special needs

The Live Tree

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We searched for, picked out, purchased lights for, brought home and put up our first live tree yesterday.  I’m more than happy to spend my "black Friday" that way.  Aside from making sure the tree was secure in the stand our day was pretty uneventful and I’m not complaining.

Reading that "we searched for" our tree makes me smile because we went to the parking lot of two major stores and a man had rented the far end of the lot to sell Christmas trees. We live in a fairly urban area and we would have to drive at least 45 minutes away to actually "search" for the perfect tree. I'm perfectly content with how we selected our tree even though in my opinion it's unlike a Christmas story book.

Thomas was thrilled picking out our tree. And I think it’s funny how God makes you slow down and notice the little things or you will miss them. As we walked towards our car with the tree I heard Thomas say, “Have a nice weekend” to the tree salesman. This is a pretty large step for Thomas in interacting and being social. I’m glad I didn’t miss it.

So our first live tree is up and lit. I have to say its gorgeous and much prettier than our pre-lit artificial tree. I don’t remember the type of tree it is but I don’t think it matters. Oh and it smells nice 🙂

Coming Home and The Tree.

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Thomas will be coming home for Thanksgiving.  I’m looking forward to him being here.  Our last visit was cut short by his behavior so hopefully we won’t have a repeat of that.  For forever now we put our Christmas Tree up the day after Thanksgiving.  It’s now become Thomas’ “thing” to do with me.   The girls help out don’t get me wrong, but it’s definitely my son who call this shots about the tree and the skirt and the ornaments and the star on top and the stockings…  The older girls get into hanging up “their” ornaments like the ones I have from when they were babies or made at school.   I love those.  Oh and the girls like setting up the Nativity.     

I’d like to get a live tree this year. I’ve always been against it, paranoid of the tree drying out and being set on fire by the lights. Yes that’s how my mind works. Tommy and I discussed it and we will go tree shopping the day after Thanksgiving with Thomas. How could we go without him?

I’m getting ahead of myself though, I’m talking about Christmas trees and the day after Thanksgiving but not Thanksgiving. We are hosting at our house. It will be really nice as my Mom and I split the cooking and it works out great as nobody gets overwhelmed. Hmmmm I guess I don’t have much to say about Thanksgiving except I am thankful for my family, my church family, my friends, that I am free to worship and that I get to worship the one true God.

Maybe that’s why I’m so eager to skip over to Christmas. The songs about Jesus birth. I love them. Especially the ones that command, “Come and worship!” Of course I like the regular winter themed songs and Rudolph but the reason is Christ’s birth and we should sing about His birth and worship him.

I’m looking forward to this week. My son being home, Thanksgiving and then…The tree. The tree that Thomas can’t wait for every year.

Moving forward

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“Moving Forward”. 2 words and not a difficult statement to follow given you have the means to do so.  At this time in my life it is time for me to move forward.  I’m quite serious about my business (www.nayaudo.com), I want to see this succeed.  I feel this is what I’m supposed to be doing; shopping.  Feel free to laugh it’s ok.  Yes I dream of getting paid to shop for other people or find them some treasure they haven’t been able to locate on their own.  That treasure can be almost anything, but I specialize in clothing, shoes and the thrift.

Moving forward. Why isn’t it as easy as it sounds? I believe I’m not going anywhere until The Lord decides it’s the best time according to his plan. If my business took off last year I would have buckled, I was not ready and was still healing. But just because I think I’m in a better place doesn’t mean God agrees. Giving it all over to Him is one of the most difficult things I’ve done. To The Lord I handed over Thomas’ residential school and now I hand over my future of trying to be a success outside the home. I know He is “in charge” and He really does know better than we do. I trust The Lord, he is faithful.

I’m looking forward to moving forward. To not visit the depressed and traumatic times anymore. They’re still there, just not ruling me like they did. I’m also looking forward to growing as a person and sharing that growth with my family. Frustration and having more patience are two things I really need to work on. I want things to happen NOW like most of us do. If I’m to trust The Lord, I must develop more patience and accept his timing and not get frustrated.

I’ve done quite a bit of reflecting of when I was going through the depression and when you’re in that state you don’t realize how far down you are. I was thinking about this, this morning. I don’t ever want to be that far down again. When I was remembering that place I was reminded of the physical sensation of being that far down. It was as if I were in a ditch looking up at everyone and I couldn’t get myself out. I don’t ever want to be there again.

So here’s to moving forward!

The hurt.

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When I spoke to my son on the phone the other day I didn’t mention that I felt sad afterwards.  Sad that this is his life away from us.  Before we had to take him off the one med that produced stability I had things pretty wrapped up for Thomas.  He was in a great school, awesome recreation programs and on the waiting list for group home placement for when he turned 21.  Thomas was also pleasant to be around.  High maintenance yes but not aggressive and well liked at school and his other programs.  It’s only recently have I realized that my way is not the way things were to go.  As my husband likes to say, “We’re not in charge”.  He’s right.

When I think back to actually admitting Thomas to residential; as his mother I literally gave them my son.  I couldn’t live like that anymore and neither could he. I was still spiraling from depression and everything just felt so hopeless. I realize now that our situation was not hopeless. I did love my son enough to want him to get help even if that meant handing him to other people and admitting I couldn’t do it.

I think what hurt the other day was the cold water reality that “my way” that I worked so hard for wasn’t ever going to happen. It really bothered me and it took a therapy session to unearth that in me. I’ve had time to digest that fact and I’m ok with it. What matters most is that Thomas receives all the supports and help he needs. He also needs his mother. I need to remember that, he’ll always need me here and there just like the girls. Heck I still need my mother.

I wish I had something deep and philosophical to write about the love and courage it took to allow other people to help shape my son’s future. I don’t. I can only say that it stings even hurts sometimes but it will be totally worth it to watch him grow.

IEP meeting

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I spoke to my son tonight.  He called from school.  It was sweet listening to him, mostly because he wants to talk to me. And that means a lot considering all I’ve been through with him. My girls tell me about their day and friends, funny things that happen and I love it. I love that they talk to me but when it’s Thomas…he’s so deliberate in what he wants to say you feel like you don’t want to miss anything. And that he wants to talk to you and tell you about his day or upcoming events, well it’s special.

I had Thomas’ IEP meeting today (Individualized Education Plan) which is goals and therapies his school must work on and provide. This meeting was with the district. It was the most uneventful meeting ever! I already spoke with Thomas’ school last week via teleconference about building on previous goals and new goals for Thomas so the IEP meeting was a but redundant. I was happy it was redundant though. I’ve had way too many IEP meetings with me yelling and crying through the meeting because I didn’t feel heard. In those days I was fighting for my son and at this moment in time I don’t have to fight. I watched a woman younger than me walk in anger down the hall with mention of her attorney. I’ve been there, done that, have the t shirt. Part of me wanted to tell her everything will be ok, but I don’t know that at all. I don’t know her situation but I know exactly how she feels and it’s not a good feeling.

When I sat down with the district representative and a district psychologist I recognized the rep from many IEP meetings of years past. I know I’d been unpleasant to this woman during those meetings. Those meetings were full of tension and uncertainty and mistrust. At one point she asked if I remembered her and I smiled and said yes. She asked if my hair used to be blonde, I laughed and said yes. We chatted quite a bit about my son’s school, how happy we are with his placement and how happy we were with the previous school. I’ve never had such a district IEP meeting, ever! When we were done I thanked them and said it was so nice to have a meeting where I was “relaxed”. I look forward to future meetings of this manner. Praise God!

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.

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.

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.