January 17, 2014 Big Steps - My blog post


#1

January 17, 2014 Big Steps
My son took a big step yesterday. Well, he was nicely pushed into it but still he is willing to try and for that I am so proud of him. He has been a part of early intervention programs for the past three years and usually that is the time frame for early intervention program. They help you for three years. He is hesitant to go into the next program as he is comfortable with and likes his current support workers. It is sad for me too as I will also lose my support worker and it also means a new psychiatrist. But this next program has a lot more support. Workers that can actually pick him up and take him to appointments. Meet with him several times a week if needed. It is also security for me that if something happens to me then right away there are people that can step in and help day to day so that his stability is not put into jeopardy. Soon things may get stressful for him as I will be pushing for him to start getting his high school equivalent. I have tried being teacher in the past and I don’t want that stress between us again when we are doing so good. I just want to be mom. As much as he doesn’t feel that he will continue to need such support within the next 3-6 months he gracefully gave in and agreed to give PACT (The program) a try for a month. I agreed that during that time I will not push schooling to give him a chance to get to know them before things get stressful again. We both have some changing to do and a world to become a part of. I need to get back to work as well. So as great as things are right now I will do my best to ensure that 6 months from now we have progressed into something even better. I told him to take advantage of the help that is being offered because most of us have to do these things on our own with very little support. When I start looking for a new job it will be scary for me too. New company, new people and I will have to do it on my own. He will have someone help him every step of the way. He should never have to switch programs again so if he needs them 3 months or even 3 or 6 years down the road they will be there.

The last couple of days have been a little stressful for my son. His best friend who lives across the hall, the one I’ve began to look at as a crutch instead of a positive, does not seem to be doing too good. He also has a MI and drinks and smokes pot. Well two days ago while under the influence he decided to physically go at my son. Hit him a bunch of times, once in the face, so my son hit him back, once, to stop him. Well the friend got hurt and called the paramedics. Now he is trying to say that he was only play fighting and that my son should not have hurt him. This is not the first time that this friend has tried to be macho with my son and got hurt in the process. He didn’t come at my son in a playful matter. My son felt assaulted. So now he is guilt tripping my son. All I can do is tell my son to try and stay away from him and the next time this friend is at my door and I already warned my son that I will be doing this. I will be making it clear to him that if he can’t handle it then don’t start it. You can’t go around hitting people and expect them to not react or defend themselves.

On another good note. I got a message today from someone thanking me and letting me know that they get comfort from my posts. Messages like this make it even more worth it. It’s like icing on the cake. I’m so grateful that my journey with my son can help others to not feel so alone.


#2

I am so glad to hear that today is better then yesterday and tomorrow will be better then today. You have worked so hard to get to this point. I am so glad you have a chance to see the positive results of all your hard work.

I’m so happy for you both. This is excellent news. I’m hoping your son stays away from this “friend” a little more now. With your son getting more support from the PACT team, they might be able to reinforce that this friend isn’t really helping him right now. The fact you feel comfortable enough to start to get back into the workforce is also a good thing.

I hope you do know how much your calm wisdom has talked me off a panic ledge many times this past winter. I am really glad this step forward is coming your way.


#3

Helping you and your sister has been nothing but a pleasure for me.


#4

Barbie, I also wanted to thank you for your positive posts. I have been reading but not responding since I had not yet logged in after the format change.

My son was diagnosed about 4 years ago; he has sza disorder and is currently on Invega.

Last year he finally went to a Vocational Rehab councilor in hopes they would help him find a job. This was my idea. He spent that year pretty manic probably because his current med wasn’t working well. This councilor told him about a school about 3 hours away which he would be eligible for. I was happy for him to return to school but doubted he could handle being away from us so totally.

Long story short, he went anyways. He opted for a 5 semester stint, at the end of which he would have earned an Associates Degree.

Shortly after arriving last fall he became unraveled to the point that I was sure they would expel him. But instead they required him to see the psychiatrist and to show up every evening in the office to take his meds in front of someone.

He needs contact with me daily…we do this my instant messenger and sometimes by phone. He doesn’t do very well in the winter and the frigid weather freaks him out. I guess we take it one day at a time.

He is struggling very hard right now but seems (usually, anyways) to be on top of things. He is taking mechanical drafting and the work is getting more challenging. It is good for him, however. Before he got sick he had already completed a Bachelor of Arts degree in (what else) Psychology.

I highly doubt he would actually be able to find an employer who would work with his condition, but at least he is doing something he can be proud of. We take one day at a time.

I do appreciate reading your posts, and just wanted to share my story.

Morgan


#5

Thank you for sharing your story and for the positive feedback.

I’m glad to hear that the school psychiatrist is working with him and helping him with his medications. I think that is really cool.

No matter how old they get or where they are they will always be our little ones. Good for you on keeping contact daily. It may be challenging but he is doing it! Yah for him!

I think there are a lot of people or employers out there more understanding than we know. If he can handle getting the degree I would have faith that he can handle the job.


#6

I hope you don’t mind me jumping in on this one. I am so glad to hear of how well your son is doing. Our collective prognosis is getting better and better I feel.

My boss does know of my Sz and as long as I try to be patient and keep him in the loop and do my best when I’m well, he tries to give me flexible work week and structure I need. There are a lot of people on this thread who are employed long term. Employers are getting more open. I have every faith that your son will be able to profit from his highly demanded skills.

Congratulations to both of you for all that hard work and strength and ability to support each other.


#7

No Surprised, I am very gratified to have your input, As far as my son’s situation is concerned, I was stunned that the people at his school stepped up to the plate and required him to take his medications as long as he was at the school I guess I’m so used to him being treated like he didn’t matter.

I wonder out loud how we would be able to find such employers.

I am so proud of my son for his strength in coping with his illness. This is a bad time for him, with the winter and cold. It really has a negative impact on his moods. He becomes fearful and very unsettled.

For the time being, I support him through instant messenger. He likes this mode of communication. He is a bit afraid he won’t be able to do the work as it gets more challenging, and he needs daily positive feedback, it seems. He is studying mechanical drafting. May I ask what employment you have found?

Thank you for your positive reply.


#8

He is doing better then I was. I’m going to be 29 in less then a month. I didn’t get my GED until I was in hospital. I had a lot of mental glitch way back as a toddler, my head circus was in full swing by 11. My head exploded when I was 17 and I ended up in hospital. College didn’t come my way. I was relearning how not to lick the walls and keep my pants on.

I got a job as a janitor through a day hospital and then got hired on with a city community center and became a pool operator and janitor. (I cleaned the restrooms and kept the pool blue and circulating.)

Then when I got better still I switched over to the park’s side of park’s and rec. Worked my way up from grunt maintenance to parks planning and landscaping. I work with the city and we make parks. I still get to be in the field and do some of the hands on stuff like the actual planting and greenhouse work and arbor work.

But I also like the planning side of where to put a park, is it going to be a community garden, a green break, a dog park, a kid park, a play field, a preservation of open space…

But, It’s NOT just me. There are many many of us in the department. I’ve JUST started school this quarter to get my degree in horticulture so I can get further up the ladder still, or maybe sideways on the ladder to Greenhouse management and species development. The journey is not over.

Now that I’m learning a bit more about myself and becoming more aware, I’ve come to realize that I DO have some seasonal affective disorder (SAD) mixed in to my head circus. Light therapy has been helping more then I used to give it credit for. (I used to think it was hooey) But I ended up with a light lamp and some education and therapy for SAD and this winter was no where near as bad as last. I’m doing really well compared to last winter.

If he’s good at what he does, he doesn’t have to tell anyone about his MI if he doesn’t want to. If he’s good at what he does, people will search him out. My original boss knew because I came to them through a hospital program. But after that no one knew unless I told them. I did tell this boss and he has been very cool with me.
When I told him he just sort of paused and then said. "I’m sorry, but I have no idea what that really means."
So he had no preconceived notions of homicidal maniacs or violent gunmen.

He knows I can’t just take a huge chunk of info in a two hour block of a meeting and I know he can’t take pages and pages of notes that I leave him. (he’s dyslexic) I’m more visual and he’s more audio. Any job with a good human resource department can really work wonders and help an employer/employee relationship.

I have a feeling people are going to start getting better about SZ education. I’m glad the school is being supportive to your son. I don’t think anyone is going to treat him like he doesn’t matter anymore.
If he is in college away from you and getting through his day and has this future to look forward to…

You have a lot to be proud of. Your hard work and support has paid off.