Its been a while since I was last able to blog. One thing after another kept me from having the ability or time, which is how it goes in this household at times. Currently we are in Joey’s manic phase. Our entire family hates the manic stage. Life is extremely difficult currently in all aspects. We never know when Joey might explode and be dangerous. His medicines really aren’t helping either. He is back to hearing things and seeing things. While we have been dealing with this, I have been working on getting some financial assistance because things are tight and lots of disconnect notices, but I keep running into Catch 22’s. I was planning on trying to work third shift but due to Joey’s unstable situation that possibility is no longer an option. I went searching for help, but most groups are out of funds. I have gotten told a few times that if I was working they would help, because they are non-profit to help low-income working households. I could go back to house cleaning and picking up clients for the hours Joey is at school, but that requires a car. The newest Catch 22… I need money, to get money requires working, working where I live requires a car to get anywhere, to get a car you need money….to get money one needs to work, to work one needs a car, to get car you need money.. See the catch?
So anyways the situation I’m in has made me look outside the box. I think I’ve looked at every idea online I could find. I found myself, during my search, looking things up for additional support for families with mentally ill children and couldn’t really find anything. Its like, it’s a blemish on society and should be ignored and forgotten so maybe it will just disappear all together. While people talk about mental illness and realize the dangers of untreated mental illness, people still think the mentally ill can just quit being mentally ill and that those same patients are just lazy as is there caretakers. They don’t see the trials and tribulations that families and caretakers face or that some of these patients seek help and are undertreated. Example My son has a wonderful psychatrist and casemanagers. He has been part of an awesome practice called Intensive Youth Service, but as much as they help we still run into a lot of problems. Insurance company not wanting to pay for certain meds or the way the doctor wants the medicine delivered. The IYS group program that taught my son how to manage in group settings was discontinued due to no funding and insurance companies deemed group sessions were not necessary. We are on so many waiting list for help. Some of those waiting list are for help financially (one has a 9 year waiting list), but majority is waiting list to get into programs that are designed to help with daily living skills, socialization, and other problematic areas. Majority of these programs have very little funding which means they can only serve a few patients at a time.
Maybe that mentality of society on mental illness is based because of television and journalism. The only time you see anything on tv news or in journalistic papers and magazines is if one of the thousands mental illness people do something horrific then the news is lit up for a very short time. Or if something major happens in a facility. I’ve noted the news and even government arguing about stricter gun laws.. why not get more knowledge and support about mental illness? Why argue one issue but not another issue with the same intensity? Only time I know of that you get a little sense of mental illness is on tv dramas, but those are fiction and so no one takes them seriously. Why do daytime talk shows, like Maury, always produce shows about who the babies daddy is and never once mention anything about what families go through when dealing with someone with Mental illness. Mental illness entails a whole lot of different diagnosis, but I bet the majority only think of a few because the only exposure they have had is about the severity of a limited number of conditions. I just wondered why does society want to make it harder on families dealing with a mentally ill family member so that the family in general fails, but wants to uplift on national tv who’s the baby’s daddy? (side note I watch Bones and I applaud the writers who actually use the psychologist “Sweets” to accurately describe some mental illness out there throughout the show)
Maybe dealing with my son’s condition every day makes me view things differently. Maybe this is a way to vent. Whatever it is, there is still a problem with how others view mental illness and a problem with society not caring that those same families, caretakers, and the mentally ill are struggling just to have the basics of daily living. They don’t see how so many lose their Quality of Life because they struggle to do everything themselves to make sure their loved ones are taken care of.
Sorry! We are closed was a sign I would have loved to have all weekend and today also. I’ve been sick with a bug since Friday. Being sick and a single mother is the pits add in a schizo-affective child and its downright a nightmare.
My lovely teenage children said “Mom you can rest and sleep. We will be fine.” On Friday. I thought, “great. Maybe if I sleep a few hours and drink fluids it will go away a quickly” My children had other plans. They would wake me up for anything including to answer the phone. Now everybody but my children ,I guess, know you can’t get restful sleep waking up and going to sleep constantly. About three hours into being woken up every twenty minutes for “can I eat this?” “Do you know where .. is?” “Mom can so/so come hang out over here” and other things I got agitated and said I give up. I got out of bed and tried to start my normal Friday evening routine of cleaning up the house. My daughter rushes into the living room and says mom you look awful go back to bed. Said can’t you all keep waking me up. She walks over and says, “Mom your running a fever. I promise to take care of everything and let you rest even Joey” Her biggest mistake is saying I have a fever in front of Joey.I go lay down trusting my daughter only to have Joey show up beside my bed. He wants to take my temperature with the thermometer. I agree mainly because if I didn’t he wouldn’t go away and because it wasn’t a bad idea to know what it was. My fever was 101.5. My son freaked out saying I need to go to the doctor if it goes any higher I will die. I had to patiently explain a 101 fever wasn’t that bad. I explain you don’t worry about a fever unless its 103 or above or lasted more than a few days. He understood, but he decided to watch over me. So he played on the computer and listened to music and talked with his sister all from the end of my bed. Again No sleep did I get till he went to sleep. Saturday morning my fever was gone with use of medicine and I felt fine for about two hours. I got very tired and went back to sleep. I couldn’t wake up fully all day long. My daughter was good about trying to keep the noise down from her and Joey but my cell phone was going off like no tomorrow. I still don’t remember what I said to half the people who called. As far as I remember Joey was glued to my bed with me since he was still watching over me. Sunday I woke up late. I had the total day planned to get things ready for the next week and was behind schedule. I made it up and out of bed. Took a warm bath. Ate brunch then had a pounding headache and the pesky fever and extreme tiredness were back. I laid back down and went to sleep until my kids woke me up arguing over who was doing what and when. I settled the argument by telling them to follow the schedule. Then fell off into never never land again. The next time I woke about 5 pm the house was dark and very quiet. Everyone was asleep. I ate a little and drank lots. then feel asleep woke up at 8pm from son saying If I didn’t get up and make him dinner he would starve. (Hes always so dramatic) I made chili and we ate and watched a movie before we went back to sleep.
This morning I woke up feeling a little better. I actually ventured around my house to wake kids up for school and I wished I just stayed in bed. My house was trashed. No one around here knows how to pick up after themselves. I still don’t feel well and I know Im gonna regret it, but I’m attacking the house while the kids are in school so that its back up to my standards. That is if people would stop calling me or knocking at my door.
Sometimes the hardest things to do are the easiest things to do. I know a lot of people take for granted the things the do every day like going to the store or taking a walk. Recently, we met with Joey’s psych and I was praising him for taking a shower every day without being told. Every day things are sometimes the hardest things for Joey to do.
I’m still very proud of him for taking showers regularly without being prompted. Yes he is 14 and I know most 14 yrs olds this is very common and easy. Joey it isn’t so easy. He used to hallucinate that bugs and such would come out of the spigot or drain. He also saw no point in taking a shower. Some magic switch was flipped and he just started doing it. At the same time he started doing his own laundry. (He still needs help as he forgets about washing underwear and socks) The only downside to being more responsible is the more prominent random irrational thoughts. Its very hard as a parent to decide the next step when you accomplish one but lost another that he had. You have to chose your battles extremely carefully to try to even out their lives.
One of those battles is whether to conquer a lost step or just start on a new one. One step we are working on again is to get Joey to go outside to take a walk or go to a friends house. He will leave to go to the store or to school. Things he knows what the outcome is. He won’t however go to see if a friend wants to hang out or to take a walk with no purpose. His anxiety on both are to high for him to currently manage. A lot of my decisions are made on how they will affect Joey. I don’t want to purposely be the reason he loses one of his steps hes already accomplished.
Some days I feel like we take one step forward and two steps back, but when we do accomplish things its such a great feeling. I’ve learned a very important lesson over time. Its very important to take pleasure in even the littlest every day accomplishment because there is probably someone out there who is having a very hard time learning to do it.
We will keep plugging away at the every day things even if they should be easy because I know for Joey they aren’t. I will also continue to praise him on completing those task even if its the 5th time we have completed it and lost it previously. He deserves it because hes not giving up as long as he keeps trying.
My words of wisdom today is be thankful for even the easiest accomplishment because to someone else it might have been the hardest.
2013 is here and with it comes new goals and dreams. Every year the kids and I make new goals for the following year. We never seem to stay on tract to the new goal though. With Joey, those goals are often thrown out within the first week. So this year I decided I will try something new. I still made goals for myself but for the family I decided we would have one goal a month to achieve an ultimate goal for the year. This way if we have to repeat a small goal because things go haywire one month, we don’t totally miss the goal for the year.
I am hoping that by posting our family goals as well as my personal goals it will give us another “person” to be accountable to and give us added incentive. In the past being accountable only to ourselves there was no joy for achieving a goal and no disappointment really in not achieving it either. I also want to show others that even with disabilities children can help set goals and achieve them as individuals and as families.
So here is our ultimate family goal for 2013. Our ultimate goal is to have family harmony in our living environment. By that we mean that by 2014 we will have a workable family schedule everyone is following, there will be limited fighting, and that everyone will be responsible for his/ her actions and jobs within the family. Now to obtain the ultimate goal at the beginning of every month we will set one goal we wish to obtain to help us get to the bigger one. So for the month of January our goal is that everyone follows the chore chart and does their chore daily without more than 2 reminders in a day. Please bare in mind due to the disability my child deals with goals have to be fitted to him so we added in the reminders. Every Sunday I will try to post on how we are doing towards our goal.
I have few personal goals I hope to achieve this year. One is to lose approximately 100 pounds. This goal I have been working on for a while and I am losing weight slowly. Another goal is to be self sufficient. Last year had been hard on us financially and so far this year isn’t looking any better. I am determined to find a way to earn money at home to financially take care of my family while I provide the supervision, emotional and physical help my children need from me. My last main goal is to run a smooth and orderly household. If you ever see my house or the chaos that can happen during one of Joeys episodes you would understand this goal. To many times I feel so ashamed of how my house gets when things go wrong. My hope is that if my home is fully organized and runs smoothly even during an episode things wont get to far out of hand and can be righted quickly. One goal I have is a purely fun goal and that is to save enough money to take a family vacation. My children and I haven’t had a family vacation in 9 years.
So here is to the new year and achieving those goals we have set for ourselves. Even if we do not achieve all we set out to do. at least we will be proud that we gave it a try.
There are a few sayings and things my children seem to live by and that annoy the heck out of me. See if you recognize any of them:
1. I didn’t make the mess so I’m not cleaning it up. Well pretty much 95% of the mess isn’t mine either but if I can clean up after you, you can clean up after each other.
2. Are you sure I have to go to school? Yep its my peace and quit time.. oh and they teach you all the things you swear you already know.
3. People who make bills should go to jail. They are stealing our money. While I tend to agree sometimes; its just the way the world works.
4. I didn’t get another turn on the computer like Michael did. You can insert any of the children into this equation. What I cant get them to understand is while we try to make things as fair as possible, there is only so many hours in a day and sometimes its just not fair.
5. When are you going grocery shopping? There is no food to eat. I love this one as we always have food. We just don’t have junk food. Or the fast throw in the microwave types of food. There is plenty of veggies in the fridge to snack on.. or You can actually cook something to eat.
6. When are you giving us our allowance. You already owe us the last few weeks. Your allowance isn’t an automatic thing. Its called doing your chores every day without being asked. So as of today I owe nothing as you have done no work.
7. I’m bored. There is nothing to do. There is plenty to do. You just don’t want to do it. You can wash dishes, scrub the bathroom, clean your room, or do some laundry. You could also get your brothers and sister to play a game, read a book, or go for a walk.
8. Mom where is my…..? I am not the keeper of your items. You are responsible for your own items. I am only responsible for you.
9. I have it worse than you because…. For whatever reason my children feel they must debate with each other why they have it worse and there forth should have more privileges than the others. Again we are back to the lesson life just isn’t fair. I have yet to convince any of them that there are people out there who have it worse than they do.
10. Mom I need ……. Every day my children come to me swearing they need this or that. Right now my youngest wants an Xbox 360 and my daughter wants minutes on her cell phone. This is where I get to talk about money doesn’t grow on trees and if they did their chores and saved their money then they could get what they want.
For some reason my lessons that come with these sayings always seem to go in one ear and out the other. So come tomorrow we will be going through the list again I’m quite sure and while I’m giving my lessons I’ll be wishing for a miracle.
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.
After much anxiety (both for Joey and myself), Joey attended his first semi formal dance. I was so proud to watch him do another milestone in a young persons life. As with most schizo-affective people, Joey has problems completeing daily living skills including taking a shower. On the day of the dance not only did Joey take a bath, but he did so without even being asked. I helped him fix his hair. He was so grown up in his suit. He was on his best behavior. He needed to be reminded very few times about what was socially acceptable. He went to the dance with his sister and her friends. They were wonderful with him and helped him be comfortable in the crowd. He even got his first slow dance as a girl in his class asked him to dance. He was so excited he talked about it over and over again for 3 days.
Holidays are always rough around here. Joey does so much better on a schedule and during the holidays those schedules go right out the window. Christmas Eve we had some extended family over for dinner and so that the kids could have christmas together. The way our families work is I have all 4 of my children on Christmas Eve and then thier fathers get them Christmas Day. We have been doing it this way for years since my family always did things Christmas Eve together and my ex’s families do thier gathering on Christmas Day. Anyways… So Christmas Eve went over well. Joey recieved a tracphone, a remote control car, a 8 gb flash drive for his videos, an mp3 video player, Night in The Museum 2 DVD, and Axe body wash and body spray. He loved everything. He got a cheap cell phone for 2 reasons.. One if he loses it Im not out a lot of money and 2 he never uses the phone for some reason so we are gonna use it as therapy. Joey and I made a deal I would upgrade his cell to a nicer one if he keeps track of it and does his chores to keep minutes on it. I am hoping the cell will give him more confidence in answering the phone and to use the phone to call others. His Mp3 video player was yet another coping skill we utilize. His other mp3 broke so I needed to replace it.. So as a present I upgraded it to include videos. I have learned over the years to try to make Christmas and birthday presents double as coping skills. Since coping skills play a huge part of our lives it only makes sense to get him the best that I can afford. So Christmas in Joey’s eyes was a huge success.
We are now facing the new year and what surprises we have in store for us. We have been working on our goals and thinking about past achievements. Its a time to be reflective and hopeful at the same time. Its a time I take every year to remind my children that dreams are important in your life. You need something to reach for. Dreams can be big or small. So take time to Dream and remember anything is possible if you try.