My son will be turning 8 years old in a couple months and I would love to say that everything is perfect and the community embraces children with special needs, but it is not the case.
I don´t like to write when I am sad or frustrated, but I want to share this reality as well. Being a single mother is not easy, but being the single mother of two children with Down syndrome is a major challenge sometimes, and it has nothing to do with Down syndrome or my children. It is all about trying to make them fit in a society that is not always willing to include them or take the extra step to see their abilities over their disabilities.
Being a single working mom of children with special needs
I have said this before, but I am going to repeat it many times, for the rest of my life. I feel truly blessed for being working at the Florida State Early Intervention program.
I don´t think there is any other place that would give me such flexibility when it comes to working hours. They also value the input I am able to offer to other families and my community. But, when I think about all the other parents of children with special needs that are not as lucky as I am, I cannot help but ask myself:
How do they do it?
How do they survive raising children with special needs when almost every school camp or after school program will tell them that they are not qualified to take care of their child?
The frustration of not finding after school care for special needs
After ten phone calls to different childcare centers, I feel stuck in the frustration of not finding a single place in my city where they feel qualified to deal with a 7-year-old with Down syndrome, who happens to be just like any other child with the only difference that he is not able to talk as well as others kids do at the same age.
My daughter is still fine, she´s four, so she easily fits in a toddler classroom with no drama, but what about my son? Is he destined to stay home forever when school is off and I am at work? It looks like he does not deserve after-school-care just because he does not fit into what is considered the norm.
Special programs anyone?
They don´t exist in my area, and I can´t imagine it is because of a lack of resources. I live in Naples, Florida, a pretty affluent area.
Parents have been fighting so hard to make inclusion (education) possible, but I realize in practice, inclusion is really an illusion.
Every cloud has a silver lining
I will keep looking and I will not give up. The first years in the lives of children with special needs are really simple.
They look cute, they are considered angels, everybody wants to hold them and smile at them, but when they start growing everything seems to change and I really don´t understand why.
We are in the United States! I moved to this country thinking life would be perfect for my son, but guess what? Life is not perfect anywhere and wherever you are, you need to make your own fight to make others believe in the ones you love.
I am sure tomorrow will be a better day, but I just wanted to let you know and let myself know, that it is ok to feel like this sometimes. What doesn´t kill makes you stronger!