Author: MenayO

Advocating

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I must admit some of Thomas’ time at Andrus I don’t remember.  He spent 3 years there and I didn’t journal or keep notes. With the exception of this blog I’ve never journaled or wrote anything down (unless you count keeping track of Thomas’ fits and tantrums back in the day) The major milestones of course I can recall but much of the mundane day to day…no.  I can go on with relatively minor incidents but why?  Most are no different than any incidents at any other typical school with any typical child.  I did say I would cover more in future posts as there is one time in particular that I refused to back down and proved even to myself how serious I was about advocating for my son and how deeply my son had rooted in my soul.

I had requested Thomas have updated IQ testing performed.  Unfortunately the grad student neuropsychologist decided to perform such testing when we were in the middle of taking Thomas off one of his major medications. The psychiatrist and I were concerned that the med was affecting him cognitively. In other words preventing Thomas from learning. The stopping of this med proved to be not good at all as evidenced by him throwing things at me while I was driving and a return of the aggression. I couldn’t understand why the testing would be performed during this time of instability but the grad student did it anyway.

Well it turned out that the testing showed Thomas has a low IQ, around 47 which classifies him in the moderately retarded range. Now I know this is just a number and in no way defines my son. Thomas is Thomas no matter what label, diagnosis, or IQ range he wears. But…how could testing performed during a period of instability be accurate? I was furious at the neuropsychologist for this. At a meeting my husband and I were called to attend; In a very calm and controlled voice I told the neuropsychologist how much I indeed disagreed with her findings and how dare she test my son during a major med change. I paused and the neuropsychologist dared to speak. I raised my voice and exclaimed, “I’m not finished!” A silence fell over everyone attending the meeting. I saw my husband lean back in his chair and his expression said, ” oh no lady…now you’ve done it…get ready.” Her interrupting me set me on a tirade of everything I saw wrong with her testing including the fact that she was a grad student and I had in the past told the staff Thomas was way too complicated for students, please don’t allow students to “learn” off of him. I was assured up and down left and right that the student was supervised and logically I know this is true but I was way too upset and felt so wronged for my son. The neuropsychologist barely looked at me when I was finished. That was fine as there was nothing she could say to me at that time that I would have taken seriously.

Fast forward a couple if years the testing was done again with the meds restored and the results were the same. Same IQ. Some would say I should feel embarrassed for my original reaction but I do not. Bottom line is I advocated and spoke up for my son who was unable to do so for himself. I always hoped he was watching me and would see and understand what I was doing for him so that someday he would be able to advocate for himself.

The funniest part of this whole journey is that I used to be a quiet person. I really did not speak up if I thought something was wrong or if I was wronged. It took me receiving this gift of a child from God to change me into someone completely different. I was transformed. I’ve said it before and I’ll say it 1000 times, I would not be who I am if it weren’t for my son. I’ve stood up to doctors/head of departments at major NY hospitals, I’ve gone head to head with the best of them at the school district. I’ve also learned you need to pick your battles and sometimes the professionals I’m yelling at really do care about my son.

I’m not writing this post to brag on myself. I’m hoping someone needs to read this and know you have to power to speak up and advocate. I’ve definitely made mistakes and today I’ve learned not to yell, that people are much more happy to help you when one is “nice”. I rarely yell these days and when there is a situation that it’s almost warranted I stay calm and almost smile at how I would have reacted years ago.

What has also helped me is prayer. Praying to the Father for direction and guidance. He has never let me down. Ever. I will admit that patience and trusting Him to come through is so, so hard but absolutely worth it.

Andrus Experiences

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In the middle of miscarriages and trying to create a typical household for our girls, we still had visits with Thomas. Us visiting him at Andrus and Thomas coming home every other weekend. Life was busy. There were also meetings with various professionals and therapists.

We were fortunate that the psychiatrist Thomas was assigned to was a woman who was wonderful. Dr. “Ellen” never talked down to me, never was patronizing and never made me feel blamed or responsible for Thomas’ behavior. In writing this I recognize The Father’s hand at work. It is no coincidence Thomas was assigned to Dr. Ellen.

Dr. Ellen was very kind when we first spoke. She appreciated my knowledge of all the medications Thomas had trialled without success. Once we agreed to try Thomas on an ADHD med he hadn’t tried yet. Thomas described to his teacher that pictures were “laughing at him”. I became alarmed and asked to stop the med and Dr. Ellen agreed. I was and still am grateful for her in our lives.

Thomas spent 3 years at Andrus. It was not always smooth sailing. There were more than a few incidents. One that comes to mind quickly was me getting a phone call that Thomas had been punched by another resident/student. The person on the other end of the phone didn’t know me and sounded fearful that I would be hysterical. I calmly asked what my son did to warrant getting punched? Lets face it, no child is perfect. It turns out Thomas kept stepping on the shoe of the boy walking in front of him. The boy told Thomas to stop repeatedly, Thomas did not stop so the boy punched Thomas and gave him one heck of a black eye.

Another incident was when Thomas threw a book at his teacher and hit her in the face. This teacher was wonderful and sweet! Oh my gosh, Tommy and I could not apologize enough. We were mortified! The teacher was incredibly gracious and and kept telling Tommy and I she was okay. After that Thomas received a lecture to end all lectures. We dug in, he was not raised that way, he could have really hurt her, we want him home but he has to work harder at controlling himself. Good gravy I can’t think of what we didn’t say to him. Incredibly after that, John the social worker did see a change for the better in Thomas.

What was somewhat amusing is we noticed even with Thomas’ speech impairment, if he cursed you understood him crystal clear. Go figure. I told this to John and he laughed. I returned the laugh, haha. Sure enough a week or so later Thomas was in a mood and when John greeted him Thomas replied, “asshole!” When John called to tell me I do believe I said I told you!

This is just some of what we encountered when Thomas was a resident at Andrus. There is more that I will address in future posts. I want to make it clear that The Lord was with us during this time. He hand picked the professionals who worked with Thomas and in turn worked with Tommy and I. I praise His Holy name.

After…

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As you can imagine after the miscarriage, we were only too pleased  to bid farewell to the year 2004.  Weekend visits with Thomas went well, I don’t remember him hitting or showing aggressive behavior.

Thanksgiving went well and during that weekend is when we put up our Christmas tree and decorate it.  Except I was still grieving and wasn’t in the most festive of moods.  I was stringing the lights on the tree after testing each strand.  When I plugged them all in together the middle strands wouldn’t light.  I had enough!  I took all the lights off the tree and threw them in the garbage.  I announced tearfully, “If anyone wants me to put up a Christmas tree this year it HAS to be a pre-lit tree!”  My sweet husband agreed and we drove to Sears and bought a pre-lit tree. At the time I didn’t realize I was still grieving and that the D & C had been done just 2 weeks prior.

When I think of my kids’ ages now and looking at Samantha (now 7 yrs old), I’m amazed at how fast time passes and I’m amazed at God’s grace.

When I was grieving I was so very angry at God.  I couldn’t understand why he would even allow a woman to become pregnant if he were only going to end the pregnancy.  

Years later, I now know God showed his grace by ending those pregnancies when he did.  (I had another loss in June 2005). As textbook as this may sound there was most likely something very wrong with those pregnancies.  I don’t need to contemplate the “what if’s”.  I know had we been given another special needs child we would have done the best we could with the Lord’s help.  But we weren’t and things turned out the way He wanted them to.  

Samantha is the youngest of four children.  She can be a challenge some days. God chose her to be with us  the same way he chose Thomas, Alyssa and Daniella to be with Tommy and I.

Today I’m about as okay with the miscarriages as a woman can be. I grieved them both and healed.  I have a beautiful family with exactly who is supposed to be here.  

 

 

 

 

 

 

 

Life Really Does Go On

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At first I wasn’t going to write about our life the month or so after Thomas went to live at Andrus.  I figured I’d skip a few months but if I did that it wouldn’t be right and I would be lying by omission about my life.  And this blog is about my life so what is the point in lying?  Who am I lying to?  Myself I would wager. I would be back to living a lie by omitting important events.

 

Thomas entered Andrus the beginning of September, 2004. At the very end of that September I found out I was pregnant. OhMyGosh! No, it was not planned. Talk about timing. The funny thing is that even through the roughest times with Thomas I still said I’d have another if people asked. They did ask, usually in a wise ass manner, “So…are you guys done?” When I gave my reply they usually became quiet and looked at me sideways. Whatever.

Tommy looked a little shell shocked when I broke the news. When the dust settled we figured at least this would be a happy ending to an incredibly crappy year. Maybe this news and event and growing life could salvage some part of 2004? I think by the time I was 8 weeks along we told the girls, they were so excited. We also began telling friends and family as well. This was my fourth pregnancy so why wouldn’t we tell? My due date was June 19,2005 which was Father’s Day. I thought that was really sweet since my last 3 were all born on their due date (really!).

In my experience, when you find out you’re pregnant and it’s a very wanted pregnancy you’re already in love with that baby. You’re already holding him/her in your arms. Names flood your mind and you can’t help it nor do you want to stop it. You look at maternity clothes wondering when they will “fit” because your own clothes are getting tight and not fitting the way they’re supposed to. It is a fun, nervous, exciting time.

I was about 12 weeks along when I began bleeding. Red blood. Not a lot but enough to know this wasn’t supposed to be happening. With all 3 previous pregnancies I bled a little but it was earlier and turned out to be brown implantation bleeding. I called the midwife and she said to get a sonogram the next day. I wasn’t cramping or in any pain so I agreed. I called my best friend who lives here, Jenn and also my mother. Tommy worked late and when he arrived home I told him. My mom was to meet me at the sonogram office the next day. Tommy had to work. I had to bring Daniella who was 3 yrs old at the time.

Daniella and I arrived at the sonogram office, probably by 9:30-10am. My mom worked down the street so she met me there. Daniella was well behaved but for whatever reason wanted me to pick her up. I did pick her up and my mom scolded me saying I was already bleeding and having trouble, I shouldn’t be picking her up. How do you say no to your 3 yr old? I know my mom meant well.

Finally I was taken in for the sonogram. My mom stayed in the waiting area with Daniella. I saw right away there was no heartbeat and the baby was very small. I’d seen enough sonograms from my other children to know this poor little still creature inside me was not alive. My baby that I already fell in love with was not alive. I was stunned. How could this have happened? What did I do wrong? Was God mad at me? The sono tech was quiet and said I had to wait for the doctor to come in. Fine. Whatever. I already knew. I think it was a resident who came in and gently gave me the news.

I went to the waiting room to tell my mom. We stood there and didn’t know what to say or do. I remember calling Tommy on his cell phone, devastated. I think I called the midwife. I remember thinking there was no point in staying at the sono place so I told my mom I was going home. She was worried about me driving but how else was I to get home? I put Daniella in her car seat and came home. I really don’t remember much after that. Tommy came home from work early and took care of the kids while I stayed in our bedroom and watched television and cried. Television program after program I watched. Every now and then I would have a moment of forgetfulness but then everything came flooding back and then the tears flowed and flowed. I had never cried so much in my life ever.

My sweet friend Wendy from California called to give her condolences. Friends called to say how sorry they were. I was grateful for the outpouring of caring and sympathy.

After waiting for my body to complete the miscarriage on its own and learning it could take another week or more I opted for a D&C. That choice worked for me and I’m so grateful I had the option and the doctor who was referred was very compassionate. The date was November 19, 2004. The nurse who took care of me before the procedure was a woman I worked with years earlier. The nurse who cared for me afterwards was also one I used to work with. They are both stellar caregivers and treated me like glass.

There are no coincidences.

A New Normal

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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

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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.

“The” school!

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After almost an entire summer filled with visiting residential schools and not finding “the one”, you know the one where I can sleep at night knowing my son wasn’t living at home, the one we felt was safe enough for our son. Safe. That our son who had speech issues would be able to tell us if anything happened to him. Safe. That Thomas wouldn’t be abused in any way shape or form. We needed this safety from strangers for our son. We needed to have our gut feelings on hyper drive while touring these schools. There was no arguing or trying to convince the other of a school, it had to be a mutual decision that this was the place.

We both couldn’t believe we were doing this. I remember feeling this was while touring special needs pre school 5 years earlier. That this wasn’t the way things were supposed to be. At the time I was so upset, I was supposed to be looking at pre schools with a bunch of typical children running around, not glancing uneasily at children who had very apparent disabilities, unlike my son who looked typical. Anyway this is how things were at that time, we were doing something we never thought we would do as a parent, making a decision in my opinion no parent should have to make.

In August we received a call from a school that came highly recommended by Nancy and Dr. F. The “Andrus” school. I had called them when we started the whole process. I kind of nagged them to see if they had any openings, who was the admissions director, what population did they serve, who was the admissions director again? Can she call me back? I was quite “persistent” to say the least.

I remember when we drove up there, it was an hour away which was the furthest we would go. The drive way was lovely, well kept and lined with trees and flowers. Thisndrive way led to the main “house” which was where the admissions office and other administrative offices were. We met with the admissions director and she reviewed Thomas’ packet. There was some question of whether his IQ was too low for their program. I remember my stomach was in knots.

We toured the cottage for boys Thomas’ age. It was so nice. An older stone building well kept and very clean. It had bedrooms, some single some double, a living room, huge dining room and a very large kitchen. The residents/boys were at school but we met the staff who were so open and very nice. The director then took us down the road (still on Andrus property) to the school. There were day students and residential students at the school. The residential students would walk down to the school from the cottage every morning. Andrus is on acres of land with an orchard of apple trees before you arrive to the school building. The school was like any other school with administrative offices, cafeteria, gym, classrooms, etc…

I remember going back to the admission directors office (I think) and excused myself to use the ladies room. I was holding back tears and praying fervently to God to please let them accept Thomas, please!!! That he shouldn’t be penalized and have to attend a “lesser” school because of his IQ. My goodness did I pray in that ladies room.

We then met with other professionals, social worker, speech therapist, I can’t remember who else but the room was full and Thomas was sweet and charming hanging onto Tommy . After the meeting we went home and waited.

Thomas was accepted to Andrus and I can’t think of any other reason except God wanted him there. I know my faith and I know God is faithful. He did hear me in that ladies room and I believe we had to see those other schools so we would know what else is out there in order to appreciate what God had already chosen.

Residential School

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So we pressed on with pursuing residential school for Thomas.  The letters and recommendations were written and mailed off certified mail, the educational attorney was on retainer, and meetings were held; Nancy even drove in from Manhattan to attend.  Much to both Tommy’s and my surprise the process went relatively smooth and within a couple of weeks we found out Thomas was approved for residential school.  I credit retaining the attorney.  I had heard from various people “in the know” that the Board of Ed was known for dragging out these cases for months even a year.  As a family concerned with safety we couldn’t have that and I was so glad we followed the advice we were given, no questions asked.

The next step was the Board of Ed sending out Thomas’ packet. The “packet” is Thomas’ IQ information, his IEP (individualized education plan), history, diagnosis, therapies received (speech, physical and occupational), etc… Tommy and I had the right to refuse a school. I don’t remember how many schools they sent his packet to. But a week or so later we received our first phone call to visit a school.

The place was way out on Long Island, I remember it took us 2 hours to get there. First impression of the facility was that it looked nice, but there were no kids/residents around. The director said everyone was either in school or on a trip. We both thought that was strange as part of our decision would be based on the population and they knew we were coming. Anyway the director was nice enough. All I remember about that place was seeing the actual residence where the kids sleep. It looked like a dorm setting but it smelled like stale laundry. I figured that was par for the course being that the residence was full of young boys. Maybe they didn’t clean up yet? But, again; they knew we were coming. After we left Tommy told me he was disgusted with the place and felt it was dirty. And we both were still wondering why we were invited when no children were present. Anyway, we declined that facility because of course they accepted our son .

The second school we visited was an hour or so away, not too bad of a distance in our opinions. The cottage where the residents sleep was very small and I personally thought it was crowded. I mean everyone had their own bed of course and there was a kitchen and living room area, it just wasn’t where I wanted my son to live/sleep. It was clean however. I also wasn’t thrilled with the interview process. The director and the chief psychiatrist sat with Tommy and I and went over Thomas’ packet and history. I felt patronized and the psychiatrist also made a comment or two that put me on the defensive. Nope, not a good fit. I don’t recall if they accepted Thomas or not but it didn’t matter anyway as he wasn’t going to attend there.

The third school came highly recommended but is 2 hours away in upstate NY. We went to see it anyway because things were not going well at home at all. Thomas was very unstable. This school was really nice, it was a bit on the rustic side, very “woodsy” and they had a farm and stable and animals( sheep, horses, I think a cow). This facility at the time won awards for its work with pairing special needs kids and animals. The staff was very mellow and one could see they all wanted to be there, they knew every child’s name we passed. The cottage was small but very clean and orderly. I remember the man in charge during that shift was an ex- marine. Perfect!

We had a lengthy tour with the director and another person who’s title I cannot remember and talked about Thomas, his packet and if he would fit in with their population. We all agreed he would, but…we lived 2 hours away. What if there were an emergency, they would take care of things but we would have to drive 2 hours in a worried state. There were also meetings that either Tommy or I were required to attend. I wouldn’t be comfortable doing all these meetings via teleconference. I would want to be there and see these actual people who are in close contact with my son and in my opinion they need to see me as well and know that my son is a person with a family who loves him. After much thought and debate and discussion Tommy and I decided to decline this school as well

At this time I started getting nervous. The person in charge of Thomas’ “case” from the Bd of Education would call and try to encourage me to take a placement that was already offered. I would get so mad at this woman. What did she care it wasn’t her child! All that mattered was the case be settled and closed. Nope, that wasn’t happening yet. I remember yelling at this person that my son wasn’t a dog you just put “somewhere”. Tommy would tell me to calm down but I wasn’t at that place yet, I was so used to fighting and yelling for Thomas that I wasn’t about to stop then.

Moments

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I was thinking about this blog this morning while running some errands.  Today is my youngest daughter Samantha’s 7th birthday.  I was thinking of all those times in our lives that we wish we could stop time and just enjoy those  “moments”.   You know the ones I’m talking about.

One that comes to mind for me are when my fiancé (now my husband, Tommy) and I were camping with friends for the weekend.  Tommy and I took a walk and ended up in this large empty field.  The stars were all out and the night was gorgeous.  We lay down on the grass on our backs and just stared up at the sky holding hands. I remember wishing I could stop time.

Another moment was when Thomas was a newborn, actually 2 distinct moments. The first time I was in my room with just Thomas, Tommy and I. I held Thomas all swaddled in the hospital blanket with his head held in my hand. I remember his lips were pursed and I kissed those little lips. The other moment was probably about 2 weeks later. Thomas wouldn’t sleep in the cradle so I had him in the car seat on the floor with me on the couch next to him. He woke up to nurse and after I fed him I put him on my shoulder to burp. Thomas lifted his head and turned his face towards me. I stared at that little face and could feel his breath on my neck and I fervently wished I could stop time right then and there.

When I was thinking about Samantha’s birthday today I was thinking about my labor with her. Believe it or not I wanted to stall time then. I had a fast labor with her once things really got going and I didn’t want to miss anything, I knew she was my last. I didn’t have an epidural or pain meds so I wasn’t worried about being out of it, I just wanted time to slow down.

On of my favorite pictures of Alyssa and I were taken in one of those photo booths where you get like 4 black and white shots. When I look at that strip of photos and I feel like right then I did slow down time for those moments with her I’m not sure why. Maybe it’s the strip of photos one picture right after another.

When I was pregnant with Samantha, Daniella was 4 years old. She was a fun 4. I have many memories of her making me laugh since she was the type of child who spoke her mind for better or for worse ;). I drank a lot of water with lemon when pregnant and Daniella asked me very loud in Macy’s one day “Is the baby in your belly floating in all the lemon water you drink?” I burst out laughing!

I love the “moments”. Some bring you to tears and others have you giggling like a little kid.

The Year Was 2004

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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.