One of the reasons I started out blogging was to simply educate my readers on autism. Autism is a very misunderstood disability that people are quick to judge based on numerous things. Therefore, the only way for people to understand it is by being educated on it.
With that said, I hold back and refrain from educating my readers on many things because I don't want my readers to think that I am wanting sympathy because that is far from it! However, I can't hold back any more on particular topic and please know that I am blogging about this tonight because it is a serious situation not just with autism but with every disability and illness that requires 24/7 care by a caretaker. What am I talking about? Financial burden on families.
I came across an article today on the importance of planning for retirement when you have a child with autism or special needs. The article is what has encouraged me to write this post. I understand completely about planning for the future. In fact, everyone does. I have in place a special needs trust which is way too complicated to try to explain on here but it is the one thing that I have done to help protect Trenton when he is 18.
One thing this article pointed out is how can a parent plan for their child's future when they are unable to work because their child requires constant care. When a child's needs are severe even if they are in school it doesn't mean the parent has that whole 7 hours to work...you have to consider drive time......that may take the time down to work till 6 hours...then if there is other children like Andrew that has therapy and school so that takes my time down to 3.5 hours I have without the boys to work per day....its hard to find a job in that exact amount of time that is understanding about the situation...because finding a babysitter who is willing and cheap enough to babysit a child with severe autism is impossible to find!)
The article was a decent read that just simply stated the facts. It ended with this...."A special needs family can easily drain all of its savings. You are going to be plus years older than the child, and the worst thing is getting to the point where you are to old to care for you child and you don't have enough money to pay someone else to care for him."
Now, lets switch gears for a second. A person who has a disability and has been proven by the state that they are disabled can get social security. The max social security payment is 700 a month which you don't get till the person is 18. How can a person who is permanently disabled live off of 700 a month?! It cost money to live in a home for disabled people. After the monthly rent in a home, food, etc...how can anyone live off of the max?!? They can't. This is why it is so important that families start putting back money now for their child who will never be able to work and take care of themselves. But how can a family do that when they can't make it now?!?!?! Families can't make it now because one parent can't work and the divorce rate is 60-80 percent for autism families. Sadly, there are about 60-80 percent of autism moms out there just like me.
We are well below the poverty rate and I have been working for months on trying to get a loan for the house. It is hard to find anyone that wants to help and support single parent families of special needs kids. Please someone tell me how can families, single parent families, make ends meet and put money back for their dependent child one day?!?!? Especially when states don't provide the help to families now when they are younger. Very few states give funding and respite care to single parent families so they can go to work, etc. There is a huge lack of good people wanting to work with individuals with special needs and a lack of the right programs for families raising children with special needs. So yes, I fear the future for Trenton.
Given the trials in the life that I have been given, it sure has opened my eyes up and made me look at things differently than I would have if it wasn't for autism. We just never know what life will bring. We all need to count our blessings daily because they can change in a heartbeat and you can find yourself living a life that you never dreamed or imagined and that is perfectly okay! The worries and heartache that I have daily are all for the boys. I do what I do to make their life a little better for when I am no longer here with them.