Which way to go??

      Sometimes its a pain being a single parent, making all the decisions and  facing the consequences of those decisions whether good or bad. Being a single parent to a child with mental illness, I’ve found out those decisions are even harder to make because there is a greater amount of error possible. I’ve found myself stuck several times in a catch 22. Damned if I do and Damned if I don’t. At those times I feel like I’m rolling a dice to see where I land. I try to make the best decisions I  can for my children. I seek a lot of advise from my mom and from my son’s counselor. At times I think I annoy them with my doubts, but that isn’t my worry. My children are my worry. My mom is strong in her Christian belief. So a long time ago during one of her talks she says, “Aimee remember God doesn’t give us more than we can handle”  My reply was ” I wish God didn’t think I was so strong” 

            The hardest decisions for most families are financial, education, and beliefs. For a family with a single parent with a mentally ill child it includes medicines, therapy, and doctors. Financial for me personally is a very hard one. I live below poverty. Up till about 4 years ago I worked a minimum wage job and barely made ends meet even with my son getting SSI. About 4 years ago Joey had a very bad set back. I missed so much work; I ended up quitting to make it easier on both my job and myself. At the time we were on medicaid, food stamps, and SSI. Joey’s counselor brought us applications for other programs to help, but we never qualified for most of them. Joey isn’t listed as Mentally Retarded. While he has the diagnosis of Asperger’s Syndrome, it isn’t the main problem. We weren’t homeless so we didn’t qualify for housing assistance. We scraped by. 2 years into it I had enough and tried to go back to work. When I worked we lost medicaid, because though I made 7.15/hour and worked 20 hours I made to much and lost medicaid and food stamps. They add in SSI into the family budget. I couldn’t afford Joey’s medicine so I quit working again to get assistance with his medicine. I can’t tell you how many times I’ve had utilities disconnected to borrow money to have them turned back on. Again we didn’t qualify for energy assistance, because we weren’t on a housing program. I am currently looking for ways to make money from home, because I can’t afford to pay someone to take care of Joey and he must be supervised at all times. The Childcare program only goes to the child is age 12 and the adult care program doesn’t start until age 18.. so that puts us in a bind. I do babysit and do other odd jobs like housecleaning as I can get them. So financially its very difficult.
As far as education is concerned, we have been blessed to live in the school district that we do. Our school is awesome. Joey loves school. They treat each child like they matter. The school is very involved with every pupil from the principle to the classroom aides. Our school has helped up get Joey where he needs to be. Our yearly IEP meetings have at least 10 people involved in them. The principal or vice is always there, as is the school counselor, one general ed teacher, the special ed teacher on record, every therapist, the students case manager if they have one, and the do everything in their power to get the parent there. I can’t not sing enough praises for our school system. They have backed us in so many ways. Joey use to fight going to school. He had so much anxiety. The school helped eliminate that anxiety and he goes without any problems now. The hardest decision I’ve ever made for education was what classes to put him in.
Since my child strongly doesn’t believe in anything, teaching our Christian beliefs is a challenge. Joey had a hard time with the difference between fantasy and reality. He was taught at one point that fantasy was what you couldn’t see and reality is visual. So unfortunately, he believes that God is a fantasy. We don’t let that hinder our talking about God and the bible. We just don’t make a big deal about it. It works for us.
Medicine, therapies and doctors all go together really. Its extremely hard deciding which way is best. One problem is after we decided we usually have to get approval from Medicaid ( which is stupid a lot of the time). Anther is learning what different types of meds do and how they react with one another. Being up to date on side affects and follow up appointments. It makes your mind spin. One major error on our part had my son dealing with a sever allergic reaction called Stephen Johnson. He was in the hospital for a week and then took a month to heal. He was lucky. It could have been worse. Hes had to be hospitalized once because a med did the exact opposite thing and caused him to go psychotic and attempt to hurt himself and his doctor. So medicines can bad reactions and then there are the medicines like Zyprexa that really help him. Therapies can help as long as the child receives something from it. Joey once did brush and joint therapy and it would make him more agitated. His brother had the opposite it calmed him. Joey does great in group therapy because it gives him a chance to socialize and to learn that others deal with some of the same issues. We learned through trial and error though that he needs someone to attend with him to keep him focused. Doctors all I can say is that if your doctor doesn’t understand your child it won’t go over well. Joey talks in code a lot. He vocalizes what he feels. examples: anxiety= “There is a tornado in my stomach” a migraine= “someone is hitting me with a hammer” and indigestion= ” Someone is tearing apart my insides” We have had some good doctors who take the time to talk to Joey and understand him. We’ve also had some bad doctors and I’ve had to fight to get him moved from their care. Always trust your instincts where your child is concerned. You truly know them better than others.
Decisions are hard and many have lasting effects. Just use the best judgement you can and don’t beat yourself up about the bad ones. Just learn and move on to the next one. Don’t be afraid to seek advice or help and be willing to put it all out on the line. No one can truly understand what you are going through if you aren’t willing to share your dirty laundry. Have patience and always remember to take a few minutes out of the day for yourself. Just know if you aren’t truly alone in this mess. Others are facing similar things.

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2 responses to “Which way to go??”

  1. ShelbyF says :

    I’m sorry about your struggles. I can empathize completely. I was a single mom for 8 years and my son is epileptic. We struggled with many of the same issues. I had a hard time supporting us with his medical bills and yet I made too much for any assistance. Hang in there and make sure you connect with people. Support groups are awesome. I’m married now, but I sell AVON for income, and something for me to do because I’m a stay at home mom now. Mostly because my son’s epilepsy makes it difficult to work. If that’s something your interested in email me at shelbyfoos@yahoo.com and I’ll answer any questions you have about it. Just remember hang in there, and your never as alone as it feels. There is always someone there!

    • ziiya says :

      Thanks for the kind words. I am in a couple of support groups online. There are none around our little area. We (casemanager and I) are starting one in the upcoming year. I’ve never thought about selling avon though its a great idea. I mainly right as a way to voice my frustrations, to generate ideas, and to let others know that there is atleast one other person who understands what its like raising children with a disability.

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