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.

That one New Year’s Eve

I didn’t mention in my last post that it was December 31st (New Year’s Eve) when Tommy and I decided Thomas should go back in the psychiatric hospital.  

My friend Diane met us in the emergency room. She was a wonderful friend to have there to Thomas and I. Thomas was nervous and very well behaved much to my frustration. I was terrified that they wouldn’t admit him if his behavior wasn’t witnessed by the ER staff. I told the ER doctor what had been going on at home and about the recent hospitalization. The doc seemed to be unsure about readmitting Thomas but up I was adamant about it. I couldn’t imagine taking Thomas back home after all we had been through since the discharge. After about 4 hours in the emergency room and the resident conferring with other people, Thomas was admitted. We said good bye to Diane and I went with Thomas up to the unit to say good bye to him. He knew what was going on and of course was upset but it had to be. I told Thomas his Dad and I would be up the next day to visit and said good night. The time was about 10:30 pm and I wanted to get home before midnight. I had an hours drive ahead of me.

I remember driving on the Kosciuszko Bridge towards home and looking over at all the lights of Brooklyn. The who world seemed so wrapped up in the fact that it was New Year’s Eve mean while I had just admitted my son to the psych ward. Weird. The lights were so beautiful.

I arrived home about 11:45 pm. Tommy was waiting for me with our close friend Brant. I remember Tommy hugging me and Brant pouring a glass of wine for me. Tommy did ask how Thomas was but other than that we didn’t talk much about Thomas, what more was there to say? I had a couple of glasses of wine and Tommy, Bramt and I just hanging out and talking and joking about nothing in particular. I know that was just what was needed at that time, no heavy conversation or tears necessary.

I wish I could say the doctors made things “right” during this admission but I can’t. I remember this admission I felt very defensive as the resident that was assigned to Thomas kept saying that Thomas’ triggers were due to his environment. I wondered if the staff thought I had an unorganized household. No one ever reassured me that wasn’t the case. The resident also suggested residential school. This was totally uncharted territory and to top it off the social worker wasn’t much help as we were not in a local hospital where she would know local resources to help us.

Thomas was discharged and Dr.F had returned from vacation so we were able to resume Thomas on his previous meds and trial other meds to curb the aggression. By February Thomas needed to be admitted again. This time Dr. F recommended a facility in Westchester NY, two hours away. We agreed since there wasn’t any local hospital that was recommended. We also wanted the best for our son.

Off Meds!!

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

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

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

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

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

New medications

After our visits with Dr. F, Tommy and I agreed to have Thomas take the medication he recommended.  After about 3 weeks we noticed a change in Thomas’ moods.  They weren’t all over the place and he was a tad calmer.  No magic miracles mind you but a change that was enough to be noticed.  The aggression was less as well.  Thomas continued to see Darlene every week without fail.  

After a while though (I would say a few months) the aggressive behavior returned.  Dr. F was kind enough to do some of our appointments over the phone to avoid us traveling to Manhattan.  Plus Thomas really didn’t talk to him so Dr. F relied on my observations and the notes I continued to take.  Meanwhile I discover our pediatrician was totally against us seeing Dr. F.  She felt it was wrong that we had phone visits and even wrote that in Thomas’ chart!  (I found this out years later).  The ped now decides she has a doctor/psychiatrist to refer me too~ AFTER we have established a relationship with Dr. F.  I refused her referral stating that we already have a doctor, thank you and besides I asked her for a referral months ago and she had no one.  Have a nice day :).  

I wish I could say I’m over that pediatrician and how she treated me but sadly I am not.  She seriously scarred me.  When you respect someone and they turn on you and insinuate that you are the problem it’s jarring and quite unsettling to say the least.  Even after we left that practice and Thomas had an appointment with a new doctor, I would be a rediculous wreck that the new specialist wouldn’t believe me or that I would be blamed for his behavior.  I carry that around still to this day.

Anyway…the aggression was returning and Dr. F increased the risperdal to see if that would help.  It did not.  To make a very long story short this began the time where Thomas trialed many meds to control not only the aggression but also his moods.  Thomas could have periods of time where he would be wonderfully behaved then the instability kicked back in and you never knew what was going to happen next.  

The meds seemed to work for a short time, then stop being effective. One medication gave him scary side effects and we ended up in the ER once as a result.  Of course by the time he was seen the side effect had resolved but jeez man!  The scrutiny I was under in that ER as his parent was unreal and scary.  

Thomas even trialed different mood stabilizer medications but nothing worked as well as the original, first med suggested by Dr. F.  He is on that med to this day. During the different medication trials there came a point that Thomas was aggressive to his sister so we had to make the decision to hospitalize him in a pediatric psychiatric unit.  The first time was at a hospital on Long Island, about and hour and half away.  It was a planned admission.  Dr. F did not have priveleges in any hospital and I had read online from other parents that they were pleased with this hospital.  The nurses and staff were very kind but we were a mess to leave him there.  My goodness he was only 8 years old!   Visiting hours were strict and not the most convenient. However Tommy and I were so optimistic that this was the right thing to do, that the doctors there would run all kinds of tests on him and we could get a better picture of what was wrong, why he behaved the way he did. Thomas was also developementally delayed and did not present himself as a typical 8 year old regardless of the bipolar/aggression and mood instability.    

The hospital environment is one of no stress, no siblings to piss off or get pissed off by, there is a routine and that routine is the same. There is staff everywhere. Thomas thrived in this environment. Since Thomas showed none of the behavior from home we described, the doctors at the hospital decided to take him off all the medications used to control the aggresive behavior. Tommy and I agreed as we figured they would put him back on it once the aggression showed itself in the hospital. The problem was he still wasn’t aggressive even off the medication while hospitalized. He did almost lose it on me at one visit but pulled himself together once he realized the staff was watching. This was par for the course with Thomas at this age.

As far as evaluations and tests that Tommy and I were so eager to have performed…no, not much was done. Well nothing that wasn’t done already such as IQ tests and such. Oh, he had an MRI performed. Ok. All that did was show things that were shown before he had his helmet fitted so many years earlier. Nothing to cause this behavior according to all the specialists who deciphered the MRI report. So after 3 weeks or so Thomas was discharged. On no medication to control his aggression and a very low dose of mood stabilizing medication. Oh sh*t is an understatement I assure you. Dr. F was on vacation. This isn’t happening!! I wanted to yell, but it was.

God in all this

I haven’t talked about where God has been in all this.  He was and still is by my side.  Even though back then when Thomas was out of control and we weren’t even attending any church I know God was guiding my steps and watching and comforting the whole way.  There are too many instances where I know my strength did not come from “me” alone, it couldn’t have.

While Thomas was still seeing Darlene the therapist on a regular basis and the psychiatrist here was recommending yet another med to “trial”, Tommy and I bought our first computer. This was 2002 I would guess.  The internet!!  Wow!  :).  Incredible.  I did  look up ADHD and while Thomas did have some of the signs it did not fit him.  I wasn’t trying to diagnose him but seriously trying to find something tangible because no one else was.  

I stumbled upon a child and adolescent bipolar website (it no longer exists under the former name) and they had a “Find a Professional” tab to look up bipolar specialists in your area.  A couple of years earlier when we took Thomas to the psychiatrist in NJ, that doctor had given me a list of psychiatric meds for me to look up to consider for Thomas.  The majority of the meds were those used for bipolar disorder.  I knew this due to a close family member who is diagnosed bipolar and they would tell me about the meds and different changes.  

I had no idea that children could be diagnosed with bipolar, I had no idea that it could run in families.  So I chose a dr in Manhattan, a bipolar specialist.  I figured if anyone could tell me if Thomas is or isn’t bipolar it would be a specialist right?  Dr. F set up 3 appointments.  One for me alone to talk to him, one for Thomas and the last one for Tommy and I.

I had been journaling/taking notes of Thomas’ behavior for about a year or so.  I needed some sort of documentation as no one seemed to believe me because in school he was great, with Darlene he was fine~no aggression towards me.  In school he was wonderfully behaved.  Talk about frustrating!  Not that I wanted him to beat up a teacher or anything, my gosh NO.  I just wanted someone besides my family to see what he does and tell me what was wrong.  The pediatrician continued to be useless and for whatever reason pretty much refused to see that anything was wrong besides the speech impairment.  She kept saying that the aggression was because Thomas was frustrated due to the speech issue.  That held no water with me as I was his mother and if anyone knew what Thomas was saying it was me.  It may not have made sense to “you” but it did to me.  Any mother can attest to that especially when it comes to deciphering the speech of your child.  

Why didn’t I leave that ped?  Thomas did have medical issues and she was very competant in handling those so I wasn’t prepared(or annoyed enough…yet) to make the leap and ensure the medical issues be taken care of appropriately.

So onward to Dr.F! Did I mention he doesn’t take insurance and we had to pay out of pocket to see him? I never drove by myself in NYC before that appointment with Dr. F. Nope, never. Tommy was working, my Mom was watching Alyssa and Daniella and I really didn’t feel like asking anyone to tag along so I drove the West Side Highway to find Dr. F’s address on the upper west side alone, I was 31 years old. I was so proud of myself! I parked in the closest parking garage and since I was early walked along Columbus Ave. and took in the sights of all the great shops over there. Then…next thing I knew it was time to meet Dr. F. He had an Italian accent which I found very comforting for whatever reason. He’s tall and thin and probably in his late 40’s. Very down to earth and spoke without sugar coating anything. I adored him. I gave him copies of every evaluation and some originals of my journal observations of Thomas, history with the other psychiatrist and therapist, Darlene, meds trialed, the terrible reaction the the ADHD med, and everything else I could think of about my son. Dr. F asked a ton of questions himself and offered to make copies of original documents. I felt very comfortable and confidant with him. He was after all the bipolar “expert”.

The next visit I brought Thomas who of course was rediculously quiet, he barely spoke when I was in the room. OMG. Nooooooo! Dr. F asked me to leave the room and I was more than fine with that. He did manage to get Thomas somewhat talking and have him answer questions so Whew and Thank God!

The final visit was with Tommy and I. Dr. F did indeed feel Thomas is bipolar and to be honest I wasn’t all that surprised to hear it. I’m sure I felt a tad relieved as well that there was finally a name to his behavior. After all this time. He mentioned medications he would chose in treatment and told us to talk everything over and call him with our decision. I love this next part, Dr. F said to Tommy and I, “Don’t think if you chose to NOT use medication or ‘do’ anything that you haven’t made a choice. You have made a choice, you’ve chosen to do nothing”.

We did call Dr. F back and agreed to start the medication he recommended. I was nervous because it required blood draws, but Thomas was wonderful ~ he really was an incredible trooper especially since he didn’t swallow pills yet and the liquid version of medication tasted truely awful. He took the liquid and put up with the blood draws. Thomas is gifted by God in this way. I believe that with everything.

God guided our steps to Dr. F, He guided me to drive to Manhattan alone. He is a wonderful guide when we just stop and let Him, when we stop fighting. I need to read my own words and use that advice more often.

Back then I wasn’t going to church. About 2 years ago I read Deuterotomy 4:30-31 “When you are in tribulation, and all these things come upon you in the latter days, you will return to the Lord your God and obey his voice. For the Lord your God is a merciful God. He will not leave you or destroy you or forget the covenant with your fathers’ that he swore to them.” I did return to the Lord and he is merciful. When I read that passage for the first time I think I almost fell off my chair for it reminded me of that time in my life. The truth of it was glaring and wonderful all at the same time.

Keep on keepin’ on

First before I delve into more of the fascinating story that is my life I need to announce that I scored a Vera Wang cardigan today at the thrift!!!  Yes, Vera Wang, and not “Simply Vera” from Kohl’s~the real deal.   I think I paid around 3.50 and it’s blue and it’s gorgeous 🙂

Ok, now…when Thomas was around 5 and a half, shortly after we moved here and I gave birth to Daniella, I managed to get him into counseling with Staten Island Mental Health Society.  There was a waiting list at first and I called and called telling them how Thomas’ behavior was not normal and he was hitting, having long lasting fits, etc…  They told me to bring him to the ER.  No.  That was not the answer I was looking for.  His pediatrician continued to be useless and would not refer me/him to a private counselor so this clinic setting was all I had to go by.   After what seemed like forever (probably only a few months) we were set up with a therapist.  Her name was Darlene and she was wonderful.  She listened to me and saw Thomas on a one to one basis every week.  I can honestly say I rarely missed a week, like the boy had to be sick to miss out.  I told Darlene about our experience in NJ, and I was NOT doing sticker charts, btdt with the one in NJ.  It didn’t work with Thomas.  In fact to this day I loathe that phrase: “sticker charts”  please…gag…  This is my experience and in no way do I wish to offend anyone, so  if sticker charts worked wonderful for any parent out there I’m very happy for you.

After Thomas was seen by Darlene for a couple of months she agreed to refer us to the psychiatrist to talk medication.  Fine.  The doctor was nice enough but she didn’t have a diagnosis, just treating symptoms.  Whatever.  Thomas’ fits were bad, the hitting of me was bad. One time I had Daniella in the stroller and Alyssa and Thomas walking, we walked to the nearest drug store a block away.  On the way home Thomas threw a fit for whatever reason and I had to push the stroller with a young baby, ensure Alyssa was still following me and carry Thomas under my arm with his arms flailing and thrashing around.  I did this for about a block and a half. I digress…the psychiarist wanted to try an ADHD drug.  Tommy and said fine because we had no idea what we were  dealing with anyway.  I don’t remember off hand the drug but it was a low dose and a short acting one.  Like it was supposed to last about 4 hours.  I gave him the first dose on a Saturday morning.  An hour later my son started crying and cried all day.  All.  Day.  No exaggeration.  Tommy and I were at our wits end.  We knew it was from the medication.  Finally the covering doc called us and we explained the med trial.  He said not to give anymore.  Really???  OMG.  Of course we weren’t going to give anymore.   

So that ended the ADHD trials.  I refused to give him more ADHD medications.  The psychiatrist then suggested a medication to help Thomas be less aggressive.  Tommy and I agreed.  We had the prescription filled, I read the side effects and promptly poured the med down the drain.  I was terrified!   Two weeks later I called the psychiatrist and told her what I did and that I was back to my senses and asked for another prescription.  Thank God the insurance covered it again.  The med was Risperdal if anyone is wondering.  Thomas had a mostly positive response to the risperdal, it did help with the aggression and the hitting became less but not gone.  He still saw Darlene on a weekly basis.

The psychiatrist still did not have a diagnosis and that really irked me.  Some doctors don’t understand the importance of having something you can “touch”.  With a diagnosis, I could look things up, what’s the best treatment?, who’s the best doctor we can find?  A diagnosis would be tangible and real for crying out loud.  

Moving out of N.J. (yayyyy!!)

So, in the middle of Thomas’ fits and thankfully he was in special needs preschool with the most awesome bus driver, teacher and speech therapist ever; Tommy and I decide to have another child.  We are a fun couple I tell you.  I became pregnant with Daniella and shortly thereafter decided I couldn’t live in NJ anymore.  No.  I had to move back to Staten Island.  Had to!   Tommy and I talked it over and we both decided it was for the better to move back.  We really weren’t happy there, after 15 months I still hadn’t made any friends and I figured it would be easier to navigate the NY special ed system because it was a little more familiar than NJ.  The Great Garden State as lovely to look at and visit as it was, was not for us.  

 Thankfully we sold our house within a month or so and we negotiated this house from the best sellers ever.  When we closed on our house in NJ it was almost a nightmare.  Someone (we have no idea who) dropped the ball and left 3 days between closing on the NJ house and closing on the Staten Island house.  So technically for 3 days we were homeless.   OMG yes we were.  Terrible.  Thomas, Alyssa and I went between my sister’s house and my inlaw’s house on Staten Island.  Tommy met up with us here and there.  This was the very end of March and I was due with Daniella the very end of April.  

 We closed on our purchase house on April 3.  I cleaned like a mad woman nesting and all, it was terrible to clean like that and be that big and pregnant.  I couldn’t help it.  My gosh!  Anyway, we loved it here immediately and I gave birth to Daniella on April 29, 2011.  

 When we negotiated the price on his house, one reason we were so successful was because the house needed a lot of work.  New windows, new roof, new furnace, total updating, new kitchen, new bathrooms,etc…  Fun times I tell you with a newborn and a 5 yr old off the hook behavior wise.

 In between cleaning like a lunatic and being pregnant I managed to have Thomas readmitted to the public school system here and after evaluations were performed by the board of ed it was deemed he should be fine in a “CTT” class meaning Collaborative Team Teaching.  This was new back in the day.  One regular ed teacher, one special ed teacher and a para-professional.   Half the class was special ed students and other half typical students.  I was fine with this.  And it seemed like a great idea at the time until I noticed Thomas couldn’t keep up with the work or do the homework without a lot of help and prompting.  If I didn’t help him (heck even if I did) he became frustrated and would throw a fit.  That’s not to say he wasn’t still having tantrums and fits like usual.

After this kindergarten year was up it was determined by the board of ed that Thomas required full time special ed, in a 12 student, one teacher, one para professional environment.  Again I was fine with that and agreed.

More of my life

When Thomas was 2 years old and 1 week his sister, A was born.  Of course we were all enamoured with her, how could we not be??  She was one of the very few girls born into Tommy’s family.  At that time I was floored that I even gave birth to a girl!  A was a sweet baby and she’s still sweet.  Her and Thomas were very close when they were young/toddlers/preschool and that closeness still exists today.

 I wish I could brag and say Thomas adjusted so well to A but I cannot.  He would hit/slap her, in the car throw his sippy cup at her, throw his sippy cut at who ever was sitting in the passenger seat. I’ll never forget my mother taking a great hit to the head with a full sippy cup I’m sure she saw stars.  One time Thomas grabbed the cordless phone and threw it at A who was sitting in her car seat on the floor.  I literally dived in front of her to deflect it and got hit in the eyebrow.  The end of my eyebrow was cut and it bled and bled.  Thomas started screaming because of the blood, but there wasn’t anything I could do.  Tommy was working so the ER was not an option so I just cleaned up the best I could.  I still have a small scar there.  

 I had 2 play pens so if I took a shower or had to leave them alone in the living room I could do so safely otherwise Alyssa came with me every where.  

When Alyssa turned a year we decided to move to NJ. My mom had already moved there and I thought it was the right thing to do, the right place. Thomas was 3. I did not fall in love with the Great Garden State. I tried but it’s so difficult to make friends when you’re an adult. Thomas was in special ed preschool but he took the bus so I didn’t have the opportunity to meet the other mom’s and hopefully find someone with common ground. When we attended a birthday party for one of the boys in his class, the other mom’s all knew each other and stuck together. I guessed they probably all grew up together, much like the friends I had here on Staten Island.

In the middle of our time in NJ, I searched high and low for a therapist to take Thomas to. He had fits that lasted around 20 minutes (yes, I timed them), he was still hitting me and had tantrums that would come out of nowhere it seemed. It was horrible. I never knew what kind of day we were going to have, what kind of fit he would have, where or how hard I would be hit or how long the tantrum would last. Our pediatrician at the time was useless. I would call her in the middle of one of his fits so she could hear what was going on here and she never helped us, she never would say there was anything wrong with him. If anything I felt like she was blaming me.

I did find a therapist, a young woman who was awesome but Thomas was not speaking very much at this time (speech impaired) and he never hit me in front of anyone except family members. So she really couldn’t help us much but she really tried and if anything it gave me a “grown up” to talk to once a week. After a few months with no improvement we asked to see the psychiatrist. The psychiatrist was a very nice woman and Thomas for whatever reason was in rare form that evening, very rambuctuous and even hitting. The doctor sent us home with the name of a medication we could try but of course I looked it up in my nursing drug book, became scared to death of the side effects and we decided no, no medication. “I mean he’s barely 4yrs old!!, How can we give him medication??” The therapist soon after took another position and left the practice and her replacement made me uneasy so we stopped therapy (not that it was doing anything anyway). In a few months I was ready to talk medication again but we couldn’t see the doctor without seeing the therapist and the whole thing seemed like so much trouble I kind of ended that chapter right there.

My life

When I started this blog my full intention was to talk about my business, thrift store finds, what exciting finds I’ve had~the one of a kind treasures…I never thought I would talk about my life as much as I have in such a short amount of time.  I pictured me easing readers into my life but I guess it’s not supposed to be that way as I pretty much jumped in feet first.


Perhaps introductions would be useful?  My husband Tommy and I will be married 18 years on November 12, 2013.  Our son, Thomas just turned 17 years old.  Our daughter, A will turn 15 very shortly, our daughter D is 12 years old and S the youngest girl is turning 7 years in August.


Thomas is special needs and has a list of diagnosis’ and I’ve discussed him in previous posts.  All our girls are “typical” children.  I’m thrilled to brag that A and D are in honors classes in school.  S is very typical of a 7 year old girl and the youngest of 4.  She knows how to “work” the older girls and both grandfathers, lol!


It’s Thomas though that has changed my life in ways I never thought possible.  I love him, I love all my children. I’ve learned along with love there are other emotions that are attached to that love such as protection, guilt, self doubt, insecurity, worry, etc… When there’s special needs involved I’ve personally experienced those other emotions at least 10 fold compared to my typical children.

That’s not to say I’ve never doubted a decision I’ve made concerning my girls or felt self doubt about how I handled a situation. Just not to the gut wrenching, twisted degree when those decisions concerned my son. Also, my husband and I have had to make decisions concerning our son that most parents aren’t faced with thank God. Decisions concerning strong medications, “Do we really trust this doctor? He’s one of the best in Manhattan… Yes? Ok…then we go with that med and that dose. Yes we discussed the blood work that needs to be done and possible side effects…He’s recommending residential school, yes I know he’s only 8! He’s my son too!” That is a very, very small sampling of the conversations between my husband and I. Then there’s the financial aspect. The majority of our son’s doctors did not take insurance. We paid out of pocket for many years to access specialists mostly psychiatrists in Manhattan. I’m sure there are many people who live where I am who would tell me they have a wonderful dr who takes their insurance. Many years ago we did not have that luxury and I went with my gut feeling and headed out to Manhattan.

My husband and I also faced the rediculous reality that no one would diagnose our son with anything tangible until he was close to 6 years old. At 6 months old Thomas was found to have torticollis which caused him to not be able to turn his head to the other side. When he lay down Thomas would only turn his head to the right side. This caused a marked flattening of his head. We were sent to Manhattan to a neuro surgeon who prescribed a moulding helmet to correct the disfigurement. Thomas was fairly cooperative with the helmet until he was about a year old at this time he learned to take the helmet off, so we all agreed to discontinue the helmet. It did correct the majority of the flattened area and Thomas also had physical therapy to correct the torticollis.

At 3 yrs of age we had the labels of mildly mentally retarded (according to his IQ) and speech impaired but no reason why he was mentally retarded or why his speech was impaired. Thomas was “fine” at birth, no signs of anything wrong. When Thomas was a year old he began hitting me and this went on for years literally, nothing I did would stop this behavior. Everyone I asked for advice, physical therapist, pediatrician, other parents, my parents were clueless. The “professionals” asked if my husband hit me. No he did not. What television did Thomas watch? Ummm Sesame street, Teletubbies, etc…Nothing violent ever. It was a very trying time to say the least.

Thrift, handbags and prayer

I’m telling you those 3 things are so important.  And not new handbags either, I’ve found the most awesome vintage leather “Made in USA/NYC” Coach at yard sales *and* the thrift.  

I may get to the thrift tomorrow if it doesn’t rain horrendously. Somedays, I’d rather be there than home when it rains anyway.  It’s oddly comforting to hear the rain pound on the roof of the thrift store.  In my completely biased opinion it’s cozy to be searching the racks deep in thought of which labels I want, what size, “OMG doesn’t so and so want this denim brand??”   Parking is fairly decent so I’m not too concerned with getting drenched on the way to my car after.


Handbags…I’ve been enamoured with handbags for years now.  I call it a sickness, haha!  I probably have too many but I guess that depends on one’s point of view.  Some women buy a bag and use it to death~I did that a few times with a bag I totally loved.  Lately, given my current collection I’m able to shake things up a bit and change bags when I’m bored or want a different look.  I like having that option.  My husband has generously purchased me a couple of “high end” bags but sometimes I feel odd wearing them, sometimes not.  I guess it depends on my mood.  I don’t care to flaunt I just like what I like and I’ll compliment anyone’s bag no matter who’s name is attached to it.  Colors are awesome in my opinion.  To break away from the standard brown and black can be fun.  Red can be a great neutral people :).


Prayer.  What can I say?  Not everyone prays, not everyone prays the same.  Some people are loud pray-ers, some very quiet and personal.  I will never forget this past Halloween when this man I knew from church approached me and asked how my son (Thomas) was doing.  I guardedly answered “fine, thank you, ” not realizing he was in Bible study with “C” one of our pastor’s wife who I am close to.  I quickly put the connection together and told the man that Thomas was in a residential school and Tommy and I were very happy with the school, thank you so much for asking, etc…  The man gently told me that the bible study group prayed for Thomas and my family every week that the best school for Thomas would be found and my family could heal.  I held back tears.  I never knew they were praying for us.  I felt like I was given the most precious gift that can never be touched with human hands.  That people would pray for us like that~can you imagine??  If you can you’re as blessed as we are.