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
So I know some people, (*cough*) my family in particular, will be the first to respond to this post with, “What do you mean, now what?” or “Already getting bored with no school?”. So let me just say NO! To both questions. I am not getting bored. And for those who are asking if I am going to grad school, the answer is also no! So far I am enjoying my ‘freedom’ of coming home and being a productive member of the household.
What I mean by the title of ‘Now what?’ is simply this. You work so hard for this degree; for this piece of paper that essentially says, ‘Yay me I survived countless all nighters, mastered APA writing standards and a time management ninja” but what now? I’m an ‘older’ graduate already working full time and providing for a family. I just don’t feel as though I am ‘ready to take on the world’ like a young graduate might feel. Hell I’ve taken on and lived in the real world already (Ps. it isn’t fun).
I guess I’m at a cross road now with my degree. It is harder to chase your dreams and go after these career goals when you have a family to think about and provide for. However, you feel like your selling yourself short by staying put and not utilizing your degree the way you want and exploring your passion.
What are your thoughts? Did you feel this way when you graduated? I’d love to know or maybe I’m just the only one who feels this way.
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.
Life becomes busy at times. We often find ourselves consumed by what life throws our way. For me with work, kids, home, and school; it gets hard for me to stop and ‘smell the roses’. To stop and truly take in what I have, what I’ve accomplished and be grateful for my life. So I wanted to take a quick moment and reflect on all that I am thankful for.
I’m thankful for my family.
I’m thankful for my children.
I’m thankful for my boyfriend.
I’m thankful for my friends.
I’m thankful for my job and coworkers.
I’m thankful for our new place and being more financially stable.
2013 has been a good year for me and my family and for that…I am thankful.
I hope you all have an amazing holiday weekend with your family and loved ones. Enjoy the down time and the holiday season.
Until next time,
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.
Oh my poor little blog. I have neglected you but like some say, ‘life happens’. I’ve been so busy with everything on my plate it was hard to find the time to write anything down. On my last blog post I was ringing in the new year excited and ready to take on 2013. As I sit here now two things come to mind. One, ‘my god this year is flying by’. Second, that excitement I had at the turn of the year wasn’t a false hope.
2013 so far has been good. These past few months have been busy for me. I’m settling in to my new position at CARD quite nicely. I absolutely adore my co workers and learn so much from each and every one of them. I’ve been busy just trying to ‘learn the ropes’ and find my stride with working full-time again. In the midst of my adjustment to working full-time was my school load. Still chugging along working toward that overall goal of FINALLY getting my college education. It has been one long road to getting there, a path I’m still traveling down however, the light at the end of the tunnel is starting to become noticeable. 15 more classes! I’m registered for 3 this Summer and 3 this Fall so that will leave me with 9 (OMG) single digits!
These past few months with all my personal adjustments to working and school and trying to find a balance I regretfully feel like I’ve slacked in one important area of my life. That is home. No one is perfect but I at times feel like I could be a better mom, a better girlfriend. Some would say my work ethic and drive is a good thing. Some would say it is a curse. Because with those two qualities of being driven and a perfectionist, you develop tunnel vision. I have my eyes set on one thing and everything can be crumbling down around me and I wouldn’t notice. I often have to be knocked back to reality that I in fact can’t do it all. I am not Superwoman or made of steel. I do require sleep, food, and the occasional what is that called, ah yes break. However, my dreams and goals sometimes get the best of me and I jump into things with both feet only to find myself immersed with no way out. I wear myself down way to thin only giving myself enough time to get to the surface, breathe a bit and then back to the same old. As I get older, i’m realizing that I can’t keep this up.
Thankfully my trip to the surface to breathe a little is coming in a few short days when our little family will be taking a vacation to Disney! I’m so excited. Ayden’s first time. Rich and I’s first time to Animal Kingdom and Hollywood Studios. Avah’s been numerous times to all the parks but not with us so it will be great. For 4 days I plan to leave my phone off. Away from the outside world and social media (if you know me that’s huge!!!). I want to just stop and enjoy my family before we are back at the rat race called life. It will be nice to get away, just us four. I can’t wait!
I promise to write more….Forgot how therapeutic it can be
Until next time!
As I look back on 2012 it was an ok year the best part is the world didn’t end so suck on that Mayans and theorists. There were some high points and some low points but for the most part it was a good year. I look forward to the New Year and what 2013 will bring to my family and friends.
2012 started on a low for me and my family as we lost my Great-Grandmother. She is missed but the great thing is she left us all with so many great memories and so many ‘Hazel moments’ that we will never fall short of having something to laugh about.
2012 was a good year for me academically I graduated from HCC and went on to USF to continue on with my education. I am currently working towards my Bachelors in Communications and my first semester there I did well. I am enjoying being a Bull and I love being part of USF. This past fall, I became active in the Autism Speaks U chapter and became the Secretary of the organization. Now heading into the spring semester and into 2013 I am Co-President of the organization alongside Georgette, a new friend of mine.
I also had a great internship this year with the Greater Temple Terrace Chamber of Commerce which I am thankful for the opportunity. I met many great people from my few months of internship. I am especially thankful for the friendship that I gained from it. Lauren and I have become great friends with LOTS in common: USF, Communication major, social media, and we love wine. We have a lot of fun and I’m sure it will continue into 2013 and beyond.
Avah is doing great in school and her speech gets better and better each day! She is starting to lose all her baby teeth, she is getting so big and becoming a big girl. I know 2013 she will continue on with her great strides and grow even more. I am so proud of her! Ayden my little whirlwind is my social butterfly. He has so much energy and loves life! I can’t wait for him to start ‘school’ this coming year and see him develope even more. I love watching the both of them play. He has helped Avah so much and though she doesn’t interact much with her peers her love and fondness of her brother is undeniable. ❤
October 20, 2012 was supposed to be Rich and I’s wedding but we had to make the decision to put it on hold. I know one day it will happen in due time. So for what would have been our wedding weekend we went on a fabulous weekend getaway to Orlando and had a great time. We try to at least have one getaway a year and for some reason, so far, it’s always been Orlando. Maybe 2013 will take us somewhere different?
In December of this year I went back to work full -time for the first time in nearly two years. I always said that if I was going to go back full time it would have to an amazing opportunity. I was given that amazing opportunity I was waiting for! I began working at USF on December 3rd as the Program Assistant for the Center for Autism and Related Disabilities. In the past, I have helped guide families to resources and what to do next after the initial diagnosis of autism and I love helping families because I remember being in their shoes not too long ago, so being in this position to help and being surrounded by others in an office that has the same love and passion to help families and individuals with ASD is such an awesome experience. I am ready to learn and grow with this position in 2013.
2013 is going to be great! There are so many great things happening this year! My best friend Brea is set to give birth to a baby soon and hopefully for her sake REAL soon. My other best friend Melodee is set to get married March 9th. She has waited for this day for so long and it’s finally happening. I couldn’t be happier for her and am proud to stand beside her on her big day. I am also extremely excited to be an aunt! My brother and his girlfriend Jessica will be welcoming the newest member to our family in June and I am so excited for them and can’t wait to meet my niece or nephew. My cousin Gabe is graduating high school and will be attending the University of Tampa next Fall. It is crazy how time flies as I remember watching him as a baby and now he is young man! We also have a big birthday to celebrate as Rich will be the big 3-0! (He’s not going to be happy I shared that lol). My babies will be 8 and 3 this year. I can’t believe it. I do believe 2013 will be a great year!
There are so many things great things happening all around me. Looking at my calendar of events and to do’s already makes me tired but it will be worth it. I have a great loving family, my children are happy and healthy, and 2013 will bring many great things our way. I wish everyone a Happy and Prosperous New Year! Stay safe tonight!
Goodbye 2012 and hello 2013!