How the System Failed my Family

I'm going to take a moment to talk to you personally. I don't do this much, most of our articles are very educational in nature, but I need a break from research. I just want to be human right along with you if that's ok.

Over the last few months I've been coping with the reality that no one out there wants to help us. What do I mean by that? Well it all started with the public school system. Aiden was involved with a government program here called Early Steps. Part of the services Early Steps offers is called transition. In transition they set up a IEP meeting with your local school system to determine if your child qualifies for services through the public school system. The school system representatives informed us that Aiden does not qualify for an IEP based on his intelligence. They, in all their wisdom, made the determination that there is not an "educational" need for Aiden to receive these services. Now, the school system will gladly accept the medical diagnosis to get the addition money the receive from the government, but they will not give my child the protective contract he needs to ensure a successful educational career. You didn't know that the schools are paid for "special needs" kids? Yep, they surely are. The McKay Scholarship, here in Florida, takes that money away when the school fails your child. The school did say he should have a 504 plan. Which is a step down from the IEP and its not binding. I informed them of his sensory struggles, but that didn't seem to matter.

We then went and filed our tax return. I found out that amount of money we had paid out of pocket for doctors and therapy expenses did not meet the threshold necessary, according to tax code, for a credit. I was floored. We had been paying so much money, but it wasn't enough.

After that we attempted to secure secondary insurance for Aiden through Florida Kid Care. We have primary health care through our employer, but you have the ability to secure secondary insurance through another agency. One of the things Kid Care advertised that they offer is secondary insurance through Medicaid. However after Aiden was denied coverage through Kid Care (because he has insurance) we were told Kid Care does not actually forward applications to Medicaid. So my brainiac question was why does it say you represent them on your website? They informed me that their website does not advertise that information. A lie. You can go to their about section and see the information for yourself.

After our let down with Kid Care we reached out to the SSI department. We applied and went into the meeting. First of all allow me to explain a few things, to be fair. My husband and I are both employed. He is full time and I am part time. Now you'd say why aren't you full time? The answer is simple, we cannot afford daycare for our kids. Part time day care costs the equivalent of our mortgage payments, monthly. There is no possible way for us to swing that and it won't cover weekend work hours. That is why I am part time, but I easily put in about 30 hours a week at work, while I am there. So with that explanation in place, my husband and I were only coming out ahead about $200 a month, at best. Aiden's medical bills cost us about $500 a month with insurance. When we went for our SSI appointment they only wanted to know two things: 1- What is your gross income? and 2- Do you own anything? They didn't care about our household bills, because electricity is optional evidently. They told me that I could ask for help from Medicaid as a secondary insurance and that is when I broke down.

I have just started coming out of the withdrawal I have been feeling for months now. All the "fight" drained from me. Aiden missed appointments with specialists and I didn't care. Thankfully he is a very healthy little guy on his own. We have been trying to figure out what was causing his constipation, but we have that under control now, and that was the appointment he missed. I was spending money on doctors, therapists, and specialists hand over fist. Every week we had an appointment to keep and we needed help. Help we weren't getting and still aren't getting. My husband picked up two extra work shifts a week and that has off set our need.

This is why I lost it. I didn't feel like I was asking for much. I didn't feel like what I was asking for was out of line. I wasn't asking for my whole family, I was asking for Aiden alone. Just something to help off set the money we are paying for his care. In this country, you have to be drowning in order to get help. We were barely keeping our heads above water and were asking for help. You can only be smacked down so many times before you feel completely drained. Now I'm angry, but I don't know who to talk to about it.

In a sense we are lucky and I know that. Aiden is high functioning and if he weren't we would be worse off, but that is the mind blowing thing. I know people who have loved ones on the lower end of the spectrum and they have had to refinance their homes and take loans in order to pay for medical bills. What is it, exactly, that families in America have to do? I pay money to my government, involuntarily, for the benefit of others. I have met people who draw SSI benefits for things like epilepsy, yet they drive cars. For depression, yet they commit crime. So I fail to see how my request or better said requests are ungranted. And I feel that they escalated in the most proper manner I could think of, from "least" to "most" impactful.

Our story is repeated hundreds, maybe thousands of times, all over the country, by so many more families. Staying strong and present is hard after enduring so much. In times like this its hardest, but most important to remember you're not alone.

Thank you for letting me be human. Thank you for understanding, some if not all of what I am saying. Be sure to follow us on Facebook for the latest updates. 

Relax...Its ok

My son has Autism and my daughter is neurotypical. I have a husband and a job. I run this blog and the Aiden's Heroes Facebook page. I have a home sales business. Among all these things I have to find time to maintain my vegetable garden and stay on top of household chores. Many of you are a lot like me. Many of you have a lot of work on your plate. So you ask how do I find time to relax? The answer is difficult and simple: I make it.

I make time to relax. Sometimes it comes at the cost of house chores or a blog post, but finding time to maintain your sanity is very important. Did you know, according to preliminary findings from the IAN Network, as reported by Autism Speaks, approximately 44% of mothers and 30% of fathers to individuals with Autism have been diagnosed with clinical depression? The study reports that 50% of these cases began before the birth of their child with Autism. That means that the other 50% of the cases came afterword.

Stress is my biggest enemy. I find myself under constant stress and on an almost daily basis. Its tough on me and it makes me, at best, irritable. I know that and I notice when it gets worse. For instance today I am more edgy that usual. So I know its time for me to take time to relax. A 2009 article published by Disability Scoop discovered that, particularly mothers, of individuals with Autism experience stress similar to combat soldiers. What does that mean? Its constant. Its a constant bombardment of input and attempts to regain control of your environment.

Its easy for someone to say "you're the parent, so you are in control", but any parent of a child with behavioral disorders knows better. When you are the parent to a child with Autism you are barely holding your head above water, at least that's how it feels. You are probably more in control that you realize. I remember the first time our ABA therapist said "He listens to you very well". I could only say "Really? Because most of the time I feel like I am barely in control". From the outside looking in she saw someone in control, when inside I feel almost constant chaos. I am sure I am not the only parent that feels like this.

So what techniques do I use to relax?

1- A nice hot bath after both kids go to bed. Nothing clears up tension in my shoulders like a hot Epsom salt bath, Its my best form of therapy by far. To add further relaxation I will turn out the lights, light a few candles, turn on some light instrumental music, and sip a glass of red wine. Sometimes I add lavender and chamomile bubble bath solution for some aroma therapy.

2- Watch a movie. Pick a movie you love or have always wanted to see. There are great places to rent movies or get streaming video. Shut off the lights, pop some popcorn, grab a box of chocolates and enjoy some entertainment. You can do this after the kids go to bed, or you can do this while the kids watch their own movie in another room. 

3- Splurge every once in a while and treat yourself to a full body massage. Massage is commonly avoided by most people since it seems frivolous. Actually massages, for the money, are well worth the cost. Most are only about $60-$75 for a whole hour. When you break that down per minute its well worth the experience. In fact, there are many health benefits to be gained from professionally administered massages. I have had a few in my lifetime and I think its terribly important to do so annually, at minimum. Ask for it for your birthday, Christmas, or other holiday. Family members will give you gift cards or certificates for massages. And you don't have to be naked during a massage, if that makes you uncomfortable! 

4- Have an at home date night. Its so important for parents to stay connected. An at home date night can do just that. Eat snack size meals throughout the day, but cook a beautiful dinner at home. You can do so together if you would like. Turn down the lights, add some candles for a romantic ambiance, and put on some instrumental music. Or build a living room tent and watch a movie under the sheets. You don't have to spend a lot of money to keep the spark alive or to open the communication lines. Here is a great link for more ideas.

5- Read a fantasy, fiction, or sci-fi novel. Why? Its unrealistic, adventurous, and does not engage your overworked mind with lots of information. Instead these novels stimulate other parts of your brain and don't overly tax your thought processes. Its important to read things off topics that stress you. Work for instance, don't read books about what you do for a living or about Autism, in an effort to relax. You may thwart your efforts. I am not saying don't read to educate yourself in your profession or about health care issues, please do, but if relaxation is your goal I suggest reading something off topic. 

6- Craft. Crafting is fun, budget friendly, and joyful. I scrapbook, knit, loom, and paint to relax. I find all of these things enjoyable and easy to do any time of the day. I also love to write, though its not crafting, writing is a creative process and allows for a release. Below is a photo of a horse I knitted recently.

Do not deny yourself time to relax. It is extremely necessary for you to momentarily remove yourself from the world around you and do something calming. Always remember it is ok for you to pay attention to yourself. It is not only beneficial for your health, but the health of your family too. How can you care for them, if you do not care for yourself?

We are always here for you at Aiden's Heroes. Need a topic covered that you haven't seen yet? Post to us on our Facebook page, Aiden's Heroes, with your ideas!