Guest Author - Bonnie Sayers
We are a close knit family, just the three of us. I am a single parent with two boys ages 9 and 10 on the Autism Spectrum. There is no room for negativity - so contact with my family on the East Coast ceased several years ago. The father stopped the court ordered supervised visits a few years ago, but was never a constant in their lives to begin with. I try to make sure they have both male and female teachers, as well as therapists.
Both my children receive Supplemental Security Income (SSI) due to their disability of autism. They each also receive Social Security Benefits off the Father's record. These are two different programs. The SSI is the one that comes on the first, the Social Security comes on the third. I am also the Home Health Care Provider for my younger son through In Home Supportive Services, known as IHSS. In order to qualify for IHSS services you need to be on SSI, have an in-home assessment and get the Pediatrician to fill out some forms. Recordkeeping for all these programs is a job in itself. I will share about these programs in another article.
My point for mentioning them here is that we are considered a low-income family. When my car breaks down we take the bus until money is available - which is the case at the moment. If I need to borrow money my only option is a check cashing facility that charges $15 to borrow $100. One year ago I filed for Bankruptcy (Chapter 7) because a credit card from fifteen years ago was trying to gain access to my checking account. Because I did not have any legal representation I did not know I needed to submit to the Court proof of the SSI payments. I took both my autistic children to Court with me and the Judge said he had no recourse.
I found an agency through the Yellow Pages that allowed me to make payments to get my Bankruptcy filed in a timely manner and save the SSI and Social Security payments. At least that headache is history, but I no longer have any credit cards to use for emergency purposes.
Two years ago I splurged with the income tax refund and purchased a video camera on eBay. Finally we were one of those families at school functions with a video camera instead of a disposable camera. This past spring break we went to Sea World with the tax refund money. One month later I came home after errands to find the house had been burglarized. My printer/scanner/copier, two digital cameras, the video camera, a tape recorder and the portable DVD player were all stolen. It will be a long time before these items can be replaced.
My children have benefitted over the years from being adopted from organizations for the Holidays. This has helped get them new clothes, sheets, backpacks and games. We also use some of the gifts to give to teachers, assistants and classmates. If your family is in need of assistance at the end of the year, now is the time to start researching the agencies and getting their names on the lists - by September and October it is too late.
Being the custodial parent with my family in another State there is no one else to depend on in emergency situations. Each year when I must enroll the children in school I have to contemplate a name, if there is one, to place on the emergency notification card from school. I have been writing the Regional Center down as the emergency contact. I worry that I might get into an accident on the way home from errands and end up in a hospital and no one knowing my kids are at school needing me to meet them there when they get out. I have stickers in my car noting that they have autism with one being non verbal. I have five bumper stickers on my vehicle mentioning autism. I have photos of the boys with data on the back of each with their school information.
While kids are at school I am able to do grocery shopping and laundry. Then there are the Doctor appointments, assessments, meetings and therapies to get to, sometimes on a weekly basis. There is loads of paperwork regarding their disabilities and reports to Social Security and authorizations for therapies and clinics from their HMO and the Regional Center. We also have year round schools with Matthew going to another school for the second year that is on a year round schedule with Nicholas starting three weeks later. It is very hard to leave Matthew at school when Nicholas is with me and Matthew seems upset that his brother is not at school. There are many adjustments to be made during the year, including the times when we have to change clocks. This is disruptive to the sleeping schedulew with Matthew waking up very early for the week prior to the time change.
When school does start that always means new shoes, socks and haircuts. Due to limited finances we are only able to afford one pair of shoes each. There are resources in the State of California that help families who have a disabled member or two, depending on the disability too. The paperwork and time involved in getting services and reimbursed is consuming and requires lots of follow-up via phone and mail.
I have seen other families have relatives or babysitters take their kids to camp and most have one parent in the morning and the other one picks up the kid in afternoon. I am doing this all alone and seem to be going nonstop. We use the library for books and video rentals since we do not belong to any video chains. My long distance got cut off several years ago when my son was in the Hospital and I finally got this service again last year.
My life has changed drastically since having my children and again when they were diagnosed on the Autism Spectrum. I am not in a position to move and cannot leave the State due to their father living in California and would have to get permission through the Courts. The IHSS program is here so there is no reason to leave the State since the services have worked well for us.
I have posted profiles in a few online dating sites. I mention honestly that I have two kids on the Autism Spectrum and that I am not in a position to go away on a weekend jaunt - now or anytime in my future. I am not looking for a father figure for my children - I am the parent they have come to rely on. I find it hard to describe myself listing interests and hobbies, as I have had none for such a long time. My whole identity has been linked to autism and my kids that I lost myself in the shuffle. This is not a complaint - just a fact and way of life in my household.
Respite has never worked for us - especially since I do not have an active social life. We have been through countless agencies with the workers in a revolving door. This is not the type of care I want for my children in order for me to go out once in awhile - therefore it is not consistent and no one stays. I am now with the third agency in four months, trying to find someone to be available the first week of August since I could not get out of jury duty. My excuse as being the sole parent to two children on the Autism Spectrum was not valid. I was able to postpone the jury duty until the summer making it easier - or so I thought, to get someone to watch my kids while home and out of school.
The Regional Center would not add more hours to my allotted 32 hours per month of Respite. Their response is that I should be excused. I sent them proof that I did all this and was denied. Still I do not have the hours or a person to watch my children. In one week I will be bringing my children to court to proove that there is no one willing to help me out and watch them so I can serve the jury duty.
This is just a small sample of what we are going through in our daily lives here as a single parent to two boys on the Autism Spectrum.
The United Cerebral Palsy Foundation runs a respitality program for parents of children with disabilities. There are chapters all across the country with websites offering details. This Google search will assist you in finding the closest location.
I first learned of the UCP respite program through a social worker who came to my house due to an anonymous call to their offices complaining about my children. Although I personally have not been able to utilize the free weekend at a Hotel - I do know of other parents that have and it is a beneficial and worthwhile program you can partake in on a yearly basis. For my area you need to find someone to watch your kids - some areas they provide the help.
It takes all kinds to report false child abuse, but in the end the workers are helpful and quite aware of children on the Autism Spectrum. Depending on the situation they can be a resource in helping you get services. During the first two years that my children were diagnosed there were three calls into the system.
After these experiences I started promoting Autism Awareness. I had bookmarks laminated with data on autism printed in English and Spanish on the other side. I carried them with me and handed one over to anyone who stared at us in the stores or other public places. I made sure security guards at the offices we had appointments knew about my kids and I was wisked into our appointments quickly. We all had a meltdown at the Pediatrician's office after waiting for a long time to see the Doctor, which resulted with us walking out. That drastic action helped pave the way for a great relationship with that same Pediatrician five years later. Placing a phone call to the office alerting them that we are coming in for a walk-in makes the wait time quicker as does bringing a backpack of favorite items. I also recommend any parent with a child on the Autism Spectrum to get the application for a disabled placard and start the process to get one. These should be available at your local DMV office or try their website to print one out and bring to the Doctor's office.
I was not successful in getting us into the Toys for Tots program, but if you try before school starts you might luck out. Sign up for the Family Friends program in your local area for a volunteer to visit with your children on a weekly basis.
A google search using Adopt A Family will help you find local organizations in your area to sign up and get some assistance this coming Holiday season. There is Volunteer match an online resource to help others and locate the non-profits that might have resources for your family. Another online site is Volunteers of America.
Please do contact me if you need specific help in locating some resources in your area.
Book Review - The PDR Family Guide to Prescription Drugs
Promoting Autism Awareness
Halloween for children with autism
Toys to consider for Christmas
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.