parenting

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.  

Wandering

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My thoughts that is, they’re wandering as most of us would probably admit to.  I wander mostly to what life would be like if I worked a full time job outside the house.  Would things be that hectic?  Would it alleviate my boredom?  Hard to say and/or predict.  Don’t get me wrong I’m thankful my husband has been able to provide for us that I have been able to stay home but dang man, this staying at home mom thing seems to get more difficult as the kids get older.  In my personal experience, I find that I’m taken for granted.  My girls *know* when I’m home and that they can call to come home from school (this past time my daughter was NOT all that ill that she had to come home, I only discovered this only after I picked her up).  Another daughter asked to be picked up because she was not feeling well but well enough to attend some classes but not well enough to take the bus home~again information I discovered after I did the driving and  picking up of said daughter. 

I know my husband appreciates me as I appreciate him.  I don’t want either one of us to take each other for granted and so far we’ve been “ok” in that category.  My kids on the other hand…after last weeks picking up – a- pa-looza.  I made the decision that just because I am “home” doesn’t mean I have to pick everyone up just because they want me to.  I think when you stay at home long enough you start to feel “well that’s what I’m here for”, but honestly no it’s not.  I’m here at this time in everyone’s life to ensure the house runs smoothly, not to pick up kids that aren’t even sick (like really sick you all know what I mean). 

So as a result of being taken for granted my thoughts wander. Wander about working full time, part time, any time that wouldn’t take away from when I have to be here. Not an easy schedule to work around but those are my requirements. I won’t make excuses for why I’m still home. Things with Thomas kept me here at this station longer than I thought I would be.

So now my thoughts wander and I wonder what’s next?

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. 

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.

A New Normal

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After admitting Thomas to Andrus things were not the same at home as one could well imagine.  I know I missed him.  I didn’t miss his behavior but I missed him. I missed Thomas being in my house, I missed my son. I know Tommy was going through his own grieving and missing Thomas. I don’t remember us talking much about how we felt at least not to each other, it was too hard. We knew why the other was in a “mood” or quiet or grumpy. We tried so hard not to take it out on each other and give the other space until we were able to talk this out. We knew all we had was each other, I was the only one in his world who knew how he felt and he was the only person in my world who knew how I felt. That’s not to say we didn’t get snippy here and there, please…no one is perfect.

The girls settled in to the new quiet house rather seamlessly. Funny how we went from constant state of chaos and not knowing when the next outburst would come to this dare I say, “typical” and predictable household. Yes the girls fought and bickered but it was so textbook, they were doing what they were supposed to do, not witnessing their brother be out of control.

I remember feeling like a fraud when I went out with Alyssa and Daniella. Like I was incomplete or missing something because Thomas wasn’t with us. Don’t get me wrong outings such as going to the zoo, shopping, even a trip to the corner store were now a heck of a lot easier. It felt odd though, like I was playing “pretend” in a life I was presenting to the public that was not the truth. I had 3 children not 2! So many times I wanted to yell, I also have a son! When people would see the girls and I out together and smile. I felt like a liar.

Andrus had rules for visits. I can’t remember exactely but I think it was no home visits for a month or so to encourage Thomas to acclimate to Andrus. I think my son is amazing and truely gifted by God in resilience. He allowed us to leave when he was admitted to Andrus. Plenty of tears mind you but he didn’t physically cling to us or scream or make it harder than it had to be on him or us. He also acclimated to Andrus in a remarkable way, he stepped right into the routine and loved wearing a uniform to school (Andrus is a private school that accepts payment from the NYC Bd. of Ed.). I was and still am in awe of this amazing gift my son possesses. I remember Thomas’ social worker, John and I discussing this. He too was impressed with Thomas’ ability to adapt.

John was a wonderful social worked, very open and honest. He was was a few years younger than Tommy and I, married with children. Somebody we could definitely relate to and he appreciated my blunt honesty. He was also a person with a positive attitude which to us was a breath of fresh air after all the hospitalizations and different doctors and frustrations we faced the whole year prior. I didn’t recognize before writing this that John was placed in our life by God. There’s no way our pairing was a coincidence or by chance. It was orchestrated and intentional by Him.

Honestly I am amazed and humbled at how The Lord was with us even though I didn’t ask Him to be. The Father’s love doesn’t have to be asked for, it just is.