We’re All In This Together, Yet Alone

disabilitywolf

I still recall with great clarity the day that I realized something was “not right” about the way my son was developing. For many parents, it’s the way their child avoids looking at others, a unique way of playing with toys, the disinterest in others. Yet, despite all the glaring signs in front of us, we are often told by family, friends and even seasoned professionals that we are being impatient, reading into things too much or not allowing enough time for our child to develop “normally”. I was told all of those things by all of those mentioned. An extended family member told me that, “Parents have been raising children for millions of years without all these issues”. This same person today has come full circle in some ways and has accepted my son for the unique individual he is. However, while many parents are fortunate to be surrounded by supportive people, I was not. AT ALL. My husband was in complete denial that there was anything wrong with his son, and since he was abusive to me, I had to revert to doing a lot of my research on the side, away from prying eyes. I would eventually work around his disinterest in the services and accommodations I found and applied for because of the benefits it would bring to the family.

I recall the first time I searched for a support group. I was stunned at the lack of local groups and even though I felt inspired to create my own, I had no idea how I would ever do such a thing. Looking back, I wish I would have been more proactive and done more to make that happen. The feeling of isolation I felt was profound and I never really made connections with other parents, certainly none with parents of children with disabilities. We had very little back then, one vehicle, and my ability to branch out and seek out help were shut off, constantly cut off at the quick whenever I tried to make things better. So, I did what a lot of parents do. I read, tried to learn more and sought out help as I could. I recall my first phone call to the local Head Start program in my area. My husband did not make much in his blue collar job, but I asked if I could apply for services. When I mentioned the gross salary before taxes, the woman stated that he made way too much money for my son to qualify and that I should seek out a preschool or daycare option for him. I still roll my eyes at that. Most of the facilities I’d looked into were well over $100 a week, far out of our budget’s range. He missed out on so many early intervention options. I called around to so many places, my inexperience glaring with each phone call. I didn’t know about the local Infants and Toddler’s program that could have brought services to my home and helped identify my son’s issues. It wasn’t until the day of preschool registration at his local home school that I would find out just how “different” my son was. For the first time, he was in a school library, with so many sensory experiences bombarding him that he had a complete melt down. I was fortunate to find out about the school’s program at that time, but the YEARS of early intervention I lost still haunt me to this day.

BrokenChain

There is such a chasm that exists between those who need help and those who receive it. It took me years of calling, reading, researching, fighting, compiling and many failures until I found the services that eventually enabled my son to thrive. There are many people who don’t want these services to exist. I’ve been criticized for not working, when people do not understand that you cannot just drop your autistic, bi-polar child with severe anxiety, depression and suicidal tendencies off at the local day care and head off to the office. Sure, there are some who can. Many families are fortunate to have their degrees and a good job in place so they can afford day care that works, or they have a solution that enables them to thrive. For many, there is the struggle of needing to be there for your child, to take them to the many appointments they need, medication management, individual therapy, speech therapy, occupational therapy, be there for them when they get home from school since you can’t afford day care. I don’t want pity, an award, a pat on the back, I just want people to know that there is a crushing need out there for people who are dealing with this. I hear the all too often cry of “People need to get off their lazy asses and get a job! I shouldn’t have to work to pay for other people’s unwillingness to contribute!” If people only knew that making it easier to obtain early intervention services for families makes the likelihood of a child succeeding in school and life far more likely to happen than allowing the child to languish without any help, maybe they would see there is an end to the means. Sadly, the debate rages on. There is a disconnect between most state agencies that I still find appalling today. I thought I was so strongly versed in all the services out there, yet I still find out about programs and other things available that could have helped so much years ago; lost opportunities. Still I forge ahead. For all of those just starting their journey, I have a little more hope than I did when I first started out. There are better avenues to search and people are finally starting to begin the infancy of awareness that needs to grow exponentially before there can be any true help for these families. My greatest wish is that politicians, families and those not dealing with disabilities would open their eyes and realize the good that can come out of doing the right thing and helping these families thrive. You’d be surprised what those what disabilities of all kinds can accomplish if you’d only take a moment to see.

seemsimpossible

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