Asides

Optimism

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Sooooooo I’ve seen my therapist and doctor and I’m back to feeling happy :).  I’m glad to have nipped things in the bud and be able to return to my regularly scheduled programming of thrifting.  Today I scored a gorgeous pair of Antik denim and on Tuesday…Tuesday I found a pair of True Religions!!!   Eeeeeek  :). Forgive me for repeating about the True’s I’ve been on a hunt for those for a long time. I’ve already skinnied those jeans that needed skinny -ing.  Have I mentioned that I sew?   I do for those not in the know.   

My son is coming home this weekend. I’m very happy about that. I’m also very happy that our relationship has been repaired. I’m not afraid of him anymore and when Thomas calls here from school he’s happy to talk on the phone with me and tell me about his day. True to Thomas form he will readily admit if he had a “bad day” and what his actions were to make it bad. Gotta love him for the honesty. He’s been that honest since he was small.

I’m sitting here happy that I have nothing to report depression wise. But as a result I’m not sure what to write about. Why does it seem easier to write about sad subjects than happy ones? When I was writing out my story of Thomas the words flew out my fingers while typing. I’d kept them pent up for too long. Now it’s like a weight has been lifted and I can look forward with optimism. I’m even debating going blonde again, but then again maybe I won’t. I’m fickle like that, always have been.

I’m feeling more optimistic about my business (www.nayaudo.com). Maybe I’m not supposed to be at the place yet where it takes off. I need to remember that I am not in charge here, God is and He has His own plan and His own timing.

Meds

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So life was really nice when Thomas was home.  As I mentioned in the previous post life wasn’t “easy”. Thomas is high maintenance, he requires a lot of attention. We were so very fortunate to be offered residential habilitation from the agency handling Thomas’ Medicaid and On Your Mark, a special needs organization that provides programs and activities called to say they had an opening! Thomas has been on the waiting list for years literally. It was an exciting time because so much was coming together.

I adored the Hungerford school and I loved his teacher, Connie. She even gave me her cell number in case I had concerns outside school hours. Incredible I tell you. The activity program at On Your Mark was wonderful. The staff there was unreal in that they were so, so, so good with the kids. I seriously could talk for hours about how wonderful the staff is at Hungerford and On Your Mark. Thomas went to an On Your Mark location every Saturday from 9:30 to 1:30. We were thankful as weekends are without much structure and Thomas thrives on structure so this was perfect. They did art, yoga, sports, cooking, etc… Wonderful and he really enjoyed it. It was a win/win situation.

The residential habilitation (res. hab) person started. Her name was Dee and she quickly became one of the family. I remember in the beginning Thomas was allowed 3 hours twice a week with Dee and she would come to the house. So we worked out a schedule and goals which included Thomas playing and working things out with his sisters. Dee really was wonderful. We trusted her and she us. All the girls loved her as well and she would include them in any activity or craft she worked on with Thomas. This went on for about three years. No aggression from Thomas. Activities in place and a wonderful res. hab. person. Seriously, what more could we ask for?

A couple of Thomas’ meds required regular blood draws to ensure the blood level was fine and/or to check that his white blood cells were at a normal level and not dropping. Twice when Thomas was at Andrus he had an issue with his white blood cells falling at a lower level but after a repeat blood draw they would be fine.

Now that Thomas was home, Dr. F took him on as a patient again. I was thrilled as I adored and trusted him. One evening after I had taken Thomas to have a blood draw, Dr. F calls to tell me Thomas’ white blood cells were low. Unfortunately this is a side effect of one of the medications he was taking at the time. I naturally panicked and Dr. F calmed me down saying we will contact the pediatrician and repeat the blood work. Thankfully Thomas is wonderful with blood draws. The test was repeated and came back normal, whew!

The feeling of relief did not last long as future blood draws showed Thomas’ white blood cells dropping to a level that was close to being unsuitable for the registry of this medication. Dr. F suggested we see a hematologist. I asked the pediatrician for a referral and an appointment was made. Dr. G was great. She confirmed that all of Thomas’ meds had the potential to lower white blood cells but the one in particular was well known for the side effect. She would monitor him to ensure the cells not get too low.

We saw the hematologist for the next 2 years, faithfully with Thomas having blood draws every 2 weeks sometimes every week at a satellite site connected to the main hospital where the hematologist practiced. I praise The Lord for giving Thomas the gift of tolerating blood draws in such an awesome way. He doesn’t flinch or give anyone a hard time.

Finally it got to the point where the white blood cells were remaining low according to the parameters set by the over-see-ers of this particular medication. Thomas remained in good health but Dr. F feared we would not be able to have his prescription filled. I had to present the blood work to the pharmacist each month for a refill. Dr. F suggested we take Thomas off the medication. I was hopeful as his behavior had been so good that perhaps we could do this and everything would turn out fine.

One could hope right?

Thomas is home

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Thomas was 11 yrs old when he came home to live from Andrus.  Due to all the home visits the transition was very smooth.   We learned a lot of the language from Andrus, eg:  if Thomas was having a difficult time we encouraged him to, “turn it around”, to present a time out as not a punishment but a positive action to remove oneself from a stressful situation.  It was not one method of therapy that gave Thomas success in controlling his behavior.  I know it was a combination of the therapies, the meds and the environment.  All those tools fit together when the amounts were found to be “right”.  

It was really nice having Thomas living at home, don’t get me wrong nothing is sunshine and roses always, but we felt complete. And due to the work at Andrus we were able to take family vacations and not fear a complete breakdown from him.

Thomas was still Thomas though, even though the aggression was gone he still perseverated over things (a total focus on one thing and talk about it over and over). This is just one of his many traits that make Thomas who he is. As a family you adjust and most times you don’t realize consciously you’re adjusting. It’s just the way things are in your family even though you know it’s not the norm of other families. But…those other families have their quirks too!

For 2 years Thomas attended Andrus as a day student while living at home. The bus picked him up around 7 am and he returned home usually around 4-4:30 pm. He never complained once about a long bus ride. Not once. There’s the resiliency again, he is gifted. During the spring of Thomas’ second year living home. I received a phone call from the principal of the day school that they felt they weren’t meeting Thomas’ academic needs due to his low IQ. I couldn’t argue, they were right. Truth is I didn’t even know where to transfer Thomas to. A typical junior high was out of the question according to my gut feeling and talks with a couple of people “in the know”. Then one afternoon The Lord steps in. Amazing.

Tommy was chatting with the loveliest neighbor we had. An elderly man who was almost the mayor of our block. Tommy was telling this man we needed to find a school for Thomas but didn’t know where. Our neighbor says, “Have you tried the Hungerfor School? My son in law teaches there and I think Thomas would fit in there, have Menay check it out”. Tommy literally runs home and asks me, “Why haven’t you checked out the Hungerford School?!” He tells me his conversation with the neighbor and I’m dumbstruck. Could such a place exist? God is good and his timing is impeccable!

The next morning I begin my phone calls. I ask to speak to the principal but she is one busy lady. When I do get to speak to her I explain the situation of residential school and now Thomas is a day student living at home, we need a new school, etc… I keep calling and request to see the school and when I go on a tour I’m amazed and almost speechless! This place has literally everything I’ve imagined for my son. Vocational training! Life skills! Oh my goodness. I request a meeting with the district and they change Thomas’ school to Hungerford.

I often think about how “coincidental” my husband’s conversation with our neighbor was, but it was no coincidence, no way, no how. When you stop “looking” for the work of The Lord you realize it’s all around you, that things don’t fall into place without his hands all over them.

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.