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.
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.
I was reading an article today about a mother who was afraid her child would end up as a mass murder because she needed help with him and unable to get it. I was flabbergasted at some of the points of the article, but it made me realize to many people have no idea where to turn when thier loved ones start showing signs or of getting the help that is so desperately needed until damage is already done.
I was blessed to have found help as early as I did. I thank God every day for putting me in touch with the right people. That isn’t to say that everything was easy because it never is and I didn’t always get the help or answers I needed, but I have learned a lot. I’m taking the time right now to offer some words of wisdom from a parent who has been where you are and who is still traveling down the uncertain highways of caring for someone who suffers with a mental illness.
Number One: Seek help from a mental health agency. Don’t look just for a psychatrist, or just a therapist, or just a social worker, or just any one person. You need a team. I personally suggest a case manager to begin with. Our local Mental Health Center has an Intensive Youth Services department. My son has a case manager from there who not only works closely with my son and myself, but also there office has a staff meeting with the psychatrist and they go over all the kids’ files. This is a god sent for those days you find yourself calling the crisis line because the person calling you back may not know you personally but they know the case and how to direct you in the right direction. The psychatrist is kept up to date on what is going on to be able to say.. Hey get them in the office, or maybe we should try this instead. So when you do go to your appointment you don’t feel like you have to remember every little thing. These services will also help implement a safety plan/ or crisis plan and they will also set goals. Pick someone both you and your loved one are comfortable. If your not comfortable with who you got a assigned to don’t be afraid to say hey we need someone different. You need to be comfortable to tell them all your dark secrets. I don’t know where we would be if we didn’t have these services for Joey.
Number Two Find some sort of support system. I can’t not stress enough how much this will mean to you as you go down this long road. It doesn’t matter if its a support group online or close friends and family. Just find a natural support system that you can count on. Thier will be days that you will need to bend an ear; either to vent or just ask for advice, or even a sounding board. There will be days you will offer to lend your ear to focus on another’s problem so that you might come back to your own later.
Number 3 Realize its a trial and error process. Every person is different and that include mental illness. Its a huge trial and error. One being diagnosis, your loved one may get a few diagnosis because he/ she fits them then as time goes on they are revised and changed. With new symptoms and with new research things are changing all the time. Another part of this is that you will problable go through lots of trials with medicines. Different people react with different medicines. Just make sure you are talking with your nurses and doctors about everything. Little things matter and sometimes those little things are the clues you need. A good thing to start is a journal so that you can see whether you are truly making progress or not.
Number 4 For the safety of the person, yourself, and other family members stick up for yourself and don’t be afraid to let your voice be heard. The best piece of advise I’ve ever recieved is “No one knows your child better than you” so if you no something is wrong don’t let others sweep it under the rug. Take the article I mentioned at the begining . The mother said her child was going after her with a knife threatening her. After she manuevered the situation to where she was in control, she took her son to the er. The er said he seemed calm they didn’t have a bed there and sent them home with a potent drug. Now I’ve been in a similar instance where my child was not safe. I was lucky I was told by the mental health proffession what to expect and what my rights were. That mother had the right to say ” my son needs help now. he needs placement. I know my hild and what he has gone through and what he is currently going through”. Even if the place doesn’t have a bed they must find a bed in another facility or atleast give you the numbers to other places. You have the right to recieve assisance and make sure you and all your family members are safe.
Number Five Remember you are human. I sometimes forget that I don’t have to be the strong one all the time. I forget its ok to lose it once in a while. The fact is there will be times where you will be frustrated, upset, angry, not sure if you can keep fighting, and having feeling of guilt. Its all perfectly normal. No one is going to look down on you for losing your cool or for asking for help. Just remember two things. One you are your loved one’s best advocate because no one cares more for that person. and Two on days that look very dark just think of all the good things that you have witnessed. All the challenges met and conquered. Realize that it will get routine. Some days better than other but you will find routine.
Number Six Utilize Coping skills. One of the best things for us is the use of coping skills. Coping skills can be anything. Utilize those things that help calm your loved one. One of the funniest for us is food. My son always starts getting upset when he is hungry, yet for some reason he won’t voice he’s hungry sometimes. So when I notice him getting agitated I offer him a snack. Another is for him to reorganize his cards. Anything that will calm the situation should be used as long as its not dangerous to someone
Well for tonight those are my words of wisdom. I know I will have more advice from things I’ve tried or have been taught but for now my brain is shutting down. Keep your head up. If you have any questions please feel free to ask.
Its 7:52 am and all I can think is. YES ITS MONDAY!!!. Most people I know dread mondays. Back to work or school you must go. I, on the other hand, welcome in the structured days of sanity for my house. You see one of the most important things to a child with schizo-affective disorder is STRUCTURE. Thier thoughts and emotions are so jumbled that they need the routine of every day life to stay as close to identical as possible. So the weekends are our roughest time, because a major part of every day doesn’t happen. The kids don’t go to school. For an example of a weekend here, I will describe my less than stellar performance this past weekend.
Saturday morning my youngest two (who deal with thier own issues) went out to play. I played on my online game while my two teenagers slept in. Joey woke about 10. Sami, his sister a few minutes later. We only have one working computer and one tv with a dvd player. I can’t afford cable.. Anyways so Sami asked me to use the computer. I make the kids rotate with eachother for time on the computer. Each child gets one hour. Sami wasn’t on but 15 minutes, before Joey starts getting upset and growling. I ask Joey what is wrong and he launches into a long inaccurate rant about “hes asked for hours for a turn on the computer. When are we eating? Every body needs to shut up we are making to much noise” Now after having dealt with Joey for years I know I need to redirect him to get him to calm down and focus. So I start with feeding him. Every thing I suggest and ultimately make for him is disgusting. I suggest he play the playstation or watch a movie. I mistakenly suggested he could clean up his mess in my living room. HE procedes to tell me that he didn’t make the mess. That it was one of the boys. (This is extremely common because while Joey did make the mess he doesn’t remember it so he figures he didn’t do it) Joey continues to rant. At this point its about 12. (All I can only say I’m human )I lost it. I yelled back and told him everything that makes me frustrated. His sister and two brothers who had both came home by then got pulled into it. I felt bad afterwards but hey sometimes its what they need. Joey was apologetic and says, “mom all you had to do was ask”. Now you have to understand I do ask Joey and the kids to help around the house and such. Joey just never remembers. Luckily he wont remember mom losing it on Saturday. Well at this time I give him his turn on the computer. For the next hour, It was peaceful. No headaches no hassles. Afterwards Joey just decides to get his dirty clothes and put them in the washer. He doesn’t remember how to use the washer but he does get his dirty clothes together. Plus he got out his suit and got it ready for next week’s school dance he’s going to. Life is calm for about an hour or two, then Joey loses it again. He walked to our kitchen (for what I have no idea still) and came back to the livingroom angry. He starts his rants about everything again. This time adding in the rants about us never having money, or having a car, about he doesn’t care about the neighbors upstairs and he will just kill everyone. Again I work on calming him down while deflecting my son Michael (who is Adhd and PDD-NOs) from causing more grief by telling everyone what is the correct and incorrect ways of doing anything. I must say I threatened them with the lose of everything they hold dear. Not a good threat dealing with Joey. He freaked out. He thought I was gonna take away all his coping skills stuff. (I’d be dead before I would ever let anyone do that to him or myself) Finally night arrived. The fight over taking a shower or not began. Of course Joey won that one. He’s 6’3″ tall and weighs about 220. I can not pick him up and put him in the shower anymore.. Daily life skills are the hardest thing for Joey. After the battle of wills about the shower, it was the battle of wills on medicine. I must say I am excellent at winning that one. I won’t give up and I think he knows that. An hour later my house is quiet as all three of my lovely sons are fast asleep and only my night owl teenage daughter is up talking to her friends. Most nights like Saturday I lay in bed replaying the day wondering.. Was my choices right? Did I screw something up more? Are the kids safe? So that was my Saturday. Sunday ran along the same lines. Though for some reasons all three boys thought it was bash mommy day. And I heard everything I do wrong. Main one being I don’t have a job. They sounded like they were repeating everything thier fathers ever said about me.
Anyways Back to why I love Mondays. Monday morning while the kids drag a little they all get ready and go to school. For the next week its peaceful but busy time between 7:50 am and 2:45 pm. I have a lot of things to do while the kids are at school. I have to clean my house. Continue to do what I can online to make money. Deal with more government paperwork to make sure Joey gets on the waiting lists for different programs to help with his life skills. Call therapists, email teachers.. the list just go on. But while im doing that I’m not trying to keep WWIII from breaking out in my house.
While I am doing all I must do, Joey is in his routine at school. He does good in that routine also. He takes a shower there between first and second period. He has teachers and aides that assist him through out the day. Schools are very structured and for Joey its calming. After school its mostly steady around the house. Some days can be bad but for the most part we have a strict schedule that helps keep Joey calm.
So bring on Monday mornings and the time to rejuice my engines…