I’ve been thinking about Thomas lately. He ended up in the ER/Urgent Care the other night for an infection on his leg. He’s fine but did have to have a dose of IV antibiotics. That got me worried a little being that I’m not there nearby but I know he’s in good hands with the nursing staff and residential staff. I have to trust them.
I’ve been thinking of the road we’ve traveled with this son of ours. It hasn’t been an easy one. Many doctors, psych hospitalizations, many med trials and finally residential placement not once but twice. Residential the second time was “easier” because the situation was so dire and my safety was becoming more and more at risk. The school district cooperated with no need to hire a lawyer like the first time. But that didn’t make it a walk in the park. He’s still my son. And my ideal life for him wasn’t for Thomas to live somewhere other than his home, with people other than his family.
My ideal scenario was for Thomas to stay home until he graduated school at age 21 (special Ed students are educated and receive services until they are 21 yrs old). I then envisioned the perfect group home placement close by to where we live. This is not the reality obviously. Our reality is that we are unable to meet Thomas’ needs here at home, he lives an hour away and I pray for group home placement on Staten Island and not an hour away when he turns 21.
In as little as a few years ago I felt like a failure to Thomas. I’ve written about this in the past. I had distinct visions of me one day meeting our Father in heaven and him being disappointed in me, shaking His head saying, “I gave Thomas to you, what have you done??” I no longer feel this way. I know Tommy and I did the best we could with the situation we were given. I know I haven’t failed him as a mother. To quote Maya Angelou “We do the best we could with what we knew, when we knew more we did better”. I’ve had people ask me if that quote was an excuse for doing a bad job. My answer is no and the quote is quite simple and true. It puts my mind at ease as Thomas’ mother because the more I knew about my son and his diagnosis’ the better I did at getting help for him.
My other favorite quote is a bible verse from Romans 5: “3Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4and endurance produces character, and character produces hope, 5and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” My suffering has produced endurance, I have character. I certainly have hope and I know I have God’s love.
I’ve been doing this bible study specifically for moms of special needs children (the name of the book is a Unlocking the Treasure by Bev Roozeboom ). It’s really got me digging deep in my faith which I guess is what it’s supposed to do. It also asks a lot of questions some meant to be shared wth a group, others not to be shared. And I tell you a lot of what this woman writes really brings me back. Back to when Thomas was very young and many things were new. Like the first time I ever heard the word “retarded” pertaining to my son who was 3 yrs old at the time. The doctor who told me was so very cold and blunt. No bedside manner at all. I refused to accept it and insisted this cold hearted man write an addendum in his report of how much I vehemently disagreed with him. I knew there was something wrong with Thomas but to tell me he was mentally retarded told me nothing but an IQ score. It didn’t tell me why he hit all the time and threw terrible tantrums or why was speech impaired.
In the bible study Unlocking the Treasure the author asks if anyone showed you compassion when you realized your child was special needs. The day I was told l that my son was “retarded” one of my husbands best friends brought me flowers and took me to a movie; a comedy. When I look back it was exactly what I needed at that time and an act full of compassion.
This study is also full of how much The Lord loves us. It’s mind blowing and humbling all at the same time. That the God of our universe loves us and wants us to seek him…I think of how much I love my children, how much I love Thomas after all he’s put me through. God loves me more than that. It’s hard to grasp His love for us and wrap my brain around it.
They are upon us…Thanksgiving in a couple of days and then we blink and it’s Christmas. Tommy will be picking up Thomas tomorrow to have him home for Thanksgiving. He’s totally excited to come home and it’s really sweet. He called me this past Sunday morning~early, to confirm the day and time of pick up and that it would be Tommy doing the picking up. Thomas also called Tommy the night before to confirm the same. The boy is consistent.
The day after Thanksgiving “we” (meaning Thomas and I) put up the Christmas tree. Rather I put it up and he supervises. Friday morning Thomas, Tommy and I will go out to get a live tree and when we bring it home, Thomas knows exactly what to do, what goes first, that I need to test the lights, and hey where’s the stand, the star for the top and the skirt for around the tree on the bottom?? The girls will get all into the ornament decorating after a while and the whole thing usually goes very smooth. The only thing that gets exhausting is going up to the attic a million times that day. And Thomas will usually be on to the next phase of decorating after the tree is finished.
This year I’ve managed to get out of Thomas what he wants for Christmas. I consider that a personal victory because every year it’s a struggle to buy him gifts and we usually don’t have a clue to tell family what to get for him. Aside from all Thomas’ issues he’s really an easy going guy and really doesn’t want for much so when he does mention something, anything that he would like I make sure I’m paying attention. For Thomas’ birthday he received a television for his room at school. The TV has a DVD player, Thomas asked for the Spiderman movie on DVD and a new Nintendo DS with a couple of games. No problem! After I finagled that list from him, he then says, “That’s enough Mom, no more…I don’t want anything else” How do you spoil someone who won’t let you? You gotta love him and that way about him.
So here’s to a Happy Thanksgiving and a smooth Christmas tree decorating!
I love hearing other people’s testimonies, hearing how the Lord led them here or there, how He has worked and continues to work in people’s lives. I’ve shared my testimony here on my blog about how I met the Lord while crying and listening to “Praise You in this Storm” by Casting Crowns. Lately I’ve been thinking of how God works in my life every single day. How He orchestrates literally everything and every circumstance. How He hand picked and chose every one of my children for me. He knew He was going to give me Thomas and how difficult it was going to be to raise him. He also gave me my girls; Alyssa, Daniella and Samantha knowing how “typical” they would be. Don’t get me wrong the girls been challenging in their own ways but they are nothing like the challenges we’ve faced with Thomas.
I love how God made Thomas so resilient, that when he was 8 years old we had no other choice but to enroll him in residential school for the first time. Thomas did not want to leave us but he did it. He said goodbye to us after every visit, many times in tears but he would bounce back and adjust to his new “home”. He’s adapted even more wonderfully to the school he attends now. I credit God with gifting him the ability to adapt to new surroundings so well. No one else could have known Thomas would need such a gift and there is no way his resilience could be learned.
I’ve been thinking about the Gospel a lot lately too. No matter how many times I think of or hear the Gospel I am so humbled to know that Christ died for us. And the way He died; brutal. I am struck at how much God loved us that He gave up his son for us. Sometimes it’s more than I can think about and wrap my brain around it. I not only believe this, I know this to be truth. It is absolute and it saddens me when people don’t get it or stay away from the church. I don’t know how to spread the Gospel outside of this blog. I’m not one to loudly proclaim it even though I know the truth in my head and my heart. I wish I were more bold in person but maybe this blog is how God wants me to be bold.
Thomas has been in the residential school now for just over 3 years. I was thinking back to when he was living at home. He was only able to live at home for about 3 and a half years between the first residential school (from ages 8-12) and the second (ages 12-16). It was nice having him home for that time. His meds were stable, Thomas himself was stable. We were able to do things like a “normal’ family. Even go on vacation and/or to the beach.
At the beach Thomas loved to look for shells, he did not like the water at all. In fact at one outing to a beach in NJ with my best friend and her daughters I actually lost Thomas. He took off without me looking for sea shells and when I looked around for him he was no where to be found. I felt the panic rising up. My best friend helped me look but all we saw was a sea of beach goers and not a sign of Thomas. I knew he didn’t go in the water but where the hell was he? Every story I ever heard of people hurting those with special needs ran through my head. And I felt sick. I wanted to throw up. I couldn’t imagine how I was going to tell my husband that I lost our son. I figured I couldn’t go home and I would camp out at the beach until I found him. Eventually I grabbed hold of a life guard and explained the situation. They radioed down the beach and it just so happened another lifeguard had happened upon Thomas thinking he was lost. The lifeguards radioed to each other I was told to walk down the beach to a certain station and they had Thomas. As I was walking/running down the beach I saw Thomas walking with a very attractive and fit female lifeguard. His face lit up when he saw me, it was all I could do not to cry. I took custody of him and as we started waking back to where our things were, I teased him saying he wanted to hang out with the “pretty lifeguard” he smiled and then said, “Mooooom! You left me!” I laughed and told him I didn’t leave him; he left us by looking for shells. It really didn’t matter at that point, I was just glad to have him back.
With Thomas the way he is now I don’t see us going to the beach without extra help meaning one person just for him to watch him and keep him occupied. That is if we could even get him to the beach. Towards the end of Thomas living at home vacations with him were not fun. After changing meds because of a sharp decrease in his white blood cells, Thomas was not as stable as he was in the past. His behavior had changed and he became very stubborn. Even refusing to get out of the car when we arrived at the beach. When we did manage to get him out of the car he refused to even look for sea shells and he refused to leave the beach chair with umbrella bought especially for him.
I miss walking on the beach with Thomas. Trying to bribe him with a dollar or two or five to get his feet wet. The answer was always, “No” but with a smile. He has a great smile.
It’s funny when there’s no one specific diagnosis for your child. There’s no banner to wave or cause to support. No dinners or fundraisers or awareness day. Specifically my son. Thomas was first diagnosed with bipolar disorder shortly before his 6th birthday. This was the first diagnosis to try and explain the behaviors we were dealing with. And it made sense at the time (still does for some behaviors). About 5 years ago we saw a well respected neurologist who in combination with Thomas’ history and test results (MRI, IQ tests, etc…) declared our son as one with “static encephalopathy” which is short for brain damage that won’t get worse nor will it get better.
I covered these diagnosis in the very early entries of this blog but I don’t expect anyone to remember, if you do I’m impressed :). Anyway I find myself sometimes envious of those parents with specific diagnosis. Not envious of the specific diagnosis believe me I don’t think any special needs parent has it easier than any other special needs parent.
I think I know what I sometimes miss as Thomas’ mother. When he was first diagnosed bipolar I dove into an online support group and found the most wonderful people there. The support I received was second to none and the people were so full of compassion. They had knowledge either learned first hand or they were very well read keeping up on all the latest literature. I even attended a fund raiser with one of my friends (Diane) and we had a ball. These days with Thomas not living home and not being “exactly” bipolar I don’t feel identified with any such group. I still adore and keep in touch with the people I met but we don’t just see our “kids” as just with bipolar, we support each other as parents on a similar journey. As parents period. Parents who have a child with special needs. Overall I think that’s what it should be about. We’re all parents dealing with situations outside the “norm” when raising our children. We all have similar feelings about certain situations. There are many universal emotions we all go through. Although, to play devil’s advocate to myself I do understand certain disorders/diagnosis do have specific issues only another parent or care giver would understand. On the other hand, one of the best conversations I ever had was with a woman I had never met. I was given Jeanette’s phone number so I could speak to another parent who’s child was aggressive to her and they had to place their son in residential care. Jeanette’s son is autistic, but diagnosis didn’t matter one bit. We met and bonded over similar behavior, similar emotions, similar fears. We spent over an hour on the phone talking and even laughing.
These days with Thomas away at school I don’t get many opportunities to talk with other parents like I used to. His school holds events here and there but we’re not always able to go due to the distance and the girls’ schedules. Some days I miss being a part of that “group”.
Check off one more thing I never thought I’d be doing, filling out paperwork to become our son’s legal guardian. Thomas turns 18 this year. I dislike dealing with this stuff even though I know it has to be done to protect him. The fact that he is going to be 18 years old is enough to blow my mind all by itself.
This isn’t a poor me/pity post. I’m in awe of where the years went. When I was in the thick of fits and tantrums and running from doctor to specialist trying to get help time seemed so slow…it dragged to be honest. I remember the first time we had an “official” diagnosis, Thomas was just about 6 years old. How the heck did I get through 6 years of no answers? Somehow I did it.
Now today I look at the papers for legal guardianship and I’m amazed that we all made it through the past 18 years. I know I couldn’t have made it through the past 5 years or so without God in my life. His hand is on our lives and for that I’m so very grateful. Without The Lord I know Thomas wouldn’t have been admitted to the school he attends now. The fit is so right. Things don’t just “work out” that way without His control being asserted. His path and way cannot be denied.
I know when I stop procrastinating and really sit down with my husband and fill out the guardianship papers we will need help and guidance and I know we’ll get what we need.
Acclimated that is what my son has become to his school. Or should I say his “home” now. It’s odd to think of your child calling somewhere other than your home *their* home. I’m not complaining and surprisingly not upset about it. But my son is most likely more comfortable at his school/home than here where his family lives. I noticed this past week that when Thomas is asking to come here, he doesn’t ask to “come home” he asks for “a visit”. I respond in the way he asks, that yes he can have a visit. I notice I don’t say he’s “coming home” either.
So this is probably item number 856 of things you should know as a parent of a special needs child who needs residential placement. Some days I wish I journaled the first time Thomas was in residential. There are many instances that stand out bright and unmistakable but I wonder what didn’t make it in the memory banks. I know we felt very empty when he went the first time. This time it wasn’t emptiness. Relief was there as well as disbelief and I know I was glad to be able to feel safe in my own home and know Thomas was in a safe place as well. The first time he was so young but back then I wasn’t worried about his age as much as his behavior. We just wanted him “fixed”, make him well that he can come home again. And they did.
This time, residential is not to fix Thomas it’s permanent, we cannot provide for him in our home. He isn’t safe to live here anymore. Heavy huh? Again, I’m ok with this. I don’t like it, not one bit. I’m still his mother. But things are what they are.
So I guess one could say we are acclimated to Thomas in residential too. We’ve made our home very comfortable for “us” who live here at this home. We’ve shifted and adjusted and have become acclimated to one of our family living elsewhere. Almost dare I say “normal”? Or whatever normal is. One of my favorite people used to say, “Normal is just a setting on a dryer” and I would laugh. But it’s true.
This past Friday morning I drove to Thomas’ school to pick him up for a visit . While I was waiting for him in this area that resembles a living room, there was a group of people visiting the school. 4 people. Of course the people watcher in me was intrigued. There were a mom and a dad, a social worker (she mentioned she was an MSW) and another male figure who gave no inclination as to who he was in relation to the parents. I get so nosey when I see parents doing what Tommy and I did but these people have “back up”. You see every time we had to hospitalize Thomas or visit residential schools we did it alone. Just Tommy and I. No social workers, no case managers visiting to give their input or questions that may have been helpful. Actually just to have another shoulder to lean on may have been nice. But then again I say this now. In retrospect. Honestly its funny because Tommy and I never felt “alone” during those times, we were fortunate enough to have each other. I guess I wonder if the grass is greener having other people involved with you making these decisions. Or is it more confusing because unless you are that child’s parent you are not as invested as to where that child is placed.
I shouldn’t say Tommy and I were “alone” as we certainly had The Lord with us, leading us and making His way for the school Thomas were to attend.
So after my people watching incident, Thomas was brought to me and we were on our merry way home. The visit went well in the beginning but by the end of Saturday things were starting to crumble. Not in a horrific way Thank God but in a way that only solidifies our decision for Thomas to attend residential school. Tommy drove him back Sunday morning. Later that day, Tommy and I discussed together how do you parent a kid like him? Since Thomas was a toddler you could give him what ever he wanted and he would still throw something at you or have a fit. These days you give him what he wants and he almost dismisses it once he obtains whatever it was he wanted and he’s on to the next “thing”. It’s exhausting. Not only that but we still realize we cannot leave him alone with me. There was a part of me that was hoping that would change but it has not. There was no aggression at this visit but the signs are still there that he will target me for no particular reason. Thomas will also be somewhat defiant and its not easy to reason with a 17 year old “kid” you don’t have the control over you did at say age 10 (not that we had much control over Thomas at that age either). It’s a bitter pill to swallow about your own child. This isn’t a pity post. Its the truth and it’s our life.
This makes me realize how huge God is and how He has given us so much direction and so much wisdom in dealing with our son. I always pray for a hedge of protection for Thomas. Although one could say I could easily pray for protection for me when it comes to Thomas. But I don’t. I pray for protection for him so that whoever is teaching, guiding or working with my son will do so with the wisdom and maturity my son needs. If I can’t be there Dear Lord let there be people who are there that know how to handle him. I know the Holy Spirit is well at work ensuring those things happen.
Like most mom’s I can remember just about all of my first child’s everything. Especially when that first child is not a typical child. When evaluations and professionals become involved *and* you knew something was wrong to begin with you tend to remember everything. I remember Thomas didn’t walk until he was 15 months old, yet Alyssa walked right around 13 months. I’m talking walking independently, steps if you will.
When Thomas was around 13 years old I think, we were referred to a well known and respected neurologist for a consult. I trusted the doctor the referral came from so I made the appointment and Tommy and I went all the way uptown NYC, like you can’t get any further uptown, Manhattan. We even paid out of pocket to see this man. Somehow Thomas’ history and “packet” was lost and I about lost it crying, I was also upset because Tommy took a day off work for this appointment. The doctor agreed to see us anyway and I had to give Thomas’ whole history, his past 13 years of milestones, hospitalizations, medications (both trialed and in current use), other specialists verbally. I could not believe I remembered literally everything. Even the doctor was impressed. These days I don’t know if I could do it again but then again I don’t “have” to. All this comes to mind because we have to begin the process of guardianship for our son. Long story short, it means we will still be Thomas’ guardians even though technically he will be an adult when he turns 18 this year. We are doing this to protect him so he won’t be a target for any unscrupulous people looking to take advantage of him. It also is because Thomas will never be able to fully make responsible decisions for himself so Tommy and I will until we decide the state will make those decisions or one of his sisters many years from now.
You don’t think of these things when your special needs child is young. All you want to do is get through the day or at least get through the hour depending on how your day is going. I say I don’t miss when my kids were young and I don’t. However I do miss *my* innocence, my hoping that Thomas was going to get better or we would find the magic combination of meds to contain out of control behaviors. That very important neurologist put all that hope to rest when he told us Thomas was brain damaged and would never get “better”, nor would he get worse. But… through it all he’s still my Thomas and still will be when we assume guardianship for him.
It’s been 2 years since Thomas has been hospitalized and we realized he couldn’t continue to live at home anymore. 2 years of adjusting to a new normal, me going on meds and in therapy. He’ll have been in residential 2 years this coming summer when he turns 18. These upcoming milestones aren’t the ones we thought we’d be making 18 years ago or 16 years ago when Thomas took those first steps.