special needs

I used to think…

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Before I had my son I used to think kids who weren’t talking were never read to or talked to by their care givers, I used to think people who yelled at their kids were monsters and didn’t deserve their kids. I used to think having a child in a special ed class was a terrible “label” and it would follow that child where ever he/she may go and not with good consequences.
I used to think having a son who was labeled mentally retarded was the worst thing ever. So much so that I badgered a developmental pediatrician who wrote that in an evaluation report to also add an addendum that I as the child’s mother vehemently disagreed with his findings.

I used to think a lot of things. Used to. Then life hit with an impact. I had a son who was speech impaired for seemingly no reason when he was a toddler. I tried to read to him as well as you could read to a busy and disinterested toddler. I am a “yeller” or I was anyway. And I know I’m in good company because a lot if not most of my mom friends were yellers too. My son started receiving special education services when he was 3 years old. I swallowed my pride and accepted their “label”, little did I know that such a label is not a bad thing but a ticket to other services he was entitled to such as Physical therapy and occupational therapy. Today I encourage any labels “they” want to put on my son as it doesn’t change who he is to me, because with those labels now comes placement beyond the board of education. My son’s time being educated and cared for by the board of ed is coming to an end as of next year when he turns 21. New labels may be more appropriate for him as an adult.

I used to think depression was a state of mind and that one should just snap out of it or look around at all they have that is good in their life. I now know depression is a real chemical imbalance in one’s brain and there is no “snapping out” of it. You simply can not. Depression clouds all your thinking and makes you feel worthless no matter what riches you possess whether it be a terrific family or terrific wealth.

I used to think God was a mystical father figure only interested in us on Sunday mornings. I used to think Jesus was the son of God who died upon a cross; period. I now know with all my being that God is real; period. He is with us all the time and not just on Sundays. And that Jesus died for my sins and yours. I know now that His grace is sufficient. Jesus’ life and death and resurrection is the best example of love that I know. And I humble myself to follow him the best that I can.

People watching and being in the city

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I’m on my way to Manhattan this morning. I’m on the ferry and I’m people watching. I love to people watch, usually the subway has more interesting people to watch mostly because it’s a more diverse population than the morning ferry. On the ferry are mainly people going to work with the occasional college student here and there. The afternoon ferry is interesting because of the number of tourists. I love to tourist watch too.

I was in the city yesterday for work and I still can’t believe the location I’m at. Literally right across from the Empire State Building. It’s amazing and you never grow tired of craning your neck to see the top. I love it. I’m in the city today for an appointment with my therapist. I’ve “graduated” to every two weeks as opposed to every week. I’m okay with the new arrangement. Honestly there are weeks that I go and I have literally nothing going on to talk about, I’m just not ready to let it go completely. We discuss my small group bible study and some challenges that have come up. It’s good to have Nancy’s perspective and insight. So I am glad that I still see her.

I received a phone call from Thomas’ social worker yesterday. It seems a couple of agencies are interested in Thomas for group home placement. When Thomas is 21 next year he’ll go to live in a group home, this is the plan. However these agencies represent group homes in the Bronx, Brooklyn and Queens. Umm….No. We want him here where we live. And thank God his social worker feels the same way. She’s in complete agreement with us and already told me she will also advocate for Thomas to be placed here where we live. So I’m praying for there to be a space available when the time comes.

Tommy and I will pick up Thomas on Friday morning so he can spend Easter with us. I’m looking forward to seeing him. We speak often on the phone but it’s not the same. He’s really looking forward to coming home so I’m hoping it all goes smooth and anxiety free for him and us.

Happy Easter!

Taking me Back

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We started our small group/bible study the other night. It was a great turnout, around 5-6 woman not including myself and my co-leader. The women were amazing, caring and very open. I told my story of Thomas first. Because he’s 19 and and so much has happened in those 19 years I felt like I glossed over a lot of our journey and didn’t go into great detail. How deep in detail do you go when your head spins to just give the basic no frills version?

The members of the group did go into great detail about the lives of themselves and their children. I’m grateful and feel honored that they were comfortable enough to be so open. Their stories and raw emotion brought me back. Back to times that were really tough with Thomas. Emotions that were buried were brought back to the surface but not in a bad way. More of a “yes, I remember feeling that way… but it’s okay now…” And I was quick to get past the memory. I did a lot of nodding and “uh-huh’ing” in agreement of knowing how these women felt.  It’s nice to know I was never alone in my feelings. Even now so many years later the feelings I had are the same feelings these women are having now. It’s amazing. We’re all keeping in touch via email and text messaging; sharing doctor recommendations and keeping each other in prayer.

I left that night feeling incredibly fortunate that God has chosen to use me in this way. Fortunate and privileged to hear these experiences and be a part of their lives.

 

Thomas This Week

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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.

Snowed In

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Like most of the country on most of the East coast we’re snowed in. It’s not so bad the kid are older so there’s less fighting, note I said “less” fighting, not “no fighting”. Somehow a 14 year old will find a way to annoy the crap out of a 9 year old and vice versa. But all in all it’s been a quiet day.

I’ve been reflecting on my blog. When I started, my intent was to talk about being a personal shopper and write about all my wonderful thrift finds.  Well, I’m no longer a personal shopper, it didn’t take off as I’d hoped but that’s okay, God had other plans. My first entries are all about my thrift finds and trying to sell said finds. I wrote about my husband and then finally Thomas and and all we went through when he was a baby up to his life now.  In fact Thomas’ whole life story is here in this blog. (See July 2013 and scroll through, I don’t know how to link, sorry :))

I’m still thrifting. The thrift store is my happy place. No one bothers me there and it’s where I go to escape for a little while. I have my phone on me so it’s not like I’m unreachable.  I have a thrifting face as my daughter once told me. We were thrift shopping together and Alyssa stopped me to ask a question, I said, “What??” and she said, “Mom! You should see your face!” Some people have a resting bixch face, I have a thrift face.

I still write about Thomas, I’ll probably always write about him. I wouldn’t be who I am now if it weren’t for him. I had certain ideas and opinions of what it was like to be a mother as we all do *before* we have kids. Being Thomas’ mother humbled me in a way I still find difficult to describe. His many diagnosis’ opened up new worlds and new people into those worlds. People I never would have met and appreciated and loved had he not been special needs. If Thomas were born a typical child I would have grown to be a different person and I’m not so sure I would have liked her. This is not to say I wouldn’t give anything for Thomas to be typical. I just wouldn’t want to give up who I became as a result of him not being typical if that makes sense.

I still write about God and my Savior Jesus Christ. I absolutely wouldn’t be where I am without the Lord in my life. His love and direction keep me focused and have shaped me and brought me to spiritual places I’d never have reached without Him. My love of the Lord spills into my writing when I least expect it or intend it to. I guess that’s what happens when the Spirit takes over. My fingers start flying on the keyboard or on my phone and I can’t find the words fast enough to tell people how much God loves them. I wish for so many people I know to realize that God is real. Jesus died for them. And all they have to do is ask Jesus into their heart.

It’s still snowing.

 

 

 

Looking Back

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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.

 

A New Small Group in town…

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So the Christmas tree is up and shopping is underway.  I’ve gotten more shopping done than I usually do at this time of year and I’m glad to be a little ahead of schedule. I’m due to start a bible study/small group for mothers of children with special needs with another mom in January. I’ve already identified a book; a bible study for Mom’s of special needs children; I think would be a good fit. I still have to finish it myself so I’m not entirely sure yet. Plus I don’t have input from my co-leader yet. In due time I’m sure it will all fall into place. Or rather in the Lord’s time it will fall into place.

I’m excited to about to be a small group co-leader. To be able to share my experience of raising Thomas and how God has been there through the good the bad and the ugly. Yes God was there when times were horrible as well as when times were good. And it was only through His strength did I gain strength. I was even angry at God on more than one occasion.  I know He was still there and never left us. I know that’s why I was so angry. To know God was there and things were still so crappy. I only got over the anger when I actually met the Lord. And it was then that I really knew in my soul that He was there did my anger dissipate.

I’m excited to have fellowship with other Moms and talk about the Gospel. And how Jesus is still working miracles in our lives and will continue to always be there working and interceding for us. I know I sound optimistic. I am optimistic. We have a wonderful mentor in place who will be there for us in person and in prayer. That makes me feel more secure and confidant in this new role.  I have this month to prepare and pray and prepare some more and then of course pray even more. I’m honored to be used by God in this way. To God be the glory.

 

 

 

Special Needs and Grace

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I reread a book recently that I had read a few years ago. The name of the book is “Wrestling With an Angel” by Greg Lucas. It’s written by a father who’s son is special needs/disabled and how God’s grace is shown to him through his son, Jake. The book touched me in a profound way. And through it I’ve recognized God’s grace in my own special needs child.

Greg Lucas’ examples taught me to see God’s grace where you least expect it. There is one instance where Greg is giving his son a bath and for a few minutes his son completely relaxes in the water with his eyes closed, no anxiety or stress and he’s given a glimpse of what his son would look like if he were a typical young man. That is grace, a gift from God. I’ve had a similar experience with Thomas. I had a dream that Alyssa and Thomas and I were talking together in the front sun porch of our house. Thomas was a completely “normal” or typical teenager. I woke up from that dream feeling odd and I wasn’t sure how to process it. I remembered what I had read in “Wrestling With an Angel” and  I realized the dream was a gift. That one day when we’re all in heaven together Thomas will speak to me as a typical child, one with no disabilities such as speech impairment or mental retardation.  He’ll be able to tell me everything he isn’t able to tell me on a regular day.

Greg Lucas also tells of his testimony of being led to the Lord by his son. Jake was 2 years old and suffered from terrible, constant seizures. One evening Greg completely surrenders to the Lord. He cried out to God and begged Him to take over, not just Jake’s illness but his entire life. That touched me because my son led me to the Lord.

When I returned to church and was saved, when I gave my life to Jesus; my life was “fine”. Thomas was living home and doing well. We had many supports in place and Thomas had recreation programs that he thoroughly enjoyed. The girls were also doing well. I met the Lord however because of my son. Thomas was in and out of the psychiatric hospital. I was so angry with God. Why? Why? I would ask and I didn’t receive an answer that was suitable. It was only when a friend (thank you Toni!) suggested I listen to “Praise You In This Storm” by Casting Crowns did I finally break down and realize Jesus was for me not against me. That He did indeed hold every tear I cried. It was at that moment God showed me His grace and my anger dissipated.

There are many more ways that God has shown Himself to me through my son. People who have come into my life who otherwise would not. Situations that would never have come about if not for the Lord. And I owe Greg Lucas’ book for showing me how God’s grace is manifested in my son.

 

 

The holidays are here!

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Well officially Thanksgiving in about 4 more days. I’m not sure how I feel about the upcoming holiday season. Am I dreading the actual Christmas shopping? I don’t know yet as I haven’t even started, no actually I have started, the gifts haven’t arrived yet via our wonderful postal system I almost forgot about them. One gift I did buy my husband I do actually have here in the house…hidden, haha!

Every year we jump through hoops trying to figure out what to buy our son Thomas. He loves opening gifts. However he isn’t the easiest person to buy gifts for. He’s not one to actually play with any toys, even when he was younger he didn’t really play with toys. Now that he’s 18 it’s more difficult since he isn’t a typical 18 year old young man. I also have family calling me for ideas of what to buy him and they usually are told “I don’t know” in response. Hopefully with Thomas home for Thanksgiving we can pry something out of him or maybe we’ll hit the jackpot and find out multiple “things” he’d like.

We put our tree up the day after thanksgiving. A Thomas tradition. He loves to watch me put the tree up and help. He is a great helper. He’ll carry boxes down from the attic and hang ornaments on the tree. But he won’t rest until all the decorations are up and/or out and in their respective places. I used to dread putting up the tree because Thomas will fixate on it, no one would rest until the darn tree was up. What? You want a “break”?? I don’t think so! But he’s mellowed a bit; either that or our patience has increased. It’s probably a combination of both. These days I don’t dread it, I actually look forward to putting up the tree. It wouldn’t be the same if Thomas wasn’t helping me.

I’ll never forget the one Christmas right after I had a miscarriage. I didn’t want to celebrate anything never mind put up the dang tree. Thomas and I brought the tree down from the attic and I started stringing the lights. I tested every strand of lights before putting them on the tree, then…Of course half the lights wouldn’t work once they were actually on the stupid tree and I literally had a half lit tree. It was horrible. I took all the lights off and threw them away and declared that unless we went out and bought a pre lit tree I wasn’t putting up a tree at all. Fast forward to all of us in Sears debating which pre lit tree was best for us. My husband is the best.

So this year we’ll buy a “real” tree and I’ll string the lights and Thomas will direct and supervise as usual. I’m looking forward to it.

Birthdays

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thomas and me birthday

My Thomas celebrated his 18th birthday this past week. It kind of blew me away that my first baby is now 18 years old. 18 years. It truly seems like yesterday I gave birth. I guess it will always seem that way no matter how old my children get. But 18…man! That’s a milestone. And what an 18 years it has been. How different things would have been if Thomas were an average “typical” child. But that’s not how God wanted it, planned it. It’s taken me a long time to accept that fact. That no matter what I did or didn’t do during my pregnancy and what the midwife did or didn’t do during Thomas’ delivery, The Father was/is in charge and was overseeing everything so that His plan was the one that played out.

It’s hard not to imagine what life could have been like had Thomas not been born the way he was. I like to tell myself there are no guarantees that he would have been a walk in the park. There’s no way of knowing if drugs would have been an issue. Would he have been extremely rebellious? Cutting school? I don’t know. I had a dream not to long ago that Thomas was completely typical. We were sitting together with Alyssa and talking. I don’t remember what we talked about but it was amazing and took me all day to get over that dream. My husband has had a similar dream as well. Was that a gift from The Lord to show us what to expect when we are no longer a part of this world? That there is a part of Thomas He has yet to reveal to us?

18 years old. 18 years of loving this child, fighting for him, changing who I am at my very core, my soul. Being who Thomas is changed me for who I am. I know that was part of The Lord’s plan as well. Amazing isn’t it? The domino effect.

We had an awesome family celebration for Thomas at a local restaurant by his school. Practically the whole staff came out to sing him Happy Birthday. Thomas was overwhelmed and almost hid behind Tommy. I stared at this child of mine. He’s still and always will be my “child” but now he’s a young man. The Lord will continue to work in us and He will continue to give us “gifts” that will glorify Him.