special needs

Diagnosis’

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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”.

Guardianship

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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

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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. 

 

People watching and a visit.

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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.

He makes all things work together for our good

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I went to church yesterday as usual but I *almost* didn’t go.  Then when I saw parking was very tight due to all the snow around here, then I figured I wouldn’t go if I couldn’t find a parking space.  The perfect parking space opened up, no kidding.  God was working and so was the enemy.  I believe the enemy works to find ways to keep us from God, like keeping me wrapped up on the computer right before it was time to leave for church and making the parking situation look so much worse than it was.  I won’t say anymore about him. I love how The Lord made way for me to able to worship Him when I had such doubtful thoughts.

When I arrived at church I realized how much I missed being there from the week before.  Then I remembered we (the choir) sang last week.  I cried through some of the worship songs, the words are so powerful and really make you think.  “You make all things work together for my good”, is one lyric that almost made me sit down and made me cry.  Those are such powerful words to believe and I do believe it absolutely.  But when I think of the seasons of pain, Thomas being aggressive to me and then depression I get sad and teary knowing that those are some “things” God has worked together for my good.  How and why I have no idea but I trust Him.

I was on the ferry last week writing in a journal how God plans our every move, our everything for His glory. It’s a wonderful thing to think about. How He orchestrates all of our moves in life even the “small” ones for our good and His glory. Yesterday our Pastor said, “Nothing brings hope like the name of Jesus.” Oh my goodness the truth in that statement is overwhelming. How we pray and want to be like Jesus, to want to follow Him and love Him. And He loves us and His name is what we cling to for hope. Even writing this gets me teary (I’m a bit emotional lately, bear with me) That statement struck such a nerve with me, but in a good way. I think our nerves need to be struck every now and then. Jesus is the name we call out to for hope when we’re in pain. I remember one instance years ago when Thomas was aggressive with me, I literally yelled out, “Jesus!” but not in vain I called out for help. Help for Thomas to stop. When Thomas heard me yell out it stunned him and he stopped for a moment, enough time for me to get my bearings. I needed hope so bad that day and who’s name did I call out? Jesus. He gave me hope he really did. He sent the most caring ambulance workers and police officers to my house that day after I called 911.

I don’t mean to skip down memory lane to painful memories but I can’t help it when I think of The Lord working everything together for my good, because He is in charge and His way will always be better than mine in the long run. One of the most difficult lessons I’ve learned these past couple of years is to *really* trust Him. To honestly and truly put my life in his hands. To know with all my heart that if He hasn’t already planned it, it’s not going to be. So tough to put into practice but so necessary to know.

Up early

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I’m up before everyone.  I do this fairly often and it’s really nice.  I’m up before the craziness of everyone getting ready for school.  That includes me getting decent hair and face going on.  I take Samantha to school but I’m not one to go in my pajamas.  Except for the barking of my dogs (for whatever reason early mornings are cat chasing time.  Go figure.) it’s really quiet.  Like hear a pin drop quiet.  So cool.  This used to be the quiet I would get at night when everyone was small.  They were all pretty much were in bed by 9pm the latest.  These days …nope.  Everyone seems to be up forever and want to talk.  Meanwhile by 9:30 ish I’m all talked out and I’m ready for the quiet. 

I pick up Thomas tomorrow for a weekend visit.  He’s so looking forward to coming home.  Every phone call these past 2 weeks has included confirmation of the date I’m coming to get him, Feb. 1st and that yes, I promise I’m coming.  Oh and that I spoke to the social worker about said date.  He’s funny but I don’t blame him I’m sure I’d be the same way in his shoes.  I’m impressed with how Thomas speaks to me sometimes.  He actually said, “Mom, you *promise* you’re coming?”  Who knew that he knows the concept of a “promise”?  Not me until he said it. 

I’m off to the city today (another reason I’m up earlier). Earlier this week I was reflecting on how things have changed since I started seeing Nancy.  When I first went to her I was terribly clinically depressed.  I hadn’t started meds yet, actually I was terrified of meds and said I would NOT take them.  That adamant position changed rapidly when I realized that no amount of therapy was going to help that this was more serious than I thought, plus I became more afraid of the depression than the medications.  When I first started seeing Nancy,  I cried through every session and after we were done I’d walk down Broadway on the upper west side for blocks and blocks, many times fighting back tears.  One time and I know this was The Lord’s work, my wonderful friend Jackie called me as I was walking.  I couldn’t believe her timing. I walked and talked and cried down Broadway on the cell phone with her for about who knows how many blocks.  Probably 10.  Until I saw a subway station for my train and decided I was tired of walking. Amazing how I thought I was all along when I wasn’t. I had the Lord with me and then He prompted Jackie to call. I love those perfect timings.

Ok, it’s getting later and I must start the chaos we call mornings. I’m extremely thankful the only one I have to “help” a little is Samantha. She really needs prompting and that’s ok. I’m off!

Life

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I remember before I became a mother, before I had kids.  I was good with kids.  I used to teach gymnastics to children of all ages, like 4 yrs to 14yrs ish.  And the kids liked me.  I knew it all too haha!  Like everyone else did before you have that first child that totally rocks your world in ways you could never imagine.  Before I had kids I had all these things my kids were never going to do, see on television, or eat, I think I even continued that ridiculous image up until Thomas was a year old.  Silly. 

To say Thomas rocked my world is an understatement.  I mean we went through the whole newborn adjustment period all new parents go through.  Then at 6 months we had the CT scans, skull x rays, the helmet, Physical therapy, etc…  I seriously wouldn’t wish it on anyone.  But we got through it.  I never would have even for a millisecond thought that would be my life with *my* child.  Never.  I , like many other Mom’s was supposed to have this totally typical child who was all sorts of wonderful and did all sorts of typical things.  I’m sure other Mom’s of special needs feel the same way.  Don’t get me wrong,  I’m not bitter woman, Thomas is who he is and I love him all the same, I just NEVER thought our lives would turn out the way they did.   Sometimes I wonder how we got through it.  Neither one of us were particularly “religious” in the early years, I know I did pray but I didn’t have the relationship with The Lord I have now. 

I remember the person I was before I had Thomas.  I knew it all man, yes I did.  I’m thinking I wasn’t alone in that attitude.  Honestly I wouldn’t have liked to continue on that path, that road of knowing it all.  Thomas broke me down and made me who I am today.  Or should I say The Lord broke me down using my son as an example to me to be different, to grow a different way.  Yes, I think that is a more correct statement. When I suffered from depression there is a part of me that believes The Lord broke me down there as well, that I was maybe getting too cocky, or comfortable perhaps redirection was needed. I don’t know it just feels that way. I’ve learned a lot from the depression, things that would probably have gone un-noticed by me if the road didn’t turn the way it did. I’m NOT saying it was this magical, mystical, exploring time, not at all. It’s just the way I feel and believe.

I know I’m not alone in sitting there wondering where that original vision of life went. I’m sure many lives are complete 360 degrees from where one started. It’s really amazing isn’t it?

Thinking about things

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raj

I was thinking about a few things today.  First is our rescue dog named Riley.  We didn’t name her she came with the name and since she was 2yrs old when she adopted us last June we decided not to change her name.  Although for some reason when Thomas said “Riley” for the first time it came out “Rogerey”, so that is officially her nick name or “Roj”, oddly enough she will answer to it.  I know I say this all the time that the Lord leads us; but He truly did with Riley.  She’s the perfect blend of sweet, affectionate “wouldn’t hurt a fly” plus neurotic enough to fit in our family.  She needs a lot of attention which is ok with just about all of us because we love her.  I can’t imagine our life without this dog.  She filled a void and the Lord led her to us.

I was also thinking about prayer.  I really believe in prayer and that God hears us.  When I walk Riley after dropping Samantha off at school, it’s not uncommon for me to walk/pray/walk/pray.  I enjoy it.  I enjoy the solice, knowing Riley isn’t going to talk and interrupt me although there have been plenty of times I’m deep in prayer and not paying attention to Riley and she’ll make a sudden stop.  I’m sure it looks hilarious.  Sometimes it feels that way too.  Lately when I pray I’ve been praising more than anything else. I’ll pray on the ferry and subway and praise Him then as well.

I was also thinking about my therapist. Lately we’ve been talking about “things” and I leave feeling enlightened a lot of times. I never thought someone would be able to organize my thoughts and feelings the way she does. I realize she’s on the outside looking in but I’m impressed. I’m incredibly grateful to God for putting her in my life as well as my doctor who listens to me, actually listens. Some doctors have a “my way or the highway” approach and that can really stink. I’ve been blessed to have a physician who hears what I have to say and make necessary changes if I’m not happy. Again, this physician was put in my life by The Lord.

My husband entered my thoughts today too, as usual. I mean I think about him every day, but today I was just thinking about how he loves me and I love him. Quite simple really.

Praise Him.

Phone calls

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Our son, Thomas has been calling us lately from school.  I don’t think we called him once, but he’s called us just about every evening with the exception of 2 evenings I believe.  And last night get this, he only wanted to talk to me.  It was really sweet.  Not a deep conversation mind you but he wanted *me*.  This is a big deal, for me at least because when he’s home and starts to get comfortable, Thomas starts sliding backwards towards behavior that landed him in the residential school to begin with.  So to have him say, “No Mom, I want to talk to you”  when I asked him if he wanted to talk to his father, is really sweet and just reinforces that he does love me.  Yes I know he always loves me but it’s difficult to logically tell yourself this when this sweet boy is giving me dirty looks for no reason.

When Thomas returned to school after Christmas, I was ready to have him go back but felt so guilty about feeling that way. Fast forward 2 days and Thomas calls us from school sounding so good, so comfortable, so at home…it was amazing. That really took the sting out of him going back and took some of the guilt away. After talking to Thomas last night it made me want to visit him even more. Tommy and I were discussing the best day/time earlier. But I have to bring the boy socks. He kills me. Thomas insisted he only has one pair (I find this hard to believe) and that we have to bring him socks when we visit. I called the social worker and she promised to look into the sock issue. Regardless, we’ll still bring him socks, why not?

Getting down to business

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I’m in the middle if writing my business plan for my store I dream of opening one day. Yes I dream of opening a high end resale store in my neighborhood (I love my ‘hood). I had the opportunity to take an entrepreneur- ship class last year at the local city college and it was all about learning how to write a business plan. Since last spring I have been procrastinating writing my own plan. Now that I want to someday make this dream a reality I need the business plan.

I feel like I’ve given myself a huge homework assignment. I’m not complaining since this is self imposed but I’m overwhelmed a bit. I think this is the direction The Lord wants me to go. You know when things fall in that direction. I’m not saying I have this clear cut path and message, no not at all. No matter what other things I think of doing as a “grown up” this is one thing I can’t get out of my mind and I keep coming back to it. I have this thrill of the thrift that I keep talking about.

If I’m wrong and it’s not meant to be The Lord will show me and point me in a different direction.

So getting back to this business plan…I know I’m procrastinating by writing here. I haven’t drawn a blank like the one I have for certain parts of this plan in a long time. Usually I start writing and things take off. It’s forcing me to dig deep and use this brain God has given me. I know I can do this. It’s not even like I have little children around anymore to distract me. Even as I’m writing this I’m uninterrupted so I think I’ll take this as my cue to stop procrastinating and get to work. I won’t ask for a wish of luck but a small prayer couldn’t hurt :). Thanks.