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
Today marks a whole year that I have been with CARD (Center for Autism & Related Disabilities). When I got the opportunity I was thrilled to do the work that I enjoy for a cause that I’m so passionate about. I truly feel that Avah’s diagnosis and having to become a ‘warrior mother’ has given me purpose in this life. Has opened my eyes and heart to help people in general but mostly a deep desire to work with and help families and parents like me. When I got the opportunity to begin working at CARD I was so excited and thought this will be amazing. Boy was I right. This past year has flown but never fell short of amazing.
Most importantly the friendships that have been created this past year, I am beyond grateful for. Each and every one of my coworkers are hard working and passionate individuals wanting to help families and assist individuals on the autism spectrum overcome their challenges. It is amazing to see each and every day the work they put in for families and young adults here in our Learning Academy. I am in awe of my co-worker’s perseverance and over abundance of joy they get from helping people and celebrate with the families for each milestone or hurdle the individuals overcomes. I have built relationships with other warrior mothers that are on staff and our constituency board members. Being able to share stories and learn from mothers who have already traveled the path Avah and I are on is an honor. Being able to see their beautiful daughters who are grown and doing amazing things helps give me hope for Avah’s future. These women have become a huge part of my life and know the struggles I face and no how to lend a hand and kind words anyway possible.
We work hard. We are dedicated here at CARD but we do have fun. Laughter can be heard bellowing down the halls. Our lunchtime together is always like a comedy show. Everyone clicks. We all have our place here to do the very best for individuals and their families who face many struggles daily.
I am so thankful for the opportunity to come here to work each and every day. Most importantly, it feels great to know I am exactly where I am suppose to be. Here’s to many more years ahead.
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 27th, 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.
Hillsborough County public schools began Tuesday August 21st. After a month long summer battle with the CHOICE office pleading with them to let Avah remain at Pizzo Elementary, I was drained by the first day and honestly dreading it. Due to the ESE/ASD rezoning for elementary schools Avah was now going to attend Lewis’ new ESE unit. I was worried and scared for Avah as change can be troublesome for a child, especially a child with autism. Coming from a school that she attended for 4 years and feeling like a family, to now being faced with a whole new school, unit, and teachers I was beside myself. Again, worrying about how Avah would fare through this change. I was reeling from the injustice of being basically dismissed by the CHOICE office all summer which in my opinion, should not be called CHOICE, because we as parents still really have NO CHOICE! Working so hard to donate so much money to Pizzo’s program and living basically on the line of both Pizzo and Lewis’ zones, I was literally fuming with frustration and was seeing red. Blinded by my frustration I didn’t want to embrace change. I didn’t really give everyone a chance right off the bat. Though I kept telling myself, “this unit is new Adrian just give it time”, my heart and strong-willed mama bear persona went on overdrive and prohibited me from giving the school a chance.
The first day of school, after dropping her off I emailed everyone within the ESE department of the Hillsborough County Public schools. I got a response from some within the ESE program and even received a phone call from the newly elected Hillsborough County Board member, Cindy Stuart. She was gracious in listening to my dilemma and pointing me in the right direction. The principal of Lewis’ and the ESE director at Lewis’ called me to hear my concerns and issues and were both equally as gracious. It wasn’t until the teacher’s at Pizzo called me to talk about the week and my frustrations. They listened to my arguments as I cried and made me realize something about myself.
After talking to them I realized that I wasn’t giving Avah enough credit. It is hard on parents to ‘let go’ and to just ‘wait and see’ how things will transpire with our kids. It is even more daunting when our kids with autism can’t say, ’Hey mom, I’m okay.’ Most ASD parents don’t receive that verbal stamp of approval to put our worries at ease. So naturally, we go on auto-protection mode and fight for what we feel is best for our kids because frankly, we don’t know how else to do it. However, with that ‘warrior mother’ attitude, I didn’t give myself the opportunity to step back and see how Avah was adjusting. I was too focused and adamant on getting her back to Pizzo. However, when I got off the phone with Avah’s previous teachers, I felt released of the burden of continued fighting and the urge to stop and reflect on how Avah was doing after this week.
Looking back on the first week, she was eager to go every morning. She was happy when she came home. She even grabbed her backpack and was ready to go Saturday morning. Watching her in the classroom, sitting at her ‘big girl desk’, I realized she was fine! I was so proud of her and quite frankly disappointed in myself. It was me who was affected most by this change, not her. I truly didn’t give her enough credit. So with that ‘ah ha’ moment I was able to finally let go and let Avah continue to teach me. She showed me in her own special way that though she has autism, she still is a strong, independent girl just like her mom. I can live and breathe a bit easier knowing that very fact.
Below is Avah on her first day of 2nd grade.
Many children, autistic or not, have those moments of screaming, crying outbursts. Tantrums are not fun for any parent, especially when one of these melt downs happen in a social setting or public place. What makes an autistic tantrum that much worse is the child’s inability to verbalize what is wrong and what can be done to fix the problem. For many autism parents, like me, through the years we pick up on things or scenarios that may provoke one of these nasty tantrums to arise, so we try our best to prepare ourselves and children. Even more preferably avoid them all together. However, there are times that we cannot avoid them from happening and must endure the wrath. My daughter, Avah, is famous for the high-pitched blood-curdling screams. It literally makes your heart stop for a second. She like others on the spectrum also has tantrums that may involve throwing themselves on the floor and then stiffening their body making it virtually impossible to pick them up. Some outburst may also include kicking, screaming, biting and self-injury like behavior. No matter how many times we see the ugliness of tantrums what makes it even worse is having all eyes on you wherever you are. Feeling like an animal at the zoo with onlookers staring, as a parent you can’t help but wonder what the people are saying to themselves. It makes me want to throw my own tantrum and yell, “She’s autistic” and storm off.
Now I know the saying, “you shouldn’t care what others think” but let’s be honest. As people, in our society, we do! Parents do not want to be judged on something that is not within our control. We do not want to be seen as a bad parent or our children considered brats. For me, and I think autism parents would agree, our children’s tantrums are misunderstood. What I mean by that is autism isn’t easily spotted. Unless you really know the child or know what some of the autistic behaviors are there is no way of telling them apart from a neuro-typical child. So to the unknown eye staring at us and our kids rolling around on the ground, they seem to be your average, misbehaving children who need discipline. Maybe sometimes that is true because they are still children however, most of the time children with autism are screaming and lashing out because of sensory issues. It could be too loud, too bright/dark, or too crowded. They may not like the song, movie, or TV channel choice. The different smells in the food court at a mall or someone around them wearing too much perfume or colgone bothers them. Something that seems small and trivial to us, is huge and overly-stimulating to them. Any of these sensory issues or change in daily routine could ignite a tantrum at any moment. So the next time you see a child having a melt-down remember this post. I ask before you cast judgment that you try to remember there may be more than meets the eye. The child may not be screaming and causing a scene to be defiant they may be autistic trying to communicate the only way they know how.
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.