special needs

Hospitals and People Placed In Our Lives

MenayOLeave a comment

After Thomas was discharged and we left the local hospital, I spoke to Dr. F.  He wanted to hospitalize Thomas at the hospital we used many years ago when Thomas was 7-8 yrs old, before Andrus.  Dr. F felt there was no safe way to taper off this med and begin a trial of a replacement while at home.  Tommy and I agreed but we were not happy about it.  Thomas’ behavior had leveled off, he was still taking the medication that needed to be stopped and we feared he would view being hospitalized as a punishment. I did not hold my son’s actions towards me as a grudge nor was I angry with him. Was it horrible? Yes. But he is my son and he has brain issues that cause him to act out if he is not medicated properly. We explained why he had to be admitted and thankfully he understood.

I took Thomas to Westchester, 2 hours away to be admitted to the psych hospital. I told the admitting psychiatrist why we were there, to stop the medication affecting the white blood cells and hopefully replace it with something else. I asked him to please call Dr. F and discuss this with him. The hospital Dr. did at some point in time do so and he agreed to the med change.

Thomas was in the hospital for about 6 weeks. They did not take him off the medication we wanted because Thomas’ behavior would worsen with each tapering down of the dose, and his white blood cells were in the normal range so their decision was to keep him on that med. As happy as we were to have him home, it was a waste of time to have had him hospitalized. I warned the hospital Dr that we’ve been through this and I knew Thomas’ white blood cells were going to drop again. And they did.

Dr. F decided to take Thomas off the med at home (again) and hope for the best and we could always hospitalize him again. I don’t remember much about that time except I know it didn’t go well and Thomas was hospitalized again and again. It became a revolving door situation. I was the target of his aggression, not once did he hit the girls. In some strange way when I told the professionsals that “I” was Thomas’ target and not the girls, it seemed “ok”. I won’t go into fine details but his aggression sent me spiraling into depression and it was the cause of great trauma to me.

However The Lord again shows himself when I was in need. During one admission the hospital was having a meeting about Thomas and a parent had to attend. Tommy was working so I’m the one. Tommy didn’t want me to drive alone but I didn’t have anyone to go with me. I was about to call the church and ask but decided to go shopping at Macy’s instead. In the middle of Macy’s I run into Cheryl, one of the Pastor’s wife. We had met before and chatted since they have a special needs son now an adult. I tell Cheryl about the meeting and I need someone to come with me. Cheryl quickly says, “When is the meeting?” I tell her, “Thursday”. Cheryl says, “Thursday is fine I’ll come with you”. I almost fell over right there in Macy’s. That was no coincidence, nope. She gave up her whole day and drove 2’hours there and back with me not once but twice. Yes people are placed in our lives for a reason.

A New Normal

MenayOLeave a comment

After admitting Thomas to Andrus things were not the same at home as one could well imagine.  I know I missed him.  I didn’t miss his behavior but I missed him. I missed Thomas being in my house, I missed my son. I know Tommy was going through his own grieving and missing Thomas. I don’t remember us talking much about how we felt at least not to each other, it was too hard. We knew why the other was in a “mood” or quiet or grumpy. We tried so hard not to take it out on each other and give the other space until we were able to talk this out. We knew all we had was each other, I was the only one in his world who knew how he felt and he was the only person in my world who knew how I felt. That’s not to say we didn’t get snippy here and there, please…no one is perfect.

The girls settled in to the new quiet house rather seamlessly. Funny how we went from constant state of chaos and not knowing when the next outburst would come to this dare I say, “typical” and predictable household. Yes the girls fought and bickered but it was so textbook, they were doing what they were supposed to do, not witnessing their brother be out of control.

I remember feeling like a fraud when I went out with Alyssa and Daniella. Like I was incomplete or missing something because Thomas wasn’t with us. Don’t get me wrong outings such as going to the zoo, shopping, even a trip to the corner store were now a heck of a lot easier. It felt odd though, like I was playing “pretend” in a life I was presenting to the public that was not the truth. I had 3 children not 2! So many times I wanted to yell, I also have a son! When people would see the girls and I out together and smile. I felt like a liar.

Andrus had rules for visits. I can’t remember exactely but I think it was no home visits for a month or so to encourage Thomas to acclimate to Andrus. I think my son is amazing and truely gifted by God in resilience. He allowed us to leave when he was admitted to Andrus. Plenty of tears mind you but he didn’t physically cling to us or scream or make it harder than it had to be on him or us. He also acclimated to Andrus in a remarkable way, he stepped right into the routine and loved wearing a uniform to school (Andrus is a private school that accepts payment from the NYC Bd. of Ed.). I was and still am in awe of this amazing gift my son possesses. I remember Thomas’ social worker, John and I discussing this. He too was impressed with Thomas’ ability to adapt.

John was a wonderful social worked, very open and honest. He was was a few years younger than Tommy and I, married with children. Somebody we could definitely relate to and he appreciated my blunt honesty. He was also a person with a positive attitude which to us was a breath of fresh air after all the hospitalizations and different doctors and frustrations we faced the whole year prior. I didn’t recognize before writing this that John was placed in our life by God. There’s no way our pairing was a coincidence or by chance. It was orchestrated and intentional by Him.

Honestly I am amazed and humbled at how The Lord was with us even though I didn’t ask Him to be. The Father’s love doesn’t have to be asked for, it just is.

Life goes on

MenayOLeave a comment

Thomas was accepted to the Andrus school.  Tommy and I were as happy as we could be with this news.  It still meant our son was going to live away from us.  We were so hopeful they would be able to help calm the aggression, help Thomas be more independent, hopefully lead into some sort of vocational training.  Yes I know he was only 8 years old but somewhere inside me I knew he wasn’t going to progress very far academically.  In retrospect The Lord presented me with that truth many years earlier.  

We had the date of admittance and also a list of suggested clothes and how many pairs or socks/underwear, seasonal appropriate clothing only due to lack of storage. We did however need to think ahead as summer can quickly turn to fall and Andrus is an hour north of us. I had purchased Thomas new socks and underwear and sat down on the floor in his room with a permanent marker all set to mark his initials on all his clothing. Writing “T.O.” on every piece of my son’s clothing hurt my heart. I held back tears until they couldn’t be held back anymore. I called Jackie, one of my best friends in Wisconsin for support. I seriously couldn’t believe I was doing this. I felt almost robotic at some points in time. Just doing what I was told, following directions so Thomas would have what he needed because I wasn’t going to be there.

We had already told Thomas about the school and that he would be living there. He was with us when we did all the visits over the summer so he was aware. Thomas walked in on me marking his clothes and he asked why? I explained that the staff would know his clothes because they all had a “T.O.” on them and I reinforced that he was going to live at the school. I remember he seemed okay with all this. I was a mess however.

The day arrived and Tommy and I drove Thomas to Andrus. Alyssa and Daniella came with us. They were able to see the cottage and know where he was going, nothing was to be a mystery. I remember meeting with the medical staff and I felt very defensive. I was instructed to bring with us all of Thomas’ medications. I did so and had to tell the nursing staff not to follow then directions on some of the prescription bottles due to dosages being changed by Dr.F. I knew Thomas’ dosages better than the back of my hand and relayed all of them. I also told the staff to call Dr. F. if they wanted to double check or hear the dosages and meds straight from his mouth. I know workers in this setting see all sorts of situations some are abuse cases and child protection is involved. However it was clear we were an intact family and I couldn’t help being as knowledgable about my son and his meds as I was. It was who I was at that time. I could answer just about anything about my boy concerning his diagnosis, medications, reactions to meds he tried and why they were stopped. You ask it, I could name it. I felt that the staff was looking at me sideways. Maybe I knew more than the average mother, I don’t know. At that time I felt as though every mother should know what I knew if the situation were similar. God gave Thomas to me to take care of and I was trying my best to not let Him down.

It was in the medical building we were to say goodbye to Thomas. It was difficult and tearful and heartbreaking and hard and necessary.