make visual aids, social stories or other items that will engage your child to want to learn. If you are one of the fortunate ones who can afford swim lessons please get your child in! In my opinion, swim lessons are as vital as taking them to the doctors for shots and check-ups. There are several great private organizations, local rec centers, and even local YMCA’s that offers lessons. At least get your child to learn the basics. It is vital they are at least comfortable with water and know what to do in the event they should fall into a pool or lake. 

I hope I do not hear of another child drowning. However, I know living here in Florida there will be more. Parent’s please take action and some way, somehow teach your children how to swim. So tragedies like this do not happen to your family.