parenting special needs.

Hospitals and People Placed In Our Lives

MenayOLeave a comment

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.

My Church Family

MenayO1 Comment

I can’t write about the ambulance incident without mentioning my church family.  I emailed, Louise a dear friend who was running the Bible study I was involved in.  In the email I told her what had happened.  She  was wonderful and very supportive.  Louise then asked if Tommy and I would come to the Wednesday evening prayer time so the Pastor and anyone who comes could pray over us.  We found a friend to sit with the kids and Tommy and I went.  

When we arrived at the church we sat in a pew and I just cried and cried while praying.  I was giving thanks to The Lord.  After that whole fiasco I gave thanks.  For without Him I am nothing and I have nothing.  I was thankful for my husband that he is who he is.  I was thankful for all my children and I was thankful for the church.  At some time it occurred to me that God may not give us what we want but does give us what we need. I needed an ambulance and emergency workers so I was sent the most compassionate professional police and EMT’S that were working that day. I needed the courage to dial 911 for my out of control son, He gave me that courage.

After we all prayed separately we approached the alter and Pastor Paul gave the most heartfelt, incredibly touching prayer for us. His words were perfect and spot on. It turns out Louise didn’t tell Pastor Paul what happened, she forwarded my email to another Pastor at our church. Pastor Paul had no idea about the aggression and ambulance until prayer was over and Tommy told him. The Holy Spirit worked through him and gave him the words we needed.

To me our church family is nothing short of God’s work. To arrange the people who were virtual strangers before to be involved in our life is something only He can do with such perfection and grace.

Meds

Aside MenayOLeave a comment

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

Aside MenayOLeave a comment

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.

Advocating

MenayOLeave a comment

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

MenayOLeave a comment

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.

Life Really Does Go On

MenayO2 Comments

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.