Autism Does Not Mean Stupid

My son Thomas has autism.

When Thomas was 3 1/2 years old he was diagnosed with "high functioning" classic autism.  I wanted to cry, I wanted to scream, and I wanted to hold my baby tight and yell at the world that "He's still MY Little!"

Thomas was placed in a special pre-school class and received Speech Therapy for receptive and expressive language.  We found he had a number of sensory difficulties, and was especially photo-sensitive.  At one point when we lived in Virginia, he was a Project LifeSaver kid through the sheriff's department because of his wanderings.

Through everything, if anyone asked me what I liked best about Thomas, I would say "his heart".  There is something about the boy that makes your heart melt.  He loves everyone.  And, even if he can't necessarily stand to be hugged, you know he loves people.

But, through it all, Thomas was never not intellectually there.  He may vacate out into an absence seizure, or twirl a little and click his tongue.  He may emotionally seem a little closer to a child half his age, but he has always been so very smart.  At school, he moved from having an Individual Educational Plan (IEP) to having nothing while I fought to get him a 504 plan.  He received his 504 plan last year.  He needs extra time on tests, and has trouble with his ability to write legibly.  His short term memory can be a bit faulty, and he is very consistent about not remembering that he has homework too.  After all, the teacher didn't say "Thomas, you need to do pages 10, 11 and 12 tonight", she just said "Do pages 10, 11 and 12" not who was supposed to do them.

Something happened today.

Today, Grandma took him to school to meet his new teacher and find out where his classroom is.  Turns out, that the Thomman is not in a normal class this year.  He will not be with all the other "normal" mainstream kids this year studying along at what he consider's an easy pace.

No, Thomas has been moved to the 5th grade gifted class!

His most recent teacher recognized that this kid is smart! Not just run of the mill smart, but really very intelligent!  It doesn't matter if he does click his tongue in class, or needs extra time to write his work because it can be physically painful.  It doesn't matter that he has to wear tinted glasses to keep the room in shadows or that he needs his teacher to sign off that he actually has homework.

I am so proud of my son Thomas!

We'd have a special dinner for him tonight ... I was thinking ice cream and cake, but I know that would upset him and he'd say we skipped dinner.  So, looks like Mac-n-Cheese followed by a healthy serving of ice cream!

Dealing with the "System"

I hate admitting it, but it's true.

My kids are on Medicaid.  I can't afford insurance and my employer doesn't offer any.  Once upon a time I had good insurance, but those days are long gone.

It took me forever to get them finally covered, months with knowing you can't take afford a doctor is devastating.  It makes you feel like you are a horrid parent.

Everyone says that there is all this help out there.  Well, I don't know where, because I've certainly run upon roadblock upon roadblock.

Today, once again I tried to make my youngest son an appointment with a pediatrician.  I need to take him to the doctor.  He's healthy right now.  I think.  I don't know.  You don't always know what's going on with autism.  For you "autie" parents out there, you understand what I am saying.  Now, imagine, my son hasn't seen a single doctor since January.  For a child with special needs that is too long.  The last time he was to the doctor was for chicken pox.  (Yes, he had been vaccinated, and still got a minor case of it.)

The only pediatrician's office I could find won't make an appointment because his previous pediatrician has yet to transfer the records.  This is after I waited over a month while trying to sort out the whole Medicaid business.  Medicaid was saying they had insurance, too bad they didn't.  So, I sit and wait again.  Knowing, wondering, is he okay?  I know he's been zoning out more lately.  I know he seems to have trouble hearing as well.  I really want these things looked at.  But, alas, I find myself facing that horrid truth.  I jumped through all their hoops so that my children would have the coverage, and I still can't get them in to see a pediatrician.

The system is broken.  I am a working mom.  I work hard.  I try my best to take care of my children.  But, I can't afford to do it all.  I wish I could.  I make just enough money that I personally get no coverage, and just enough that I will get fined for not having coverage, yet not enough to be able to afford any coverage for myself.

The thing is, I could "use" the system and take "advantage" of the system.  But, I refuse.  I will not lie.  I will not quit my job and live totally off of it.  I will not go out and find a lesser position with no future so that I can have coverage.

This economy and everything I have seen over the past number of years has taught me to swallow my pride.  So, I do.  But, the last piece of pride I refuse to give up is the pride in knowing I have tried.  I know I have tried to work a decent job so I can afford to take care of my children.  One day I hope to be back to where I don't need the help.  I dream of that day.  I know I will reach it, but for now I need a helping hand.  I used to think that the "system" was there for people who needed it, that it was supposed to be a way to help out in times of trouble.  Now, I know that too often, the only way you get the help is if you stop trying to better yourself and your family and accept that you are a "nobody", a "bottom feeder", and "not worth anything better".

Problem is, I can't accept that.  So, I will wonder, why?  Why is the system so broke that when someone needs the help that they can't get it?  Why do you have to stop trying to better yourself and pull yourself back up on your feet to get "help"?

It is only too true, that in some ways the "system" rewards people for not trying.  If I made just a little less money, I could qualify for food stamps for my family.  If I make less I could receive coverage too through the state and would be able to see a much needed doctor.  If I made less money, even if I didn't receive state coverage for me, I could afford a periodic doctor visit for myself, if only I made less money, took a lesser job than what I can do, and took advantage of the "system" as it stands.  Too bad that is not in my personality to do.  This is a challenge too many people face today.

We need to make changes to the system.  We need to make sure that this inbetween stage of not completely poverty, but not "middle class" is given assistance to bring themselves to a point where they can take care of their families.  It shouldn't be an all or nothing prospect.

Bipolar Relationship

When you are in a relationship with someone who is bipolar the feelings of being overwhelmed can be so intense.  There are those happy times when everything is good.  Or, so it seems.  You try to always look on the good side, the happy things.

These past couple weeks have been a real eye opener for me.  Everything depends on me.  It felt like it did before, but now, it's even more so.  When Tony was around, I could talk to him.  He may not always understand, and he always had that twist that everything was fine and would work out.  But, he's not here.  I can talk to him once a day for 15 minutes on the phone.  During that time, he doesn't want to hear the bad or that I can't make it here.  He only wants to hear how I will be sitting here waiting for him.  That I will take every penny I can find and give it to rent so that maybe we will have a place to live in another couple months.
My logical brain is screaming.  NO!!!!  If I put every cent I can into rent, then maybe, just maybe there will be enough.  That is if I can sell all these lizards, and somehow potty train a 2 year old (including night-time), oh, and that we don't need anything like toilet paper.

Still, I am supposed to clean up this house, pack up everything I can, sell everything I can, take care of the kids, all the while being the good other half and keeping up the smiling face.  Oh, don't forget to make calls, figure out what's going on with everything, and do all this alone.

Ah, I'm sure you are now thinking, why doesn't she just leave?  Why did she stay so long?  That's hard to answer all the time.  Perhaps I have a dependent personality.  I don't know.  Maybe my rose colored glasses got painted over instead of just tinted.  But, Tony is a loving father to the children.  I believe in keeping family together if at all possible.  I have a strong conviction that mental illness is not so much different from medical illness.  You wouldn't leave someone because they were medically sick?  Is it wrong to leave them because they are mentally ill?

I don't have the strength or energy to take care of him, and our family, and I failed miserably at trying to do it.   I feel that I am the one who failed because I couldn't catch all the manic episodes.  I cannot blame him for being bipolar.  Still, I couldn't make him take his meds all the time or follow-up with the doctors he needed to.  I couldn't control him finding ways to spend money on things we didn't need.  I couldn't help but want to believe that I could trust him to tell me the truth always.  Too bad, bipolar can be so delusional.

Unfortunately, the delusions of someone who is bipolar can effect everyone around them.  You will want to believe them, and that it is reality.  Instead, you can't.  I do love Tony with all my heart.  But, my mind knows I cannot trust the bipolar.

Bipolar Consquences

Those who know me know that I consider mental health issues the same as someone may consider any other medical issue.  Still, there are consequences.  Even with medical issues, if you do something you shouldn't there are consequences.  The same goes for mental health problems.  Bipolar is not a free pass, the price must be paid for actions and inactions.  And, sometimes that price is steep.

Often my experience has been that the consequences are bad credit, no money left in accounts, and constant battles over priorities.  The consequences go far beyond that though.  They lead to loved ones having feelings of being overwhelmed.  And, sometimes, that very overwhelming feeling forces loved ones to have to face decisions that they don't want to make.

I love my Tony, my other half.  That is not in dispute.  He is a good man and a loving father.  He is also bipolar.  He has abrupt mood swings, and is a spendthrift.  He doesn't think about what he's spending.  And, all too often, there is nothing to show for the money that disappears.  There is always a way in his mind to pay for the necessities.  

Consequences have a way of catching up on a person.  Today, Tony, is in jail.  Yikes!  Did she just say that?  Yes, I did.  Several years ago, Tony got himself in trouble.  I'm not going to go into what happened, that is not for me to say, needless to say, he received probation and was sent on his merry way.  He just had to follow the probation guidelines and everything would be okay.  The probation should have been over years ago.  I thought it was.  He told me it was.  He even had been pulled over for speeding and everything was okay.  Or, so I thought.  Tony forgot that he didn't follow the requirements of his probation, and the results are he had to go spend some time in the county jail.  Not a good place for anyone.   Let's add to that he let his prescription lapse and hasn't seen his doctor lately so he is without his medication.

Now, our family has to pay the price.  The price is high.  Not only are we without Tony, who watched the kids so that I could work, but it turns out that he had just begun another manic episode.  This incident actually helped catch the episode so some of it can be taken care of and damage mitigated.  But, not all the damage can be undone.  Ahhhh... those pesky consequences again.

I am about to start on a journey to try to stop further damage and try (once again) to put some more structures in place to prevent damage in the future.  In the meantime, I have to determine what I need to do to keep the family safe and sound.  To keep us healthy and happy.  It's not easy to sit and wonder what to do, or even how to do it.

The Job Hunt, Depression and Bipolar

I'm depressed. It took me a bit to realize it. It's situational depression and I understand that. I need a job. I need to be able to support my family. I want to work, but I don't want to do it anymore.

I want to work to keep a roof over my family's head. I want to be able to enjoy things and do things again. But, I'm tired. My other half is bipolar. So, even though I have worked and worked and actually made a decent salary, the last two years of me working I didn't see the money. Bills were always behind, rent was behind, and the checking account was overdrawn so often that I stopped even looking at it. I was working, but for nothing. Well, I was working for something, to pay back the bank for all the bounces.

I am not a check bouncer. I am fanatic, but Tony, it didn't always click to. He'd think the money was there, or that we needed this or that, and the money would be gone. Then, electric would need paid, or something was needed and the card would be at it again, only this time bouncing. My bank card seemed to be made of rubber. If there was $100 in the account, it wouldn't occur to Tony that we needed to save that for the next few days until the paycheck hit. He would spend it. It became a never ending cycle. Then I was laid off. Somehow being laid off was a bit of a relief. I don't have to do it anymore. I'm not the one it all depends on. He was able to find a job to start in a few days, and I could be the one at home. I could get the house clean and organized. I could spend time with the kids that I never had been able to.

I was scared and nervous, but I was up to the challenge. Tony started work and he was happy again. He was able to do what he loved doing so much. He was Chef Tony again. I'd stay up every night until he got home from work to put his one chef jacket in the laundry. I'd wake up every morning before the kids had to be up for school and put his jacket in the dryer so it would be clean and ready for him to leave by 10:30 AM. I would spend time with him until he left for work. He didn't like me running around the house cleaning when he was home. He liked me to hang out and spend time with him. Just the two of us. Then, I'd get to work. I'd clean and sort and organize. I'd spend time with our little girl.

Then, it started. Tony's manager was fired and replaced with someone new. Tony started coming home upset. The new manager was a front of house guy and didn't understand how a kitchen worked. The new manager wanted to use powdered chicken stock that contained MSG in the vegetable soup. The new manager grabbed his butt (Tony used different language). All of this was happening at the same time as he never got paid on time. Every paycheck was at least a week late. One paycheck was $500 short.

Tony got fired. The Sunday after Thanksgiving his brakes went out on the van. He called and told them he would be late. In exchange he was fired.

We had finally been getting on track. I had cashed out my 401K to pay the back rent. I didn't have much, but it was enough to bring us to only owing the current month. My savings were all gone. My 401K was all I had left and now it was gone too. It then took nearly a month for him to get paid for his last two weeks.

I was able to do some gardening for the retired teacher across the street. Two weeks before Christmas I was paid just enough to finish paying off December's rent. I was thrilled. Utilities were paid, rent was paid, and thanks to the generosity of others and my mini endeavours, we had gift cards to buy Christmas gifts for the kids.

As soon as Tony was fired in the end of November, I had started applying for jobs. I admit it, I wasn't very proactive. I didn't apply for as many as I should have, but I was putting in an effort. I hoped that Tony would find something. I didn't want to give up being a stay at home mom. I wasn't good at it yet, but I was getting better.

We have just enough money to pay January rent, and we will be doing that as soon as the moneys clear the bank. What are we going to do for utilities, I am not sure. We should have just enough to make it through the month. After that, I don't know what will happen.

So, I am depressed. I need a job, and I want to work, but I don't want it to be for nothing. I hate bipolar. I hate the fact that it means that I feel exhausted from the mood swings and overspending. I hate the fact that it means that I feel the success or downfall of our family falls on my shoulders. I'm not bipolar but I suffer the consequences of loving someone with bipolar and wanting to keep our family together and intact.