parenting special needs

Things you don’t realize

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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. 

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.

There’s nothing like a big dog.

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riley

Seriously.  And I can say this because I also have a small dog~a toy poodle aptly named Spike.  Our big dog is named Riley, she’s a rescue dog and we  love her so much.  Of course we love our Spike, he’s been here almost 12 years.  When Daniella was a year old, Alyssa  3yrs  and Thomas 5yrs I decided we needed a dog; a small dog though.  I thought I wanted a Yorkie but the ones we say were either sickly looking or hyper beyond belief.  Then…I met Spike.  Oh my goodness he was just the cutest little thing all fluffy and apricot colored fur.  Draw dropping cute no kidding.  And he wasn’t crazy hyper just normal puppy playful.  Spike also trained super easy which I couldn’t believe, almost everything about him was easy. And he never ever nipped at the kids even with them being so young and active.  Spike really is a great dog.

So 11 years later Tommy and I start talking about getting a big dog.  Just “talking”.  You know because Spike, and 3 cats aren’t enough pets…  We talked for a couple of months trying to decide which kind of big dog.  No puppies we had decided.  I had a German Shepherd growing up (the best dog in the world evah but that’s another story), but we were nervous about getting a well behaved one.  Pitbull?  Yes definitely in the running but again we were wary about being able to handle him/her.  Especially since we’d be taking in an adult dog. 

One afternoon I go to Petsmart with Daniella and Samantha to get food for Spike.  There was a rescue group in the back of the store with dogs and cats for adoption.  We saw an adorable Yorkie mix but I knew we already wanted a big dog.  Then we see her.  Riley.  This big golden retriever/golden lab mix missing half of one ear.  Only you didn’t know her ear was missing until you got up close and pet her.  Riley let us pet her, she laid down on the floor of the store so we could keep on petting her.  Meanwhile the rescue foster “mom” was there to answer all our questions.  Jackie was great and just the sweetest.

I text Tommy that we’re at Petsmart and petting a rescue dog.  He texts back, “ok”.  I text: ” I’m filling out an application for her, she’s just the sweetest” and send a picture.  Tommy is like, “…ok…”  Meanwhile I’m  a little nervous.  What am I doing?

Jackie brings Riley to the house for a home visit and Spike and Riley get along so well, it’s unreal.  The cats are wary but what can you expect. We’re ready to tell Jackie to just leave Riley here we don’t want her to go but Jackie isn’t able to because Riley still needs to be micro-chipped. We agree to meet at Petsmart in a couple of days and we’ll take her home from there.

So almost a year later Riley is a part of our family as if she’s been here forever. She is the sweetest dog I’ve ever met. Yes I’m biased but I don’t care ;). When the depression would rear it’s ugly head, Riley was here when everyone else was at work or school. And I would think how she is rescuing me like everyone always says. When Thomas met her and hugged her, Riley just sat there with this adorable look on her face. Spike isn’t the same, he loves us but Riley is unreal in her caring for us. Tommy and I both say we’ve never seen such an affectionate well mannered dog.

I’m so glad I stopped in Petsmart that day.

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.

Don’t Say it Out Loud

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I’m talking about common treatments for depression.  Medications and therapy, that’s I’m familiar with anyway.  When I first started seeing Nancy for my depression I was dead set against medication.  No way, no how, I’ve thought about it…NO.  I was terrified as I’ve written in previous posts. If I started medication I thought I was weak or *really* so sick I that couldn’t wrap it around my brain; I was that messed up and that I needed that much help.

I’ve written about how I did decided to see Dr. L and I did agree to try a mild anti-anxiety med first and then realized that it wasn’t enough. I agreed to anti depressant medication and thus began the trial and error “rollercoaster” that isn’t fun but sometimes necessary to get the correct me or correct combo of meds.

Not until recently did I really appreciate the severity of what happened to me almost 2 years ago when I “went to bed”. I had a severe clinical depressive episode. Nothing like that had ever happened to me before, even when I had the miscarriages. After months of Thomas’ behavior not to mention years of pushing things aside or just trudging through it all, I couldn’t do it anymore. I used to get annoyed at people who say, “I don’t know how you do it” referring to my son and my girls when Thomas was not doing well. You “JUST DO IT” as the Nike commercial says. You seriously just do. You put your head down and go forward.

When Thomas became aggressive to me after years of him being so stable that he wouldn’t even think of hitting me, I broke down. I remember thinking I couldn’t go through this again. I guess once around is my limit. That trauma was so intense I still struggle to describe it and talk about it.

But getting back to taking medication. This past year when talking I found I still lowered my voice if I decided to tell someone, “I take antidepressants” Why do we still do this? Lately I consciously keep my voice even, I mean I don’t need to yell it or shout out loud but I don’t want to lower my voice as if I’m ashamed or I’m afraid other people will hear. I’ll tell anyone I’m in therapy. In fact I think everyone should have the opportunity to go into therapy. What happened to me changed the chemistry in my brain. That is not my fault and nor is it the fault of anyone else suffering from depression. Like the miscarriages I felt betrayed by my body. Why couldn’t I just carry on and trudge on through like I did in the past? Why did I now have to deal with “this”?? I felt broken. And then feel embarrassed that I was taking medications? Today I’m not embarrassed that I take meds, it’s necessary at this point in my life much like insulin is necessary to a diabetic or blood pressure medication to a person with hypertension. I know everyone always says that so much it seems like lip service but it’s so true why not say it again.

Lets not whisper it anymore I promise I won’t stare if you won’t.

Back to our regular program

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The holidays are officially “over” by my clock and calendar anyway.  I’m glad, whew!  Now upward and onward to getting back to life in general.  It was pretty cool having the kids home for break, I enjoyed sleeping in :).  The girls are getting older that they no longer need me to be “rightthere” all the time.  Thank God.  Seriously.  Samantha at age 7 is fairly low maintenance and if Alyssa is home I can run an errand or two alone by leaving Alyssa to watch Samantha.  I want my life back where kids are in school, choir practice is resumed and all is right with the world.  Oh and I go to Manhattan to see Nancy and after we chat I get to thrift in the big city.  Yes I am excited about that.  I haven’t seen Nancy in about 2 weeks or so and I miss her.  I’m not sure if that is “correct” but I do like her as a person as well as a therapist, although I’m not sure you could NOT like a therapist as a person and still want to have sessions with them.

So yes I’m off to Manhattan and hoping and praying the snow storm predicted won’t begin until I’m back home.  I’m not a fan of driving in the snow, I don’t know many people who are.  I miss going to the city.  I’ve come to the realization that I am having a love affair with NYC, Manhattan in particular.  Living on an outer borough it’s easy to get to Manhattan and I notice my Alyssa will take any opportunity she has to go as well.  I’m glad because I want her to feel comfortable navigating subways and bus lines.  I love to people watch so this is perfect for me.  I know I enjoy the city so much because I’m not dragging myself there and commuting to a job everyday.  However I will say (now) that I’d jump at the chance to work in Manhattan when Samantha is older and much more independent.  If it’s The Lord’s way though.  It won’t happen unless He wants it to and I’m not privy to His plan.

When I do visit the city I enjoy taking public transportation.  For a people watcher, it’s definitely the way to go!  I’ve driven many times and it’s usually a headache and an expensive one at that taking into consideration bridge/tunnel tolls not to mention parking.  Ugh!  Yeah, that’s all I have to say about that.

Yes I’m welcoming back our regularly scheduled program and routine. We had a lovely Christmas, Thomas came home and the visit went for the most part, well. We spent New Year’s Eve with some of the nicest, sweetest people on the planet. Some new friends and some friends we’ve known for years and years. Regardless of how long everyone knew each other, all seemed to find common ground and chat and laugh. I loved hearing people laugh.

I hope everyone has a smooth transition back to their regular schedule/program.