parenting special needs.

Playing it Safe

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I had the pleasure of attending an amazing Hillsong United concert last night.  They were incredible and so full of energy!  Not only was the music great but the “talking” part was wonderful as well as it was all about Jesus, some prayers and some preaching.  No matter, it was all good. 

While thinking about the concert and how open these artists are with their faith I admire them and anyone else who does not play it safe for fear of rejection, persecution, hatred, etc… I like to think I do not play it safe but I don’t believe I’ve ever been in a situation of defending my faith. I’m fortunate to live in this country and I’m free to worship God. I do enjoy declaring that I am a Christian and try to live as one.

I admire my 12 year old daughter. For the past 2 years in middle school she has challenged her science teachers when they teach evolution and/or the “Big Bang theory”. She asks, “What came before that?” And she’ll repeat herself until the teacher doesn’t have any answers left. I admire her tenacity. I don’t know if I would have been so bold at that age.

I guess this boils down to boldness as well which I’ve discussed in a previous post. I don’t want to play it safe. And I’m thinking me writing this blog could be my way of being bold. I’ve written things here that I’ve barely spoken about. I believe with all I am many times what I’ve written was directed by the Holy Spirit as I wouldn’t start out as passionate as I’ve ended. I guess that statement would be a testimony to the work of the Spirit in my life.

I also believe the Holy Spirit immensely enjoys guiding us to do, say or write things that bring Glory to God. Giving us the words to say or actions to perform. I find Him fascinating and I’m so grateful to have seen The Spirit in action first hand. It was the Holy Spirit who directed me to pick up the phone when the one residential school returned my call and actually spoke to me about my son. This is the school he now attends.

To reply to my own thought; To “play it safe” would be denying the Holy Spirit. That’s how I see it anyway. Rebelling against his pushing and prodding to do something or the right words to say or write. What God the Father actually wants you to do as per his will and plan. Many times I wish there were a clear written letter or directions from the Spirit. However it’s been my experience that one just knowswhen The Spirit is at work.

Another meeting

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I had a teleconference meeting yesterday with my son’s school to discuss his progress and goals for the next year.  To start off I am very happy with this school.  They know my son and that by itself goes a long way.  His future goals are pretty much a continuation of last year’s or should I say they are building on last year’s goals.  Right now Thomas “works” at a Goodwill not far from his school, does his laundry with supervision at the laundromat and shops at the supermarket also supervised. His teacher stressed to me that if they are at say the library and Thomas has a question he is directed to ask the librarian, same with the supermarket, etc… I love that they are promoting independence. I know there is no way I could have done these things with him and keep an eye on our youngest and hope Thomas doesn’t get aggressive. I know the school setting is very different than our home setting, they have structure, back up and staff available. I don’t.

After the teleconference I did feel a bit sad that this is our reality. Thomas’ reality. I don’t regret the decision for residential school. His placement alone is testimony to The Lord. As thrilled as I am with Thomas’ progress and placement there’s still that pain there. Sometimes it is more dull than other times. But it’s there. I don’t think it will ever go away.

Speaking of The Lord and meetings I had an experience a week or so ago that left me not knowing what to make of it. I was driving home with the girls and the Christian music station was on the radio. I was listening to the music and thinking how wonderful it must have been to be a disciple of Jesus back then. To have heard Him teach and be witness to His kindness and forgiveness firsthand. To be able sit close and be able to touch Him. I can’t describe how incredible I think that would be. The next thing I knew I had a crystal clear image of me sitting next to Jesus. We were on the ground near boulders in a green field. He was speaking but I don’t know what he was saying, I was intently listening and in awe of Him. Then, I was “back”. I never took my eyes off the road and I wasn’t daydreaming. I felt as if He met with my soul if that is possible. And the joy, the joy I felt was similar to when I met The Lord the first time when I was stopped at a red light.

There is nothing like that joy and I don’t want to forget it. At first I was nervous to share this experience but thinking more, I’m not. It’s my experience and there has to be a reason it hasn’t been revealed yet.

Our Anniversary

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On November 12,1995 two best friends were married.  Today is our wedding anniversary.  Today is the day 18 years ago Tommy and I became Mr. and Mrs.  I don’t mean to sound corny but I am proud of us.  I don’t know what the future will hold but the past 18 years seemed to fly by.  I remember us lying on the beach on our honeymoon saying we should save up to go back to Hawaii on our 10th anniversary.  10 years seemed so very far away.  We had no idea Thomas would be who he is nor did we have a clue we would have had 4 children.  Thomas was born that following July.

Speaking matter of fact, I’d have to say Thomas was our greatest challenge during our marriage. We had no idea what we were dealing with during those early days. We were young and he was our first child. I know we were guided by the Holy Spirit. I know because there is no way we made it through through that time in our own strength.

I’m excited to celebrate 18 years. I know it’s not a “milestone” like 20 or 25 years but it’s a milestone nonetheless. I can’t say I never thought we would make it this long, I didn’t think that at all. To be honest aside from our honeymoon and mentioning the wish to come back to Hawaii in “10 years” we never discussed future anniversaries or how we would celebrate them. Maybe that’s how we get by; putting one foot in front of the other and not taking the next day or year for granted. I know raising a child like Thomas had that effect on me personally as I never know what the next moment would bring never mind the next day, week or year. I took one day at a time with him, sometimes one hour at a time especially when his behavior was challenging.

I love my husband probably more now than I did 18 years ago. We were 25 years old when we said, “I do”. I believe we have both grown as people and I know Tommy has taught me so much. About myself and about the world in general. I only hope I’ve taught him something as well.

A Meeting

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Meeting the Lord.  I remember the first time I met The Lord and I treasure that memory.  Treasure it as I should.  I figured it would be a once in a lifetime meeting but I was wrong.  I didn’t know you could meet The Lord more than once and I am in such awe of Him.  The feeling of peace and excitement after you realize what just happened is almost indescribable.  It makes you fall in love with Him all over again and wonder how you ever had moments of doubt.  

The first time I met The Lord, I was in my car as I was stopped at a red light about a mile from my house. I was listening to the song “Praise You In This Storm” by Casting Crowns and I was crying my heart out. Thomas was back in the hospital and I was so angry and tired of it all. Most of all I was angry. As the song played the lyric, ” and every tear I cry you hold in your hand…” gave me a distinct vision of Jesus standing behind me cupping his hand to gather my tears. My anger faded and I realized that emotion was gone. This really happened and I then understood what it meant to meet Him. He truly meets you where you are. And until that day I didn’t understand that concept until it happened to me that morning sitting at a red light.

I love writing about The Lord. I love looking back at memories a year ago, 5 years ago, even the past week and recognizing when His hand was blatantly at work that there could never be another explanation. When the Holy Spirit moved and things happened.

I wrote my last post about boldness and wishing I were more bold. I still wish that and when I pray I ask for boldness. God is amazing and I know he has a plan.

The Who’s and Why’s

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There are many times I feel unsure of what to write. I’ve visited the sites that give you ideas (thank you Rob), but I don’t think they are “me”. I like to write about what is on my mind even though whatever that topic may be might not be as interesting to a reader as it is to me. Then I ask myself who am I writing for? Myself or an audience? This blog has been extremely therapeutic for me. I’ve never been so honest about our life with Thomas. I never thought I’d be so honest about dealing with depression and medication and therapy. I never thought I’d receive the feedback I did because of my honesty. So I guess I’m writing for me and an audience even though I know my audience varies from time to time.

When I look back to a year ago I thought I was doing “well” handling the depression. I can see now the difference a year makes. Last year I was not doing well at all and I thank God I can see the difference today. A year ago had I ran into the mom I wrote about in my last post I probably would have broke down in tears explaining Thomas in residential school. I didn’t even come close to that the other day. And as an added bonus, Janice told me I looked great. We all know what an ego boost a compliment is.

I truly wonder what I will be reflecting on a year from now. I pray it’s the take off of my business but if not it will be ok as right now I know it’s in God’s hands and if He feels it’s not to be then it is not to be and God will have other plans for me.

Another Mom’s View

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This morning I ran into a mom I met through one of Thomas’ recreation programs.  Her name is Janice and she’s such a nice person.  Her son is not as high functioning as my son and she works so hard to make sure he is in the correct programs.  Her son is in his early twenties I believe.  Anyway, it was so nice to see her, I told her Thomas  wasn’t attending the recreation program anymore as he’s now in a residential school.  Her face immediately changed and she said to me, “You love your son so much that you did this for him, you got him into a residential school for him. You and your husband made that decision and I know it was hard. You really love him. I don’t think I love my son as much because I can’t let him go.” Turns out Janice’s son was in a residential placement a few years ago but she was very unhappy with how he was treated so she took him out.

I almost fell over hearing her say those words. Fell over at the fruit and vegetable stand we were chatting in. I told her that of course she loves her son that she did do residential but it didn’t work out, it wasn’t the right time. And I mean every word I said, I’m not one to patronize.

We chatted more about our sons, I gave a quick summary of Thomas’ behavior that ultimately led to us having to chose residential. Janice completely understood and said her son isn’t as aggressive but some days are very difficult. I understood her.

These days Janice has created a program for her son and similar functioning young adults. There’s socialization and activities, I was so impressed with what she has created and now has up and running. It’s amazing really.

It really shows how God works. If her son had stayed in residential, I wonder if would she had been as driven to create this program ? It’s also amazing that I ran into her now, not when I would have burst into tears trying to explain things. Today I was able to hold a normal conversation which is what one is supposed to do. It was nice to talk to another mom of a special needs child.

It was very nice to hear someone “in the know” say that I love my son so much but I don’t think I love my son anymore than she loves hers.

The Big City

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I never thought I would enjoy going to Manhattan as much as I do.  I’m sure that was part of God’s plan as well, to get me in a different atmosphere to deal with what was going on.  I know most people will say I only enjoy it so much because I don’t do that commute everyday and I’d agree.  I really like the ferry and believe it or not the subway too.  Most people aren’t looking to chat and nobody bats an eye if you read, write, close your eyes, whatever…on the ferry or subway. If someone is chatty I’m usually more than happy to chat as well. People are interesting, I’ve met an English couple who came over on the QE2, I met a young woman from Mexico who was in NY visiting her boyfriend, she traveled alone and I was so surprised! I met a couple from Canada, Toronto I think. They drove here in their motor home. The husband had a therapy dog but I didn’t ask why.

I also tourist/people watch. It’s funny because I’d say 8 out of 10 times you can tell who is not from here. It’s hard to explain and put your finger on it but I know most native New Yorkers will agree. I find it so funny when I lose my bearings in the City and I’m looking around for a landmark, the first thing I think is, “Oh my gosh I look like a tourist”. And I laugh at myself. It’s not a bad thing it’s just funny because no one wants to look out of place.

I enjoy the solitude when I go by myself. Yes, in one of the biggest cities in the world with all those freaking people I enjoy the solitude. Almost everyone has someplace to be and they need to get there, so just walk with your head up and watch where you’re going.

Some people will drive into the city from the outer boroughs. I used to do that years ago when I first started taking Thomas to see Dr.F. After a while I grew tired of paying the high tolls and high parking fees and started taking public transportation with him. When he was doing well we used to have fun going together. I taught him to “hold on” if we had to stand on a crowded subway and we would take pictures of ourselves with my cell phone. After his appointment I would love to walk over to the Anthropologie store a few blocks away. Thomas was great and loved it when I bought something. He is the best in enabling a shopper 😉

Now that I’m learning about the locations of new to me thrift stores I enjoy the city even more. I get a kick out of becoming a regular in the thrift and the staff says hello. I don’t think I could live in Manhattan though, I like where I live and I like being a New Yorker. I consider my trips to Manhattan a mini getaway after my appointment.

God and therapy

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I told my therapist today that I believe she was placed in my life on purpose by God so many years ago (she helped us with Thomas and how to navigate the board of Ed for the first residential school).  I was surprised that she didn’t bat an eye at my statement.  I don’t know her religious background or beliefs, but I do feel comfortable saying what I believe is true as a Christian.

When I was first searching for a therapist I was convinced I had to find a Christian therapist. I was afraid of my faith being mocked or if the therapist had different beliefs or was an atheist they would argue with me. I know now that I was being unreasonable but back in the day that’s how I felt. When I did see a counselor from church all we pretty much did was talk about helpful bible verses and my son’s behavior. In hindsight it was not what I needed at all and if not for my husband telling me this wasn’t working I don’t know where I’d be.

This is not to say all counselors who work at or volunteer at a church or place of worship aren’t any good, I was just much more depressed than originally thought and I needed stronger interventions.

It took Nancy and Dr. L and medication to get me well and I know they are both working under The Lord’s guidance. He is the great physician and I’m so thankful His light is shining to defeat the darkness of depression. I did an exercise with Nancy today where I had to visualize the depression as an object and what will beat it. I pictured the Light of God coming in and destroying the dark object of depression. I ended the exercise visualizing the Light shining continually on the hiding place of the depression.

Nancy asked what I visualized and I told her about the light of God shining down. I didn’t know how she would react but she smiled and approved. That really meant so much to me.

God’s light and wounds.

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I’ve been feeling down the past few days.  It’s not major but not minor either. But on the upside, Daniella and I had an interesting conversation last night.  She asked me what do Nancy and I talk about, but…I don’t have to tell her if I don’t want to.  I thought that was very sweet and insightful for a 12 year old.  I explained that we talk about almost everything and yes sometimes we talk about her and her siblings, but not always.  That Nancy listens and may explain why I might feel a certain way or pick up on things that I don’t feel are important.  I have a caring daughter.  I’m glad she feels comfortable enough to ask me such questions and in a mature manner.  

I’ve been praying in hope that a The Lord will relieve this down-ness. One of my wonderful choir friends said something to me last Thursday that is sticking with me still.  She said that God uses your weaknesses and wounds through which His Light spills out of you.  You are then able to bless others when you expose the humble, hurting parts of yourself.  I found this really profound.  This blog is/has been an outlet and source of healing for me. I’ve received such feedback to keep writing, something I never expected, I had no idea anyone would even read what I write.

I can only hope God’s Light spills out of the parts of me that are wounded and that that light is shining and touching someone else.

I really heart my choir family. My friend received her words from a book “Dear Jesus” by Sarah Young.

The Mall

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I was in the mall with our youngest, Samantha and I noticed a young man holding the arm of another young man. I looked again and noticed it was an outing of special needs young adults. Sometimes seeing this makes me sad. Not because the people are special needs, but because my special needs young adult goes on these outings without me.

Before everything fell apart when we changed medications (due to low white blood cell counts caused by one med), I had a picture and plan of what our lives would be like. It all seemed to be fitting into place. Thomas was in a great school, we both adored the staff, he was a part of great recreation programs and Thomas was on the waiting list for group homes once a space became available after he turned 18.

Don’t get me wrong I’m incredibly grateful for the school Thomas attends now and I know we couldn’t continue to live the way we did any longer. I know all this logically. However logic and emotion usually don’t reside together, not in my mind anyway. It’s not all the time that I get sad, just here and there. I guess I feel sorry for myself and that sounds terrible, to me anyway. I don’t like pity parties. When I see these young adults I remember “the plan” and how it’s no longer viable. Then I remember that I was never in charge anyway. God is and He has his own plan. One I am not necessarily privy to. I have to trust in Him.

As much as I mourn the change of my plan, I do enjoy the quiet environment of my home these days. It’s not always “quiet”, there are 3 girls living here, one a teen and one a pre-teen. But it’s not chaotic either. And I’m not emotionally exhausted trying to keep everyone peaceful and myself safe. It’s kind of a sucky trade off to see my son turn into someone I would fear, but God will use this for his glory. I know he will.

There are some things I miss so much about when Thomas was stable on that particular medication. I will never forget one time, about 3 years ago, right before we had to stop the one medication. Thomas and I were in Manhattan to see his psychiatrist. Saks Fifth Avenue was a few blocks from the doctor’s office and my husband had just informed me I could purchase my dream handbag. There was a boutique in Saks. Thomas and I get there and he helped me pick out some bags to try on. The whole time asking me, “You gonna buy it Mom?”. Meanwhile I was overwhelmed and hyperventilating as I never in a million years saw myself buying this designer handbag. I went outside to call my husband and ask him if I could but it there at Saks without him present. It took a while to get him on the cell phone so Thomas and I walked to a find a pretzel vendor. Just as we found a pretzel guy, Tommy called back and said to get the bag, to open a Saks account as I didn’t have our major credit card with me. I told Thomas I was getting the bag and he practically ran back to Saks! I had to keep up with him, lol! Thomas was walking so fast saying “Excuse me, my Mom’s getting that bag!”. We arrive back at Saks and the salesman was so great to Thomas. He didn’t patronize him. Thomas pointed to the bag and confidently said, “That one, my mom’s buying it!”. Unfortunately I was unable to open a Saks account as I didn’t have my major credit card with me. Arrgghhhh!!!! I tried to explain that if I had the credit card I wouldn’t need to open the Saks account. They wouldn’t budge so I had to explain to Thomas that I didn’t have the right card but I will get the bag another time. I’m not sure who was more disappointed him or me.

About 2 weeks later I made my way to The Mall at Short Hills in NJ. Tommy couldn’t come as Samantha was sick. You know Thomas came with me, I had to have him come along to purchase “The Bag”. The whole experience wouldn’t have been the same without him