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This past year I had a difficult time no doubt.  Battling depression while accepting my son being at residential school and raising my girls.  In a way I thought the girls might be “easy” to deal with now that I wasn’t on guard all the time from Thomas. Ha!  A grade schooler, a pre-teen and a full fledged teen.  All girls.  It’s been interesting, sometimes amusing and sometimes I’m ready to pull my hair out. There have also been plenty of times my heart has swelled with pride and they make me laugh or cry with their greatness.  By the way, I’ve already apologized to my mother for my behavior as a teen.  Yes I did.

With Thomas away I had a chance to re-group as his mother. The school staff was now pretty much “in charge” of the majority of his needs and as much as I dislike to admit it, I welcomed the break. The staff is wonderful and kept me informed of when Thomas needed to see the doctor, medications given if he had a cold, etc… I can’t complain at all and I know we are fortunate. God placed him there as I’ve written before, I’m confident of that fact.

This break also gave me a chance to heal and take care of the bruises that you couldn’t see. As already mentioned I take medication and I’m in therapy. Both choices were difficult but absolutely necessary. Even though life wasn’t perfect and adjustments needed to be made I was able to parent my girls, be a wife to my husband, take a class at the local city college and start my own business (www.nayaudo.com ;)). Most importantly my relationship with my son was healed. I can’t imagine being on my guard with him all the time like I was. These days when we visit him at school or Thomas comes home for a visit I’m happy and realize how much I’ve missed him. My son. He’s mine.image

These days

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These days I’m feeling better and dare I say happy at times? I told Nancy this and she was thrilled for me which I thought was really sweet.

The picture I posted is me at a recent festival/fair I attended to promote my business. I am a personal shopper specializing…wait for it…specializing in the thrift! Yes I am :). I have a website http://www.nayaudo.com where I have some of my current inventory. I mainly take requests of a designer or style of clothing one is searching for. If I find it at the thrift my cost is low so your (the customer) price is low as well. I’m more than happy to look for just about anything for anyone. Clothes and shoes though let’s not get carried away.

So getting back to me being happy. I don’t feel odd or euphoric I just feel like “me” and it’s been so long since I’ve felt this way. I’m not 100% and still on the quiet side and I can get lost in my thoughts and insecurities. But I’ve learned to open up a bit especially to Tommy. I take medication too, something I neverever in a million years thought I would do. Part of me felt like a hypocrite as I was terrified of meds, meanwhile my son takes meds. I’m over that now and honestly if I need meds for years or however long my doctor feels necessary I’m ok with that. Depression is effin serious man.

I had thoughts and said things when I was depressed that I couldn’t imagine thinking or saying when I’m just “me”.
Depression is real, it’s more than feeling blue and you can do something or treat yourself to snap out of it. It’s dark and scary and can be dangerous and not a place I want to revisit.

As scary as depression is asking for help can be almost equally as scary. It was for me anyway. As I waited for the elevator to see my psychiatrist the first time I wanted to throw up. I was so, so nervous. But once I was in his office and completely honest about what I was thinking and how I felt, I wasn’t afraid anymore, actually it was good to get it out to someone I knew wouldn’t judge me and wasn’t afraid of what I was saying. I have a wonderful doctor and I’m sure I’m fortunate to have found him without much searching. He is in Manhattan so I have a small commute but it is so worth it, plus there’s a Goodwill across the street. ;).

Keeping the faith

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I have to say when I was at my lowest during my depression is when I would feel so far from God.  I wasn’t angry with him but it was difficult to pray and worship, but…once I started it was wonderful and I would remember how much I wanted to praise Him and thank The Lord for literally holding me up because I know I wasn’t standing on my feet due to my own strength.   I listen to contemporary Christian music when I’m home and especially in the car.  Those songs were gentle reminders of the grace our Lord has gifted to us as well as reminding me I wasn’t as useless and a loser as I thought I was.  That God The Father does love me.  

There was one particular time I was on my way to visit Thomas at the hospital. I was by myself for the 2 hour ride and found a Christian radio station that broadcasted sermons about a half hour long each. I believe this was either just before or just as I was starting to see Nancy and Dr. L. The Pastor on the radio was talking about suicide. That some religions believe you will go to hell if you commit suicide. This Pastor didn’t believe that instead he talked about how your body is a gift from God and how could you destroy that gift? He kept enforcing our body was this “gift” and you don’t destroy something from God. I can honestly say this Pastor saved my life. I was such a mess at that time and kept it all to myself, I didn’t have the words and everything seemed overwhelming. I believed friends and family were afraid of me that they didn’t know what to say to me. My dearest friend Jackie called me when it seemed I was feeling so alone. Every. Time. That was The Lord directing her. No doubt about it.

Every day my husband would text me, morning and afternoon to make sure I was “ok”. When I was with my husband was the only time I felt “safe”. He still texts me every morning.

One of the women I used to attend Bible study with called me just about every week to say hello and ask how I was. Many times I could barely answer her to say “I’m fine” or I would start crying. I’ve told her she helped save my life with those short, weekly phone calls. She was absolutely being guided by the Holy Spirit and I’ll never be able to thank her enough.

Cheryl the pastor’s wife told me she had me in her prayers when I never even knew it.

The Lord was with me, holding me up when I needed him to. He sent radio Pastors and friends long distance and close by to let me know I was not alone. He gave me a thoughtful husband. All the little things add up and can only equal the work of Him.

What to do with myself?

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When September, 2012 came around I decided we/I needed a break from running around.  I didn’t encourage any extracurricular activities and thankfully it went unnoticed by the girls, until around November.  The thought of running here and there like I did last year was too much to even think about never mind actually do. The year before the girls had taken gymnastics and even Thomas has a class which was run by “On Your Mark” an agency that serves the developmentally disabled. I thought it was the coolest that he was in that class and so did the girls but after a few hospitalizations Thomas refused to go and no amount of pleading or cajoling would change his mind.

If Tommy was home I would take the girls and stay to watch them in the waiting room of the gym. Most times there was all this small talk and chit chat from the other parents waiting. I couldn’t talk much or participate my depression was that bad. I would look down or away at anyone who looked my way. To be honest I found most of them annoying. I mean how does one make small talk when the only thing rattling around in your brain is how useless you are? It’s a terrible state to be in. There were many times I sat there holding back tears due to the horrible things I thought about myself.

In the meantime when Alyssa and Daniella were asking me why wouldn’t I talk to anyone. I told them flat out I didn’t like the other parents and I was happy to be alone. Towards the end of the school year I did get friendly with another mother who happens to live around the corner. She is one of those people who I’d call “low maintenance”. She had no drama and pretty much kept to herself as well. Perfect.

I was seeing Dr. L and trialing different meds. Some would work for awhile and then stop working. He would up the dosage, I’d gain weight and get pissed but then the increase would kick in and I could deal with the weight gain. It was a roller coaster and not a fun one at that.

I couldn’t stay home because I would be alone with my thoughts and that wasn’t safe. I couldn’t go to the mall everyday and shop, my husband would’ve had a cow and rightfully so, getting a job was out of the question as I was barely holding it together as it was. This is where the thrift shopping comes in. I could shop or just go through racks on a mad hunt for designer items. I’m guessing I have a very serious face while thrifting. Alyssa came with me a few times and said, “oh my gosh Mom! You should see your face!” That made me laugh and it makes me smile to this day. Not many people talk to me when I’m at the thrift store.

I also became a snobby thrifter. I refused to buy anything I could “afford”. I only wanted things I would never pay retail for as the retail cost of those items are crazed. An example is denim. I would (and still do) only buy premium denim such as Citizens of Humanity, Seven For All Mankind, Madewell, etc… On my birthday I scored a Chanel top. The prices were so low it was awesome.

So there you have it my answer to getting out of the house when you are suffering from depression: Thrift store :).

The Sail School

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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.

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Hospitals and People Placed In Our Lives

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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.

Adjusting meds and more

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We were optimistic we could do this med adjustment at home.  I was confidant due to the three years of stability and no aggression that this could be done.  I couldn’t have been more wrong.  Thomas tolerated the initial tapering down of the dose. We were confidant this was going to work. Then he hit me. On my back an open hand slap that hurt physically and emotionally.

Not long after that incident, one morning Thomas became very aggressive towards me before an orthodontist appointment.  The plan was to drop Daniella and Samantha each their different schools and then head to the orthodontist. Thomas became very unstable in the car and I didn’t know what to do. Go home or go straight to the local hospital? For whatever reason I chose to go home. He continued being aggressive when we arrived home and entered the house. He would settle down and then get aggressive all over again. This cycle went on and on, I even cried out to Jesus. I was afraid. I called my parents who live 45 minutes away to please come. I called Thomas’ psychiatrist. Finally I called an ambulance.

Before the EMT’s arrived I had police officers at my door and almost the whole neighborhood watching. It was around 10 am. I remember my parents arriving just before the police. By that time Thomas knew I called an ambulance and was crying and upset saying he was sorry. The EMT’S arrived and they took down his meds and a short history. I have to say in the middle of a horrid situation we were blessed with awesome policemen and EMT’S. I know they were sent here by The Lord. They were so kind and professional. No one looked at me like I was lying nor did they treat my son like a criminal.

I agreed to have Thomas transported to the psych department of the local hospital. An EMT sat in the back of the ambulance with Thomas and I. he was very nice and made appropriate small talk. The only thing I remember about that conversation is him remarking I looked “young” when he asked how old my son was and the ages of my other children. We arrived at the psych ER and it was a total waste of time. The staff was very efficient and the psychiatrists were very nice and understood the tapering off of the med and why we were doing it. Unfortunately there was nothing they could do for us as they didn’t have an adolescent unit and not enough staff to keep an eye on him one to one in a ward full of grown men. The thought of leaving him there in that situation made me sick to my stomach. He is still my son. I was then offered transport to some hospital in Queens that I hadn’t heard of. No thank you. I took him home.

Samantha

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I think I mentioned Thomas spent 3 years at Andrus.  At the end of each school year the school professionals and Tommy and I would have a meeting to discuss their recommendation and did we agree with them or not. I’ll admit the first year I was terrified they would send him home. Thomas wasn’t ready. Thankfully they recommended another year. By the end of the second school year I really wasn’t sure if it was time for him to come home. But they, the professionals recommended another year and Tommy and I agreed and the decision felt right.

So in the middle of all this I became pregnant (again). This time the pregnancy stuck, lol!! Her name is Samantha. Aside from the constant worry I had a lovely pregnancy. The miscarriages had taken away my innocence that everything would be alright. Part of me wouldn’t relax until she was in my arms. I adored my doctor, he performed the D&C’s so he knew my history. I used midwives with my other children and even the 2 I lost but by this time they had stopped practicing. It was ok though as I firmly believe I was supposed to use Dr. T.

Dr. T was so caring and treated me like a daughter. He let me chose how often I wanted to come in and he always checked the heartbeat for me even when it was very early, he would do a sonogram instead of the Doppler. I couldn’t believe the level of care I received, more than the technical care but the emotional care I received from Dr. T. No question was unanswered or silly and he never looked at me like, “Really…haven’t you done this before?”

Samantha was born naturally in the hospital at 11:37 pm
on a Tuesday just over 7 years ago.

Tommy picked up Thomas as he was able to be there to meet her when she was brand new :). That meant a lot to me. He adored her and to my surprise compared her newborn-ness to Daniella. Thomas almost 5 years old when Daniella was born. He surprised me that he would remember certain details like the umbilical cord still attached and the ink on the foot for the footprint. Thomas always surprises me and I really admire him that he has that ability.

I don’t remember how long Thomas’ visit was, but it was long enough that I was able to get pictures taken of him, Alyssa and Samantha. Daniella was completely uncooperative so she was not in the photo shoot at the mall. A fact we like to tease her about to this day.

Samantha was born during Thomas’ third year at Andrus. I know that made my life a bit easier in caring for a newborn. By June of the following year with Samantha approaching her first birthday it was decided that Thomas should come home to live. The school professionals and Tommy and I were all in agreement. The therapy and meds together had worked to cease the aggression and fits/tantrums. We finally were able to enjoy him and our whole family without worrying he would “snap” and be rough or hit someone. It was agreed however that Thomas still attend Andrus as a day student while he lived at home. The Board of Ed provided busing to and from Yonkers while this plan was in place. It turns out there was one other student from our area so neither rode the bus alone. And believe it or not the bus driver was the mother of a special needs adult child. God is good I tell you.

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.