It’s getting real…

Yesterday I received a phone call from the agency that owns the group home that we are interested in for Thomas. They wanted to visit him at his school and also have Thomas visit the group home himself to ensure he is a good match. My heart stopped for a minute. Then I realized I’m nervous for him. This will be a big transition. And I have to say this is the first time I’ve been anxious for Thomas to make such a big change. All the other times he’s had to be living in residential we were in crisis mode. Thomas wasn’t safe to be around. Today he’s a different person, the residential school he’s been in has literally been a Godsend; an answer to prayer for him and us. The Lord made it happen for this school to be “the one” for our family.

I’ve written about this before but when we were waiting for Thomas to be admitted to residential 4 years ago, this school was the only one who called me back. I had been calling all the schools on the “list” where his packet was sent by the Board of Ed. and I was discouraged because either no one was calling me back or the ones that did call me back weren’t appropriate for my son. Things were not pleasant here at home, and Thomas was in and out of the psych hospital. Finally one morning after I dropped Samantha at school and went for a walk I came home to the phone ringing. I didn’t want to answer it but forced myself to. It was the school that was to become Thomas’ home for the next 4 years. Turns out they were looking at IQ scores from years ago and they thought Thomas was too high functioning for them. I quickly corrected their error and they were then reviewing the most current evaluations for Thomas. Long story short, Tommy and I visited the school and we loved it. After a couple of bumps in the road Thomas was admitted and we’ve all been happy with Thomas there for the past 4 years. The staff has been wonderful and attentive, his teacher (the same one since day one) has gone out of his way to encourage only the best from my son.

So now the transition begins. I’m still in awe at how the Lord works. He arranged for Thomas to be placed where he is now and His fingerprints are all over this group home placement. I just happened to mention to my bible study co leader that I was being pressured to accept group home placement in other boroughs. Trish then gave me the phone number of the group home agency, I explained to him our situation and the next thing I knew Tommy and I were visiting a group home 10 minutes from our house! When the Lord has a plan there is nothing that will stand in His way. And the way He orchestrates events is nothing short of mind blowing.

So now things are getting real. There are meetings to be had concerning Thomas’ school placement for his last year of being educated by the Board of Ed. I’m sure they’ll be more than happy to enroll and pay for him to attend public school as opposed to residential school. Things won’t happen overnight, but I’m sure I’ll be surprised at how fast and quick time will pass and I’ll pray for Thomas to make a smooth transition and be as resilient as ever when he moves from one residence to another.

Christmas

My son is home for Christmas. Alyssa and I picked him up this morning and made great time coming home. In addition to the many toys he was given for Christmas from his school, Thomas also has new sneakers he managed to finagle his social worker into buying *right* after Tommy bought him brand new sneakers Thanksgiving weekend. He is charming. I’m so glad Thomas is home. Especially for Christmas. I can’t imagine him not being here. We’ve already set up the batteries in one of the remote controlled cars he received from school. I started thinking about the time we thought Thomas was going to spend Christmas in the psych hospital. That happened about 5 years ago I think.

Thomas had been very aggressive towards me and I finally couldn’t take it anymore and we had him hospitalized I think the beginning of December/end of November. They did some med changes and his behavior stabilized in the hospital like it always did. I was so fortunate to be singing in the choir that year and we were singing for the Live Nativity. Singing in the choir was a life saver for me. My choir family was praying for us.

We made the 2 hour car ride to visit Thomas and attend meetings with the social workers and psychiatrists. I blamed myself for him being hospitalized at this time so close to Christmas. I was thinking I should have initiated it sooner than I did then he would have been discharged earlier. What’s done was done though. The beginning of December melted into the middle of December, the Live Nativity came and went and we were wondering if Thomas was coming home before Christmas. Finally, about 5 days before Christmas we got the call from the social worker that Thomas was indeed spending Christmas in the psych hospital. We were devastated. How was this going to happen?? How were we to spend Christmas morning without one of our children opening gifts? As we were planning and talking about how we were going to make Christmas “happen”, another social worker called 3 days before Christmas to tell us the insurance company decided Thomas should be discharged. I couldn’t believe it. Simply could not. Tommy was beside himself with joy. He drove up as soon as he could to get him. We did have Christmas together and all was “normal”. Thank the Lord.

I’m grateful those days are behind us and we don’t have to worry about whether we’ll all be together for Christmas. I’m grateful for Thomas’ school and that Thomas is able to come home as often as he does, for as long as he does. His school has truly been a blessing.

Revolving Door…

As mentioned in my last post, Thomas was in and out of the hospital.   Admission, med change, discharge.  Rinse and repeat over and over.   We were lost Tommy and I, until the hospital psychiatrist and social worker recommended residential school. We weren’t surprised but it was still a shock. We knew it was our only option. Things could not continue this way, Thomas in and out of the hospital; then when he was home I was the target for his aggression.

There came another instance where I had to call an ambulance. That time they sent at least 4 police cars and then the EMT’S. This all took place one evening in my quiet neighborhood. I couldn’t stop crying and once again God stepped in. He is amazing. I needed someone to watch Samantha our youngest. My neighbor’s 18 yr old daughter was sitting on her front steps. I walked across the street and handed Samantha over to Meg and said, “Your Mom has my number tell her to call me.” Meg didn’t bat an eye, she nodded and walked to her house with my daughter. Alyssa was out with friends and Daniella was with another neighbor’s daughter and baby sitter. I saw the Dad and panicked saying, “Sean, Daniella is with your daughter and Marcy!” Sean replied, “I already called Marcy and told her to drive around a bit, to stay away right now.” I could not believe how wonderful my neighbors are. I truly believe The Lord intentionally placed us in this house in this neighborhood.

The result of that ambulance fiasco was the same as the first. I brought him home. Tommy picked us up as I had rode in the ambulance with Thomas. We drove home in silence. There was nothing to say.

Again, Thomas was hospitalized, 2 hours away. No other medication had the wonderful effect of stabilization as the one we had to discontinue. In the meantime I was writing letters and gathering documents and recommendations that Thomas attend residential school. I almost forgot, there were a couple of meetings thrown in there too.

We were prepared to hire a lawyer like the last time, but held off in the hope it wouldn’t be necessary. In the midst of this all I was fighting depression and struggling to find a therapist. I know in one of my former posts I mentioned Nancy and how she was in our lives. https://nayaudo.wordpress.com/2013/07/07/recent-thrift-finds-and-other-parts-of-my-life/

Again God placed someone exactely where I needed them. He knew I would need Nancy 9 years ago when I met her looking for help for Thomas. He knew years later I would need her for help for me.

After the meetings were attended and appropriate letters and letters of recommendation were mailed certified mail, Thomas was approved for residential school. It wasn’t necessary for us to hire a lawyer, thank God! What happens next is a central office sends out Thomas’ packet which is all his history and school information, IQ testing, IEP, etc…

I was told Thomas’ packet was sent to 12 schools.
 

Hospitals and People Placed In Our Lives

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.

The Year Was 2004

So while Tommy and I were more than happy to say goodbye to the year of 2003, we had no idea what 2004 had in store for us. No clue that Thomas would be hospitalized at least 4 more times between February and May/June, 2004. Forgive me if my dates are off. I do have every discharge paper with Thomas’ name on it I’m just too lazy to look for them so I can be exact.

He was hospitalized mostly due to aggression. I was the main focus of the hitting and/or throwing things, occasionally one of the girls would be a target, in that case he was admitted immediately with little to no discussion other than a call to Dr. F. Thomas’ behavior at school was fine with no aggression. By this time I was used to this, if Thomas was having a difficult time at home or he was starting a new medication I would let the school know just to keep them in the loop. I never received any complaints from his teachers or therapists about Thomas behavior at school. Wait…I did receive a letter and phone call from his teacher that Thomas said a voice in his head was telling him to cut his fingers when they were using scissors. Of course I reported this to Dr. F immediately.

It was around this time that I finally decided enough was enough and it was time to leave our pediatrician. I was way past “the time” I should have left. She made it very clear she didn’t approve of Dr.F, would be snarky with me if I wanted to delay Daniella’s vaccinations (just delay not withhold). Her whole attitude was one that made me very uncomfortable and defensive. She somehow believed there wasn’t anything wrong with Thomas to the degree his father and I did. How could this go on? It couldn’t. My mom worked with this one pediatrician in the hospital (my mom was a nurse instructor with the staff education department) and she really liked her personally and professionally. I was skeptical of course. I made an appointment for Thomas when he was well so Dr. V could meet him and meet me when it wasn’t an urgent situation. I wanted to go over his medical, developmental and psychiatric history in a calm manner. I liked her a lot! Dr.V is from India, she’s very kind and very compassionate. She’s also conservative when it comes to referring us out to specialists, I really appreciate that. In the 10 yrs we’ve been with her I’ve complained about the lack of parking by her office but not about Dr. V as a physician or how she’s treated me which has been with nothing but compassion and respect.

So yes, Thomas was hospitalized no less than 4 times during the year of 2004 at the facility in Westchester NY, two hours from our house. This facility is very different from the traditional hospital Thomas was first admitted to. This place is set on acres and acres of land with many different buildings, there is a cafeteria building, administrative buildings, a medical building. Where the patients (or clients) are housed are cottages. Thomas was in the cottage for the youngest clients. Tommy and I liked the staff, they were very good with the kids and you could see that the children liked the staff. They did his laundry and allowed us to bring favorite foods. The day was very organized and similar to the traditional hospital setting there was school every day. Yes kids go to school in a psychiatric facility. I liked that, I mean you worry about so much when your child is hospitalized why do you also need to worry about them missing school?

I liked and respected the psychiatrist they assigned to Thomas. She was young and also a mother so she didn’t talk down to me. Unfortunately Thomas was very well behaved in the cottage even when his meds were lowered. It was clear the structured environment was wonderful for him. The psychiatrist was gracious enough to talk to Dr. F about meds and when Thomas was discharged it was usually with meds that Dr. F was conferred with.

The revolving door of admission and discharge was taking its toll on all of us. Our life was full of stress; running up to Westchester for visits, arrainging for my mom or dad for childcare, trying to have a semblance of a normal life for Alyssa and Daniella, Thomas still had weekly therapy with his therapist, Darlene who remained wonderful and supportive. We had an agency involved who was attempting to provide people to help Thomas in the home. Problem was, the agency people didn’t understand the severity of our situation. The service coordinator even suggested to me that perhaps Thomas needed residential school? I almost blew a gasket when she said that. Not because it was true and I didnt want to hear it, but because it was not her place to say that. Her job was to determine if services they provided were appropriate and available for my son. She had no business providing unasked for opinions. In those years I had a low tolerance for people like that and I let them (or their supervisors) know of my displeasure.

In the middle of all this I was given a crash course on how to get your child admitted to residential school. Oh my goodness, talk about your head spinning! Certified letters to the district, letters from the hospital, Dr. F, Darlene the therapist, etc… Who to send all this documentation to? Time lines the District are legally bound to follow, what if The Board of education refuses and says they will not pay for very expensive residential school? Tommy and I were instructed to retain an education lawyer, thank God we were in a position to do so. The lawyer came highly recommended by Nancy my present therapist.

I look back and I’m still amazed to see the Hand of God at work. I was led to people who helped me and expected nothing in return. There’s no way I could have walked that path without God paving my way even when I didn’t recognize his glorious work.