parenting special needs.

Discouraged and disconnected.

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I haven’t blogged in a while mainly because I haven’t had much to say.  I’ve been discouraged and disconnected.  Discouraged because my job hunting (along with many others) has been fruitless.  Disconnected and not feeling a part of my life, like it’s just going on without me.

Today I’m relieved to admit I no longer feel discouraged or disconnected.  No, I haven’t found a job but it’s ok.  I’ve stopped measuring my worth as “less than” because I’m still at home.  I’m where God wants me to be right now and no amount of temper tantrums will change that unless it’s what He wants.  I’m still actively job searching but no longer discouraged. When the right job comes along and I know it will, everything will fall into place. It’s just taking a lot longer than I had hoped. But it’s not my plan anyway.

As for feeling disconnected, I didn’t even realize I was disconnected until Tommy pointed it out to me.  I thought I was “ok” not realizing I am missing out on my little world. I wasn’t really enjoying anything either, even thrift shopping believe it or not was not working it’s usual magic.  When you do get disconnected it’s not pleasant and you distance yourself from everything and anything. Hence me not blogging. (This isn’t to say any time I don’t blog I’m feeling that way, sometimes I really don’t have much to say)  I realize (now) this is part of a defense mechanism I have from dealing with the trauma of Thomas being aggressive with me.  I feel like “still??”  This is still freaking affecting me?  My gosh seriously?  But yes it is.  I guess there is no expiration date in dealing with things that are traumatic in your life.

Speaking of Thomas, he will be home this weekend for Mother’s Day.  I’m glad he’ll be here and he’s really looking forward to coming home. 

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?

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.

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?