parenting special needs

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.

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.

Life goes on

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Thomas was accepted to the Andrus school.  Tommy and I were as happy as we could be with this news.  It still meant our son was going to live away from us.  We were so hopeful they would be able to help calm the aggression, help Thomas be more independent, hopefully lead into some sort of vocational training.  Yes I know he was only 8 years old but somewhere inside me I knew he wasn’t going to progress very far academically.  In retrospect The Lord presented me with that truth many years earlier.  

We had the date of admittance and also a list of suggested clothes and how many pairs or socks/underwear, seasonal appropriate clothing only due to lack of storage. We did however need to think ahead as summer can quickly turn to fall and Andrus is an hour north of us. I had purchased Thomas new socks and underwear and sat down on the floor in his room with a permanent marker all set to mark his initials on all his clothing. Writing “T.O.” on every piece of my son’s clothing hurt my heart. I held back tears until they couldn’t be held back anymore. I called Jackie, one of my best friends in Wisconsin for support. I seriously couldn’t believe I was doing this. I felt almost robotic at some points in time. Just doing what I was told, following directions so Thomas would have what he needed because I wasn’t going to be there.

We had already told Thomas about the school and that he would be living there. He was with us when we did all the visits over the summer so he was aware. Thomas walked in on me marking his clothes and he asked why? I explained that the staff would know his clothes because they all had a “T.O.” on them and I reinforced that he was going to live at the school. I remember he seemed okay with all this. I was a mess however.

The day arrived and Tommy and I drove Thomas to Andrus. Alyssa and Daniella came with us. They were able to see the cottage and know where he was going, nothing was to be a mystery. I remember meeting with the medical staff and I felt very defensive. I was instructed to bring with us all of Thomas’ medications. I did so and had to tell the nursing staff not to follow then directions on some of the prescription bottles due to dosages being changed by Dr.F. I knew Thomas’ dosages better than the back of my hand and relayed all of them. I also told the staff to call Dr. F. if they wanted to double check or hear the dosages and meds straight from his mouth. I know workers in this setting see all sorts of situations some are abuse cases and child protection is involved. However it was clear we were an intact family and I couldn’t help being as knowledgable about my son and his meds as I was. It was who I was at that time. I could answer just about anything about my boy concerning his diagnosis, medications, reactions to meds he tried and why they were stopped. You ask it, I could name it. I felt that the staff was looking at me sideways. Maybe I knew more than the average mother, I don’t know. At that time I felt as though every mother should know what I knew if the situation were similar. God gave Thomas to me to take care of and I was trying my best to not let Him down.

It was in the medical building we were to say goodbye to Thomas. It was difficult and tearful and heartbreaking and hard and necessary.