My child has multiple disabilities, currently on home instruction after a 3 year battle to have him placed out of district. The school system finally admitted their inability to meet our son’s needs and need to place him in another setting. My husband and I have lost a total of 5 jobs because of disciplinary actions taken against our son, causing us to have to leave work without notice or call out because of early morning bus issues. We no longer have our own means of transportation.
Our son has been denied SSI a couple of times, the last denial was over a year ago, I just gave up. The school’s and doctors were asking me why wasn’t he getting it and it turned out it was because of SSI/SSD not having the school’s and the doctor’s records. Our family is extremely low income and the snowballed effect of Ayden’s disability has caused us to lapse beyond 2 months on our bills. I make below minimum wage, as a waitress overnights (best shift, considering our circumstances) and make 30$/night, at times, and spend 14 of it to travel to and from work for the night.
We have a housing voucher that doesn’t consider transportation, phone, internet or new clothes and laundry a concern. They make me pay 30% of my income as my portion of rent. They have figured my rental portion to be an amount based on my June wages, the peak in the restaurant industry. Currently, I work 40-45 hours a week and get 2.13/hr. from the employer, which turns out to be nothing, it pays my taxes, and tips ranging 12-20%. This past work week, for example, I worked 42 hrs. and made about 250$ in tips over 5 days. 70 of that went to transportation.
My husband had a job and lost it, only to get another one and lose it, again, when an outburst couldn’t be resolved correctly regarding our son. We begged for help along the way. We were told of so many services that were going to be offered for years. Now we are suffering hardships almost beyond repair. The state is slow at handling our affairs and their policies are outdated, a car is NOT a necessity and my son is only ‘disabled’ if he gets SSI in some instances. Basically if there is no value on his disability, he doesn’t have one.
We have a lockout date of 10/10/14, and correspondences dating back to mid-August asking for an income adjustment. The state is forcing me onto the streets by not adjusting my income accordingly or giving us the chance to obtain a vehicle to save the 30% of the gross wages I spend on cabs and busses. I don’t even want to go into detail about how I pay my electric as “other rent” that isn’t considered with regards to my voucher.
Times, like these, are hard as it is for anyone, and having a child who is incapable of understanding the need for us to work and him to go to school is an additional stressor that can be avoided with proper attention. We need help in finding security in whatever school system we end up with, assurance that our son is going to get the same quality education by people who are trained to meet his needs. I feel that his disability should have been the approach we took the entire time.
We struggle through poverty and are barely keeping our heads above water, at the moment. We are told by some agencies, like PHA’s, that we make too little to qualify for their low-income programs, and then we are told by government agencies that we already get a rental subsidy through an agency and can’t get anything else but the food stamps that run out mid-month because of the convenient stores being more expensive and having no transportation. We even have to pay surcharges on purchases under a certain amount in town’s local stores.
I do not have a car because when I did, it needed repairs that totaled 2 months living expenses. I couldn’t get any help from local churches, I don’t have any friends. My son is 7 years old, he still comes in to our bed at night and needs help wiping himself. He is a blessing, none the less. His potential could be reached if opportunities weren’t missed, like, helping me get my car fixed so I didn’t become a social problem. If some of the policies were adjusted to suit a modern day society, it would be less of a struggle.
My husband now has to stay home with our son, until further notice. We need help for families facing the hardships of having a child with Autism. We are raising underprivileged and disenfranchised children because cheerleading isn’t free and little league has a fee and the games are 10 miles away. Help that isn’t going to tell us we are too broke to be poor. Help that is more than just another intrusion into our lives. Getting tired of being placed under the scope and passing all views and still not in receipt of any services. We have a team in place, a case manager, a family therapist and mom and dad. Additional outside services, like social networking and extracurricular activities are not available in our area. We need help with branching out to people just like us, who have been through our issues. We need help towards self-sufficiency and resources to help get us there.
I have called agencies like Kars for Kids and have found that many of these car ‘charities’ are part of a loop of charities who all eventually lead to a different non-profit who needs you to create a profile and get votes to basically win a car. I can’t ask social services for a mere 2k to get a cheap car to get by and these agencies and corporations can rob thousands of people under a ruse. It seems like humanity is lost. The great depression never ended, wealth inequality was created. Class discrimination and services for privilege started.
I need help with the trials of raising a child with autism, its effect on the family and home and I need to be linked with services that help low income families of autistic children, it’s THAT simple. It’s NOT that easy. 100’s of emails and inquiries over the past few days- nothing. I am not down and out, yet, I still have hope for the Apocalypse to happen!