Phone calls

Our son, Thomas has been calling us lately from school.  I don’t think we called him once, but he’s called us just about every evening with the exception of 2 evenings I believe.  And last night get this, he only wanted to talk to me.  It was really sweet.  Not a deep conversation mind you but he wanted *me*.  This is a big deal, for me at least because when he’s home and starts to get comfortable, Thomas starts sliding backwards towards behavior that landed him in the residential school to begin with.  So to have him say, “No Mom, I want to talk to you”  when I asked him if he wanted to talk to his father, is really sweet and just reinforces that he does love me.  Yes I know he always loves me but it’s difficult to logically tell yourself this when this sweet boy is giving me dirty looks for no reason.

When Thomas returned to school after Christmas, I was ready to have him go back but felt so guilty about feeling that way. Fast forward 2 days and Thomas calls us from school sounding so good, so comfortable, so at home…it was amazing. That really took the sting out of him going back and took some of the guilt away. After talking to Thomas last night it made me want to visit him even more. Tommy and I were discussing the best day/time earlier. But I have to bring the boy socks. He kills me. Thomas insisted he only has one pair (I find this hard to believe) and that we have to bring him socks when we visit. I called the social worker and she promised to look into the sock issue. Regardless, we’ll still bring him socks, why not?

The Mall

I was in the mall with our youngest, Samantha and I noticed a young man holding the arm of another young man. I looked again and noticed it was an outing of special needs young adults. Sometimes seeing this makes me sad. Not because the people are special needs, but because my special needs young adult goes on these outings without me.

Before everything fell apart when we changed medications (due to low white blood cell counts caused by one med), I had a picture and plan of what our lives would be like. It all seemed to be fitting into place. Thomas was in a great school, we both adored the staff, he was a part of great recreation programs and Thomas was on the waiting list for group homes once a space became available after he turned 18.

Don’t get me wrong I’m incredibly grateful for the school Thomas attends now and I know we couldn’t continue to live the way we did any longer. I know all this logically. However logic and emotion usually don’t reside together, not in my mind anyway. It’s not all the time that I get sad, just here and there. I guess I feel sorry for myself and that sounds terrible, to me anyway. I don’t like pity parties. When I see these young adults I remember “the plan” and how it’s no longer viable. Then I remember that I was never in charge anyway. God is and He has his own plan. One I am not necessarily privy to. I have to trust in Him.

As much as I mourn the change of my plan, I do enjoy the quiet environment of my home these days. It’s not always “quiet”, there are 3 girls living here, one a teen and one a pre-teen. But it’s not chaotic either. And I’m not emotionally exhausted trying to keep everyone peaceful and myself safe. It’s kind of a sucky trade off to see my son turn into someone I would fear, but God will use this for his glory. I know he will.

There are some things I miss so much about when Thomas was stable on that particular medication. I will never forget one time, about 3 years ago, right before we had to stop the one medication. Thomas and I were in Manhattan to see his psychiatrist. Saks Fifth Avenue was a few blocks from the doctor’s office and my husband had just informed me I could purchase my dream handbag. There was a boutique in Saks. Thomas and I get there and he helped me pick out some bags to try on. The whole time asking me, “You gonna buy it Mom?”. Meanwhile I was overwhelmed and hyperventilating as I never in a million years saw myself buying this designer handbag. I went outside to call my husband and ask him if I could but it there at Saks without him present. It took a while to get him on the cell phone so Thomas and I walked to a find a pretzel vendor. Just as we found a pretzel guy, Tommy called back and said to get the bag, to open a Saks account as I didn’t have our major credit card with me. I told Thomas I was getting the bag and he practically ran back to Saks! I had to keep up with him, lol! Thomas was walking so fast saying “Excuse me, my Mom’s getting that bag!”. We arrive back at Saks and the salesman was so great to Thomas. He didn’t patronize him. Thomas pointed to the bag and confidently said, “That one, my mom’s buying it!”. Unfortunately I was unable to open a Saks account as I didn’t have my major credit card with me. Arrgghhhh!!!! I tried to explain that if I had the credit card I wouldn’t need to open the Saks account. They wouldn’t budge so I had to explain to Thomas that I didn’t have the right card but I will get the bag another time. I’m not sure who was more disappointed him or me.

About 2 weeks later I made my way to The Mall at Short Hills in NJ. Tommy couldn’t come as Samantha was sick. You know Thomas came with me, I had to have him come along to purchase “The Bag”. The whole experience wouldn’t have been the same without him

The Sail School

So after finding out there was another boy vying for this one open space, Tommy and I were frustrated. We came home and I called Cheryl, the Pastors wife and she prayed for us. About a week or so later Admissions Woman called and made an appointment to bring Thomas up to the school. To say we were hopeful is an understatement.

We arrive and we were met by Admissions Woman and another staff member. For the life of me I can’t remember her name or title. They did a mini assessment of Thomas, asked a few questions and then they asked Tommy to take Thomas out of the room so they could talk to me. It was then I was informed that the other boy had filled the available opening. My face froze, I didn’t know what to say. All I thought of was now I have to explain this to my husband. That he took a day off work for nothing. I couldnt speak, couldn’t even ask them why they had us come there knowing there were no open spots? I thanked them for their time and headed to my husband and son, both waiting in the car. I told Tommy and he was angry. I didn’t blame him. This was in May, 2012.

Fast forward to June, 2012. Admissions woman calls me and says there will be an anticipated opening the end of June. Praise God and endless thanks to our church family for all their prayers. This is perfect timing because Thomas was just admitted to the hospital for aggression towards me. I was given an estimated date of admission to the school. Thomas was discharged from the hospital and we had 2 weeks to get through before the admission to the Sail school. We tried to prepare Thomas the best we could he already knew what is was like to live at a school away from home. My heart hurt even though I knew we couldn’t go on living like this. Thomas went to bed and I stayed with him until he went to sleep, staring at this young man, my child, my first. I cried.

Once again I had to mark my son’s clothes and socks with his initials. I don’t remember much except I did it. The day of admission arrived and I went alone with Thomas. Tommy had to work, he was the only person I would have wanted to go with. I didn’t want to make small talk with anyone or talk period. It was a Thursday. I left the house around 2 pm and there was decent traffic on the George Washington Bridge. It took us at least another hour to arrive. We were late.

When we entered the Sail school we were met by a staff manager, Admissions Woman, and the nurse. Everyone was wonderful. Thomas refused to leave my side for a look around or a tour. I had a ton of paperwork to read and sign, make sure they had his IEP for school, make sure they know due to his meds Thomas needs sunscreen, etc… After a while Thomas grew bored and agreed to go outside to the playground with a staff member. Before I could speak the word “sunscreen” the staff had already put it on Thomas.

One of the hardest things I had to do was give the Nurse Thomas’ meds. I handed over his clothes with no problem but to hand over the medications was really laying down and admitting I couldn’t have him at home anymore. To me handing over his meds was the equivalent of handing them my son and with him my complete trust. The nurse was wonderful and understood when I told her how difficult this was.

After a while there was nothing left to do but go home. All the papers were signed, they had his meds, I gave the school the history they wanted…it was time to leave. I said goodbye to Thomas. He became upset and started crying, I held back tears and after many hugs and goodbyes I left. I ran to my car crying. I sat there. I called Tommy but I don’t remember what we said to each other. After I calmed down I drove home, by myself and I listened to Christian contemporary music.

The next day my stomach became upset and I was sick for 3 days. I cried and cried those 3 days. The Lord was with me as he made sure the girls stayed occupied so I could be sick and cry in peace.


Off Meds!!

Thomas was discharged shortly before Christmas.  I mentioned the doctors in the hospital had stopped the meds that control aggression and lowered the dose of the mood stabilizing medication.  The Christmas holiday went well, I was looking forward to the holiday and the kids enjoying new toys to keep them busy during the school break, yet I was so worried about Thomas and the meds being discontinued.  Tommy had to work, he had already taken unexpected time off to attend meetings and visit Thomas while he was hospitalized.  

I remember the day after Christmas was when Thomas started acting odd.  It was around 11am and he refused to get dressed.  I had no real plans to go out or anything but we’re not a “stay in your pajamas all day” kind of family (unless you’re sick).  Instead of getting dressed Thomas took off his pajama shirt and walked around in his pajama pants with no socks and cleaned my dining room table over and over and over.  I didn’t know what to make of this.  He kept scrubbing the tile top table, go back in the kitchen to rinse out the sponge and start over again.  I may have gotten him to eat lunch and then get dressed but he cleaned my table for a good hour I’d say. He also became very worried about how his things were in his room.  Shoes had to be lined up just so, no one was permitted to move his shoes unless Thomas himself were the one moving them.  I wondered if he was developing OCD now??  Turns out this behavior was anxiety related to the mood disorder that wasn’t being treated appropriately now that the meds were all “off”

The next few days are a blur of wild behavior from Thomas. He was not aggressive towards the girls at all. But he didn’t know what to do with himself. I asked my parents to come over to help me out not that any of us knew what to do. At least the company was nice. When my parents were here Thomas started running around the house. Our house is the type where you can walk in a circle: living room, kitchen, dining room; back to the living room. He ran this route over and over and over. My Dad and I just watched in amazement and worry, why?? Finally my Dad caught Thomas on his way around. He seemed to be on a happy mission to run and determined to do so. I remember my mom talking to him and she managed to stop the running.

On December 30: I only remember the date because the next day was New Year’s Eve, Tommy was home so this must have been after work/late afternoon. Thomas started having a fit and came after me hitting and punching me. I have no idea what started it but Thomas then grabbed the silverware drawer and pulled the whole thing out from the kitchen base cabinet. Crash! The drawer fell to the floor. I remember the girls were in the living room and stayed there. Thomas then ran to the other side of the kitchen and Tommy caught him for fear he would hit me again. My son’s eyes were glassy and he was so, so angry and upset. He hit Tommy repeatedly and thrashed around trying to escape his father’s hold on him. We didn’t know what to do. I did not want to call an ambulance as I had no faith in the psychiatric units at our local hospitals, we had no doctors orders to give any meds to calm him down and Dr.F was still on vacation. We had called the hospital that discharged him and they said to “bring him back”.

Finally with Tommy holding him, Thomas calmed down enough for Tommy to get him ready for bed. We talked things over and decided this couldn’t go on, tomorrow I would bring Thomas back to the hospital that just discharged him. It was a safety issue for our whole family. I called a close friend who lived in that area and asked her to meet me there, that I had to take Thomas back to the hospital and they told me to go through the ER. My friend, Diane has experience in this behavior with her own son so I knew she would be wonderful to have with me. Once again God provided, he always does.