Monday, August 18, 2014

The power of routine - and electricity!

Ahh... routine.  From the outside looking in, it may not appear that we have one, yet we do. Not only do we have one, we depend on it like oxygen to breathe some days.

We understand that change happens in our routine but it usually comes with explanation and understanding. When it doesn't, it's a quick reminder of how different our lives are as we can't easily just go with the flow of what life throws at us.  Today was a beautiful example of that.

And by "beautiful" I mean the "slap in the face obnoxious reality" that is our life.

Today was the first day of school.  Allison was the first awake (slight concern on my part that it indicated the end of the world but turns out she was just excited) and nicely woke up myself and Parker.  We had a wonderful, quiet breakfast (minus the cats fighting), were dressed and ready 20 minutes early.  If only every morning went this well... I'd totally toss my name in for the Mother of the Year award!

Drop offs went pretty smoothly and  I quickly settled into my work day.  After adjusting to the extreme quiet in my house, I was able to easily focus on work with only the occasional twinge of worry about the kids.  I knew if I was needed my phone would light up, there would be no hesitation - the staff would reach out to me.

There was an early 2:15 dismissal today for the first day, which - is fine.  It's the after school routine that is critical, especially today.  Today starts off as a reminder of what to expect from now until the end of May (or mid - June depending on our snowfall!).  Today was the reminder that while we are making the big shift back to school, we will easily slide right back into our after school routine.  The same routine we have done for EVER.  It's consistent.  It's reassuring.  It's decompressing.  It's important.  Especially today.  Today is the first day which means it sets the course for the entire year.  Today going great and reminding Parker that he can depend on our routine during the new changes to his life - priceless.

So, no,  I was not happy when at a little after 2 the power went out.  I did, what seemed natural to me, I quickly logged onto the website to be sure my bill was paid.  It was, it turns out the entire town was without power... including the schools.  Not the best way to finish up the first day but - survivable - I just needed the power to come back on before I finished picking up the kids.

I knew the odds of that were slim so I began to prepare Parker as soon as I picked him up.  I let him know that at home, just like at school, we did not have power.  On the drive to get Allison I reminded him that no power meant no lights AND no TV.  We told Allison after we picked her up so she would be prepared as well.  What I didn't think of was exactly how much of our home depended on electricity that impacted Parker's after school routine.

When Parker comes home he:
1. Turns on his inflatables.
2. Turns on the TV
3. Scans the recorded program list from the day to be sure nothing was missed.
4. Has a super crunchy snack while watching his shows and unwinds from the day.

We don't talk during this time.  It's his time to unwind.  I go back to work, Allison has her own routine.  This works amazingly for us.

So, here is the importance of Power in our lives... our entire routine depends on it.
If Parker can't do step 1, he'll attempt step 2.
If he can't do step 1 or 2 he'll obsess on it until it happens - or we pass out from exhaustion, whichever comes first.
We never make it to 4 which is the most critical step.  While a crunchy snack may sound like not a big deal - when you are 15 and in sensory overload needing to decompress from your day -- a crunchy snack is essential to regulating your body back down to calm.

While I prepared Parker for no TV and no lights, I never thought about the inflatables.  My heart sank when we walked in and he immediately tried to plug them in. He was very upset that they would not work.  A tear or two streamed down his face while he said, "Come on, buddies, you can do it... get up already" ... but, no luck.

I tried to explain they could not work without power.  Something Parker would understand if  there was a thunderstorm or bad snow storm but for a perfectly beautiful sunny day to have no power - and for him to come home to that, not be here when it went out... he couldn't wrap his mind around that.

After 20 minutes and multiple outlet attempts he moved onto the TV.  He knew the TV channels wouldn't work but didn't understand why he couldn't watch a DVD like we do when we lose our satellite in a storm.  When he finally accepted he couldn't watch it on the TV there was a whole different explanation as to why I couldn't eject the DVD for him to watch on the laptop. That went exhaustingly well...

By now I had messaged my boss, extending my lunch hour, knowing we were paralyzed until I could help him find something that would work.  We had options... lots of them.  Options that he loves.  It's just that none of them are part of our routine.  So, in the world of Fragile X... they really aren't options at all.

He didn't want to swim.  He didn't want to play anything on his iPad.  He didn't want to watch Netflix.  He didn't want to go to the park, for a drive or anywhere. He didn't want to lay down or snuggle or even have a tickle war.  He didn't want to play Uno. He didn't want to go through his backpack.  It wasn't time.  He wanted - and more importantly - his body needed - his routine. 

Without steps 1 & 2, I couldn't get him to step 4 and he really needed step 4.  His body and his mind needed step 4 to get us onto the rest of our evening routine that would include going through his backpack, talking about his day and planning for tomorrow.  I couldn't jump ahead in our routine either or change the positions of each thing, especially with no idea how long we'd be without power.  I couldn't afford to make promises I couldn't keep at this moment. (or really ever).

While I was working through this with him, Allison had taken my suggestion to do her home work early just in case we were living by candlelight this evening.  For Allison, this change in routine was easy.  She understood what was going on and quickly sat down to begin her homework while I worked with her brother.

As I was trying to get Parker interested in one of his iPad games (aka, I was buying him tokens), I was glancing through my emails from work when I noticed a notification from Facebook that I had an email.  Not expecting anything out of the ordinary, I switch over and opened what would take me from the quiet sing songy mom who was helping her son to the mom who felt judged, alone and outraged.

I had posted on Facebook that I really needed the power to come back on before I got my little guy home.  Nothing horribly whiny just a bit of frustration knowing what this change of routine would do to him.  I wasn't alone.  I saw many people post about their frustration.  And a handful of people suggesting people stop complaining and start interacting with their kids - taking advantage of this time together. I was really indifferent to any of the posts until this email came through which read:

"Hi Holly, 

I noticed your status update about no power.  Here's a thought, try talking to Parker and Allison and spending time with them instead of putting them in front of the TV.  You might learn something about their day."

There are times I feel the need to justify my children's disabilities, explain and most of all educate.  I do this frequently.  I am really adamant  about raising awareness and people understanding Fragile X and how it affects my children.  And then there are times I have learned to stop and walk away - that does not come naturally for me.  It's definitely a learned behavior ;-)   This was one of those stop, bite tongue and walk away times.

While it frustrates me to no end that someone would find sending an email like this appropriate I also know that their mind is made up.  They believe they understand and can easily solve whatever has come my way.  Then there is the reality that is our life.

The reality that something this huge sends my son into a tail spin.  The reality that I am focusing all of my energy on helping him through this so that he keeps control of his body because the last thing I want is more bruises.  The last thing HE wants is to physically lash out.  This takes all WE have to keep things happy and moving forward and working through the change.  Because we are not a normal family.  Change is exceptionally hard on Parker.  Especially change he doesn't understand.  THAT is our normal.

You may not understand our routine but that doesn't mean that it isn't the right routine for us. If you think that I don't talk to or spend time with my children... well that's just laughable :-)  It honestly doesn't need anything more than my laughter.  Laughter is good so I thank you for that opportunity to really laugh today.

More importantly, I'd just like to send a friendly reminder that what is not a big deal to some is excruciatingly difficult to others. It takes everything Parker has to hold himself together and make it through the long school day.  When he comes home his mind and body get a break.  They need a break.  After they've had it, we move on and do many of the things "normal" families probably do too.

It's not always easy being the "different" family yet, honestly, this is the only life we know so it's easy for me to forget how different we are.  I understand, I see things each day that remind me of how different our lives are.  Sometimes it doesn't bother me, sometimes it's crushing.  Either way - I'm yet to meet anyone who has a child with a disability who needs a reminder, no matter how "well intended" that their lives are so drastically different.  Sometimes this will come with frustration... sometimes, I will put out a plea for the power to be restored before our routine is disrupted.  I am, honestly, human after all.  When I (or others do) instead of questioning our parenting trust that there might just be more to the plea than you are aware of.

Just - support each other.  Suggestions are great and often helpful - and different from the "advice" I was given.  Not every detail needs to be given for that to happen.  Embrace that sometimes frustration happens and instead of offering "advice" maybe just let them know you feel for them or hope with them for the situation to change.  So much more can happen with a positive response than a negative one.

By the way... as soon as the power came back on - so did Parker's smile... and inflatables.  THIS is the power of routine - and electricity. 

Sometimes I enjoy the differences in my home :-)

Sunday, August 17, 2014

Back to whaaaaaaaaaaaat? Already? School.

Deep breath in... and exhale.

Ready or not - here we go, again.

Back to school.

New shoes are laced up, new back packs are filled with new pencils, paper and supplies, new gym clothes are washed and ready, new clothes are laid out.. in every sense of the word we are ready.

The kids are beyond excited, Parker is ready to return to the routine of the school day and Allison loves school plus has her BFF is 7 out of 10 of her classes each day.  There is an excitement between them to start their 10th and 6th grade school years.

As their mom, I have my "this is going to be awesome" routine down.  It's my job and, God knows, it's my wish that this be the most awesome year to date.  I've done all I can to start it off that way.

Raising children with special needs takes a little bit away from the go with the flow.  There has been planning, outreach and IEP re-writes since last Spring and over the last couple of weeks to ensure this year is ready and better than the last.  All I can do now is hold my breath... and pray.  Pray that the planning has paid off.  Pray that each year that has led up to this one will have made a difference.  Pray that this will be a wonderful school year.

You see I'm not that mom counting down the hours until I can send my kids to school.  I like having them here. I like knowing they are safe. I like knowing they are happy. I like knowing I can keep them protected and smothered in love.  I'd keep them here every day forever if I could.  (Minus the days I could send them to Grandma and Grandpa's house because let's face it - my sanity is important too!).

The start of each new school year is intimidating for everyone, I am sure.  It's a little more intimidating to special needs parents.  You send your kids to school with new crayons and paper... we send our kids with detailed Positive Student Profile's and binders of "how to's" for our teams.  Yes teams.  Your child has a teacher, our children each have their own team.  A team of teachers, parapros, therapists, administrators, advocates... basically everyone and them some to cover all the basis.  And we meet on a regular basis to come together to help create a path for each child.

I'm fortunate that for Parker, who is now going to be a SOPHOMORE (insert me hyperventilating here) that his team will be consistent from now until graduation.  For Allison it will continue to grow and change - but, her needs are extremely minimal so there is less pressure there to educate the team to the degree I do for Parker. That doesn't mean I worry or prepare less for her though either.

School is scary.  While Parker has a para pro (one on one aid) with him throughout his day, there is that part of me that still worries - the "what if's" of the day.  Here's the thing...despite Parker's increased and improving language, there is still so much he simply cannot tell me.  It takes a boatload of trust in the world to ever let him out of my sight.  I have to, he needs it for his independence.  He's 15 and one day will be on his own.  I have to let him out of my sight.  That does not, for a single second, make it easy.  Each time the phone rings, my heart stands still in fear that something has happened to him.  I worry about him being bullied.  I worry about him not having friends.  I worry about making the right decisions for him - because those are on me.  Picking his classes, lining up events, picking out clothes... so many details of Parker's life is all on me.  No pressure there at all.

The truth is Parker thrives at school.  He loves being at the high school, he has a phenomenal team.  He's had the very best teachers, para pros and therapists  working with him over the years to get him to where he is now - and that's a pretty good place.  It doesn't remove an ounce of my worry.

Allison struggled last year with her transition to Middle School.  Her circle of friends was split up she was very much alone.  Her anxiety rose to new levels and, for the first time, she struggled both socially and academically.  It was not her best year - or even close.  She finished the year off beautifully, pulling her grades up to all A's and B's and quickly jetted off for 10 days of horse back riding at the end of the school year to find her balance again in life.

While she's more than ready to take on 6th grade with her BFF by her side, her anxiety continues to show itself in new situations and more openly.  Her fist clenching by her face with slightly flapping hands has become a part of our every day as we lead up to school starting.  It's a reaction beyond her control and coping mechanism for her.  While her friends get it, others do not and it caused a lot of tears last year as she was made fun of for it.

Her body is growing faster than we can keep up with, standing at 5'2 she is in few ways my baby girl but very much a beautiful young lady.  It's hard to believe at 12 she is so grown up ... that will bring it's own challenges.

I'm just not ready.  I wasn't ready when they started kindergarten and I'm not ready now.  Time goes too fast.  I'm happy with the late nights with Allison and early mornings with Parker.  I'm happy with going back to bed until I have to go to work without hustling to get everyone fed, dressed and dropped off.  I'm happy with friends coming to swim and play where I know everything is good.  I'm happy.


I'm also still going to send them back.  I'm extremely thankful for so many amazing teacher, parapros and therapists who work so closely with my children.  I am thankful for their friends and for their friends' families who love them as their own.  I am thankful... and I guess ready to get this school year started.  Mostly because I don't have any other choice ;-)

Wishing everyone the most wonderful school year ever!

Tuesday, August 12, 2014

Please keep talking to my son

Earlier this week Parker and I were in the grocery store checking out.  The young cashier told him she liked his Teenage Mutant Ninja Turtle (TMNT) shirt.  Parker responded by kicking me in the shin.

I reminded him to say "Thank You" ... three times.  He finally mumbled "Thanks".  I took it.

As she continued to scan our groceries she said, "Have you seen the movie?"  Out of nowhere a strong 15 year old hand smacked the back of my head.  I think it hurt the cashier more than me when it happened.

I simply said, "Use your words.  Have you seen the movie?"  He replied, "No."  I reminded him that was not true.  He had just seen the movie a couple days prior.  He sheepishly said, "Yes".

Without initially thinking twice the cashier said, without skipping a beat, "did you like it?"  This time I noticed she winced a little as soon as she said it with the panicked look of "why can't I stop talking?" across her face. I did my best to reassure her with my smile while I pleaded in my mind "Please... keep talking to my son."  We both waited and then it happened, a full body shove that almost knocked me over "GO MOM" said the clearly stressed voice of my son.

Without looking at him, only in his direction I calmly said, "We're not done here. You need to be patient and use your words. Did you like the movie?"  He grumbled, "no."  I said, "That is not true at all.  Parker Roos, did you like the Teenage Mutant Ninja Turtle movie?"  "Yes" he replied with a deep sigh as our groceries were all placed back into our cart.

There was a look of relief on the young girl's face.  You could see she wanted to carry on a conversation but also was concerned for me.  Understandable so as Parker towers over me these days.  However, I need for her to have these conversations, they are so important in my son's development.  Because of that we stood paused as I said, "Parker, say goodbye, please" and waited - not knowing if there would be a physical response or a verbal one.  It was, again, physical as he reached over and pinched my arm.  I quietly responded, "Parker, please say goodbye"  "Bye" he said under his breath but loud enough to be heard.

"Thank you for using your words, I like that!" I responded.  The cashier and bagger both said goodbye, I quickly said, "Thank you" to both of them as Parker and I started to walk out of the store.  Within our first 3 steps we were already reviewing what to do.  It's an important routine for us.

"Parker, when someone says "Hi" to you, what do you say?"
"Do we hit when we say hi?"
"No, use my words"
Nice hands?
"Nice hands."
"What would Grandpa do if someone told him hi?"
"Say Hi"
What would Grandpa do with his hands?
"Give hugs."
I need Parker to be like Grandpa, nice hands, nice words.

Reminders.  We go through them daily.  Before we enter the store and after.  It's not just at the store. It's every single time we leave the house.

The past couple of weeks have been our roughest of the summer.  I was gone for a conference and school is quickly approaching.  While he loves school and is more than ready to return, there is the anxiety of the new routine and returning to school too. It's made our recent outings a bit more difficult but an incredible reflection of where we used to be and where we easily will be again without interaction from others.

The most common thing I hear from people when they try to talk to Parker and he physically lashes out at me in response is "I'm sorry, I should not have said anything to him."  Noooooooooo.  That could not be further from the truth.

Do I want to get hit/kicked/pinched/shoved?  Gracious, NO. 
Do I want my son to learn how to have basic greetings and conversations while in public that casual and not scripted?  YES.  That is life.  Yours.  Mine.  And it needs to be his.

That is only going to happen if you keep talking to my son.

The only way I can help him is for you to help me.  I need you to keep talking to my son.  I know that when he's struggling, like he is now, this isn't easy.  I understand that is because you are concerned for me. Please let me help you through this so, together, we can help Parker.

I need you to know that I am always anticipating the worst.  I have to, it's sort of my survival mode.  That said, there is a difference between anticipating the worst and expecting it (in the mind of Holly).  I don't "expect" it to happen, odds are it won't - at least not the worst case scenario - however I need to "anticipate" it and be prepared.  That's crucial. 

When we leave the house we talk about how we might run into someone he knows who might want to say hi and what we will do.  We talk about how we might run into someone that mommy knows and they might want to talk to just me and what we will do.  We talk about how we might run into someone who just knows and wants to talk to Allison and what we will do.

And we practice.  Every time we leave the house.  Every time.

I know that each time I see someone it's a 50/50 shot either he will hang his head and reply with his words or he will physically reply in an attempt to escape the situation.  I am ready for that.  This isn't new, this has been our life for as long as I can remember.  That said -we've made HUGE progress.  Right now, we are in a moment of setback and we need to increase Parker's interactions to get us back to where we were.  I need you to talk to my son when you see him.

As much as I anticipate the physical reaction and the worst case scenario - I also expect Parker to show me how far he has come.  I expect him to respond positively.  I expect him to work through it when he doesn't.  It's not an option, it's a life skill he has to master.

When he does well, I am the first to praise him.  Those moments are my favorite and I need more of them - which means I need you to talk to him.

Here are my tips to talking to Parker.
1. Always say Hi.  Always.
2. Keep it brief.  Pick 1 question, maybe 2 for him to answer.  "How are you?"  "Are you ready for school?"
3. Always say Goodbye.  Always.
4. Give me time to work him through a response.  If he doesn't respond verbally, give me the opportunity to help him find that answer.
5. Compliment his words.  "It was nice to hear your words today"  "Thank you for talking to me"

Parker can communicate with me.  That's easy.  He loves his Momma more than anyone, I'm easy for him to talk to.  His anxiety comes into play when we are out and about.  This is a life skill that is important for him to master.  So please... keep talking to my son.

I know sometimes it's hard.  I know that you don't want to see him react to me.  I can only change that behavior by repeating it and replacing it with an appropriate one.  That's going to take your help.

So please, when you see us at the store, the doctor's office, or out and about take a moment to say "Hi Parker"  even if nothing more is said... that "Hi Parker" is a tremendous example of a greeting for him to model.

He'll get it... I promise.  And when he does, it'll be crucial that you continue to keep talking to my son

Monday, August 11, 2014

When depression wins.

I've written on depression more times than I can count yet I only recall briefly sharing about it once.  There is an incredible fear within me over discussing my depression, one that stops me from clicking “publish” and instead keeping the writing tucked away.  I imagine I am not alone in my fear of being open about the role depression plays in my life.

Today our world lost an incredible soul, the talented Robin Williams.  Sadly, I am positive that today the world lost many other incredible souls who’s names we may never know  to what may have been the same cause.  Initial reports indicate the death of Robin Williams to be suicide due to asphyxia .  While my Social Media feeds flood with respect and condolences, they also flood with confusion to some and understanding by others as to why.   Unfortunately, I fall on the side of understanding.

Two quotes keep catching my eye…

The 2nd brings me to my laptop tonight to write, to share, to pray that my words might help someone feel a little less alone in the struggles they face every day, more importantly to reach out for help that they may need.

The anxiety that is running through my veins right now over putting this out for the world is overshadowed by my need to help others.  It’s sometimes that desire to help that buries me too.  Life is tricky that way… you’re going to have to bear with me as I unravel this thread. While I always thought keeping this thread wound tightly and close to me was best, my heartache from this news tells me otherwise.

I never knew Robin Williams personally.  I never had the honor of meeting him or even seeing him perform live, yet I feel like I've lost a close friend.  Some people naturally have that impact on the world, he was certainly one.  In a way, I feel like I owe this to him… to you… because something has to change in our world.  My friend, Tim, may have said it best.

It's time, as a nation we stop the stigma and start the help.  It's time.  We've lost too many.  We've suppressed feelings way too long.  It's time we focus on helping those who need  it without consequence or judgement. 
Depression, in my life, is a tricky demon – one that I will likely forever battle.  I refused to acknowledge it for years.  Very, very few (ok, one – well, two) know the depth of it.  It wasn't until a couple of years ago that I realized the depth of it.

I am often described as “one of the happiest people” and it’s true – sometimes, I am.

I thrive on helping others.  I would lay down and cover a puddle with my body so you didn't have to walk through it if that was what it took to make your day better.  Helping people, bringing people together, listening, offering advice, getting people to a better place, motivating, attempting to inspire… those things fill my heart with such peace and contentment it’s hard for me to describe.  Part of me is exactly as happy as I appear - all the time.  I can’t help it.  I love, more than anything, making other people happy.  I am a giver by nature.  I tend to carry the weight of the world on my shoulders in attempts to make everyone happy and keep the peace.  Not exactly the face of depression… yet it is, exactly the face of depression.

Depression isn't always visible. It doesn't always stop us in our tracks or leave us in bed. There is a misconception as to what it looks like, the efforts people people take to mask it and get through each day.  Often we continue on fighting with all of our strength to continue to do good, help others… make people laugh.  The vast majority of people I know who openly struggle with depression are the people who are trying so hard to change our world and make it a better place.  Maybe it’s who we are, what we are born to do… and maybe it’s our glimmer of hope that if we can make the world a better place the demons we fight won’t survive the good we have created.

I don’t know.  I only know I have to keep trying.

Years ago I was shocked to learn from my dear friend, Dan who I've worked with many comedy club fundraisers on, that many comedians struggle with depression.  It didn't make sense to me.  How could people who are clearly so talented and bring so much laughter to others be so sad? The realization was eventually clear; they can the same way I do. 

It’s a difficult burden to carry inside especially when you live your life in a public way.  There are high set expectations – even for me.  I’ll always be here, I’ll always have an answer, I’ll always make time for you… and I do.  I do because I don’t ever want anyone to feel alone.  I know how that feels, I don’t wish it upon anyone and I do all I can to make other’s lives better. I also need that for me. I need to be able to help you as a way to help me. We all need to be needed.

I think that is one of the many common misconceptions with depression that you will know by looking at us or talking to us that we are struggling.  The truth is, that’s not likely.  We live behind guarded walls, letting few in and even fewer really inside the protective compound we have created. To the rest of the world, we are just fine.  We get up, go to work and sometimes even make the world a brighter place.  We do that with our demons tucked inside.  We spend so much time caring for others we forget how to let others care for us.  We also fear the judgment and consequences of sharing our struggles.

When I hit my lowest, I reached out to my best friend who encouraged shoved me into seeing a doctor. It took 2 before I began to open up and find a professional I trusted.  Even at my lowest, I knew there had to be a line to my weakness. My children are the reason I breathe every single day.  They are the reason I smile, the reason I laugh, the reason I fight for this world to be a better place.  They are my everything.  They are the reason I have a line, the reason I will always be right here, in person. I owe the 3 of them (my children and my BFF) everything I have as a Thank you for never giving up on me and always being there, I am forever grateful for them and I do my best to tell them daily the importance they have in my life.

I was asked early on  “Would you ever hurt yourself?”  Well, no.  Of course I would never hurt myself.  I don’t like pain, I see it as pointless, no… I’m not going to hurt myself.  I also knew that wasn't what they were asking.  It was the answer I knew I needed them to hear. 

During a later visit I said, “In all honesty, the answer is no.  I would not hurt myself.  That said, I don’t see suicide as hurting myself.  It’s in it’s own category.”  I will never forget the look on my doctor’s face.  It was the moment they realized what only my BFF knew.

Have I thought of suicide?  Yes.  I have thought of every single reason it seems as though it is the most logical answer to every problem I face, to every demon that haunts me, to every moment (and there are many of them) I feel as though I only fail. I know how it feels to sink, to feel as though I'll never surface and to gasp for each breath.  I know.

For me, it’s only a thought that will forever be outweighed and dimmed by the 2 loves I tuck in and kiss goodnight each night.  To the ones I brought into this world to love and protect – to my BFF, my parents, my family, my friends...  they complete me in an unexplained way.  

I've seen what suicide does to those left behind, I would never do that to them. I could never do that to them.  Instead, I fight the demons inside of me. I have learned, thanks to my BFF and amazing team, to reach out for help when I start to sink and just as importantly, recognize when I am sinking.

I limit who I am close to and who I trust.  I am careful to surround myself with people who have incredible strength and positive outlook.  Their energy helps the positive thoughts in my mind flow when the tears want to fall.  More importantly, they believe in me.  I need that too. 

Depression is dangerous, it needs to be recognized, treated and understood.  People need to see they can be both depressed and amazingly good at the same time. Then they need to tip the scale so the amazingly good outweighs the depression. It's often hard to do that without help and support.
I can be extremely good at what I do, both professionally and as a mom, love my life and still be stuck with this demon trapped inside of me.  Some of the most amazing, help anyone, positive people I know… are also struggling to fight the demon of depression that lives within each of them. 

I would like to believe that I am one that is winning the struggle but,  (which is why I am writing tonight), some days it’s a vicious tug of war and it takes my entire team that anchors me to not only win but to get out of bed and start new the next day.

It’s not something you choose.  Depression isn't a choice.  It’s not something you “just get over” and move on from, it’s a draining part of your daily existence.   I cannot even begin to express the importance of reaching out for help.  I understand the fear in doing so.  I do.  I also understand the difference having someone to talk to, the right medications and a clear path makes in silencing the demons so you can not only function but thrive.

You’re not alone.  Please understand you are not alone and there is someone there who can help you. Your work, my work, our time here... it's not done.  We have so much more wonderful, positive things to accomplish... and we will.  We can do this.

If you are not struggling, if you do not understand those who do... please - stop and think of the people in your life.  Do they realize their importance?  Their value?  Do you?  The next moment is never guaranteed. Make that phone call, send that text or email and let those in your life know how important they are to you. Send flowers, stop by unannounced, make time for lunch, a walk together or a late night phone call.   Never stop telling them those you love how much they are loved and the importance of who they are.  You never know when it will be the one thing that made all of the difference in the world… and you may be surprised with who really needs to hear it.

If you or someone you know needs help, 

please call the National Suicide Prevention 

Lifeline at 1-800-273-TALK (8255).

RIP Robin Williams.  Thank you for the gift you were to us.  May you find peace, laughter and be comforted in a way you longed for. May you find peace. My thoughts and prayers are with your family, friends and our world as we find our place without you here in our lives and appreciate the memories forever captured for us to hold onto.

Thursday, August 7, 2014

The journey of disability

Recently it was made pretty clear to me that I am not exactly at the point in my life journey that I thought I was, particularly in the special needs world.  This should not have come as much of a shock to me as we are 11 years into our fragile x  diagnosis – yet it did.  It left me reflecting on where I was, what I wish I knew and where I am headed.

To my surprise, I am no longer that new mom full of hope and conviction that my son will overcome every aspect of his disability. That’s not to say I do not have hope and conviction, I have plenty and some to share – it’s to say I am much more grounded with the reality of what is our life and his future.   This surprised me as many days I still feel like a new mom as we tackle new obstacles in our journey of life.  But, I’m not. Experiences are new but my perspective is significantly deeper (Thank you Cindi).

I realized that at some point in this journey I crossed a bridge to another side.  I’m no longer that young mom convinced there will be a cure for my son and he will marry and have children one day.  I accepted a long time ago that Parker was “too old” for a “cure”.  A “cure” would be for someone not yet born… for Allison’s children… but not for Parker.  He had become too old.  I do still believe it’s possible and will be seen at one point.  What I anticipate for Parker is an “effective treatment”, while not a “cure” something that will significantly improve his life.  I saw a glimpse of that once with the Arbaclofen.  I know it’s possible and we will see it again.  I’m just not so sure when and understanding it’s going to be awhile with the recent setbacks in our drug trials.

On this side of the journey, I focus less on the “what if’s” and the “he’ll do it even if no one else ever has” and focus more on the day to day skills he will need to be independent.  I focus on what’s available (or not at all existent) in our community and how to use or bring in those services to better serve his needs as he reaches his independence. 

I have went from that mom who told the very poorly “educated” geneticist that Parker will “live with his mom forever” to knowing the importance of his independence and creating a plan and time line to see that through.  I’ve accepted I won’t live forever and it’s certainly not fair to keep Parker with me until I am no longer here…. It’s not fair to him.  I need to see him thriving on his own, working in the community, surrounded by friends, happily independent as possible for him while I am still here so I know that when I am no longer on this earth – he’s going to be ok.  He’s going to be thriving on his own with the appropriate supports in place.

I’ve accepted the reality that I likely need him way more than he needs me.  Creating his independence and moving him along by his 25th birthday will likely be the hardest and scariest thing I have done to date, because I count on him as much as he counts on me.  I know it will be what is best for us both, even if we struggle through parts of it.  I would rather we struggle through it together than have him in a situation where as a grown adult I am all he knows and then one day I am gone and he will be forced to start new alone.  I can’t do that to him.  Therefore… the plan.

I anticipate when that happens, I will cross another bridge of this journey.  Like the one I have already crossed, others before me have successfully made it to the other side and continue to thrive.  In time, I will too and hope that the paths I have taken are a bit more cleared off for those following behind me.

It’s in the path clearing part of the journey that I have been reflecting on that has brought me to write tonight.  The reflections of what I didn't know that I’d love for those in the earlier stages of this journey to understand.  Maybe someone told them to me and I was too consumed with untangling the web of what this path was to hear them, maybe some who read this will be in that spot too, but hopefully these words will hold tight with some and bring comfort as you take this journey you did not plan.

I’m sure there is more, I will likely add to this list over time but in my late night ramblings these are resounding through my mind.

There are going to be times when you feel lost and like everything is over your head while trying to understand the diagnosis, sometimes hours, sometimes days, sometimes weeks…  and that is ok.  In fact it’s normal.  Even if you are a doctor who specializes in your child’s disability – this is your child, which is a game changer.  You will figure it out. Do not give up. Keep reading, keep asking questions, keep pushing ahead.  You’ll get it and understand it better than many of the professionals you will meet. You’ll become the expert and share your knowledge.  You need to.  This is important.  (and then something new will come along but no worries, you’ll eventually get that too!)

There are going to be days when you want to bury your head in the sand… that is ok too.  Just don’t stay there.  There is nothing worse than sand in places it doesn't belong.  Dip your head, enjoy the quiet, regroup and resurface stronger.

You are going to lose friends…that one person who was the first friend to come hold your beautiful new bundle of joy? That one person who you are convinced will be there forever?  You’re going to lose some who you least expect.  It’s inevitable.  Some will slowly fade away while others will boldly tell you the diagnosis and disability is too much for them to deal with/watch you go through.  Years will pass, you will see them at the grocery store and instantly remember the times you spent laughing and sharing plans for the future and hurt. Part of you will only see them through the eyes of a stranger as you cannot comprehend how they moved on and away.   You will be ok.

You are going to find friends in the least likely of people… that casual acquaintance you kind of knew from your child’s pre-school or from church, you will discover an amazing gift of understanding, support and friendship in them that will be life changing to you.  You will wonder how so much time passed as acquaintances and appreciate their friendship in a new light. You will treasure these people the most.

You are going to meet people in this journey who walk in your shoes… It will not matter if you are minutes or miles apart, there will be an understanding between you that those on the outside just won’t understand, an unbreakable common bond that will forever hold you together in a new family… and they will complete you.

You will have (many, actually) a friend who is the parent  of a typical child look at you and say “I don’t know how you do it, you are a super mom/dad” … You will learn to juggle therapies and IEP meetings becoming your child’s biggest advocate while quickly catching vomit in your hands without blinking and thinking nothing of wiping the bottom of your almost adult child while keeping a household moving along, working, fundraising, raising awareness and attempting to keep your sanity. And… it’s true… you are super human.

You will look at your friends who are parents of typical children and say “I don’t know how you do it, you are a super mom/dad:… as they run their child to multiple sports practices and events, chorus, band, every school activity imaginable and juggle homework, keeping a household, working, volunteering  and never breaking a sweat…. And it’s true… they are super human.

You will learn the real feeling of pain when your child is excluded or asks you why they are different… you will also discover your bravery and pass it along to them, sometimes sharing tears and other times holding them back until you are alone.  They will feel your strength even when you believe you are weak and grow from it.

You will learn every trick from every parent and specialist for every imaginable situation… and 99% of the time you will apply them successfully but that 1% of the time that you don’t you will have a hard time forgiving yourself for.  Remember, you are human.  We make mistakes, we don’t always get it right, we learn from these moments.  We learn to forgive ourselves and move forward so when it happens again, because it will, we will handle the situation differently. You will accept you are human.

In your effort to learn and understand, you will join every online support forum you can find… and discover some are more harmful than good.  Sometimes you need to step away, regroup and come back.  You will learn that even in this new world where you are all walking down the same path, the shoes are different sizes and we all walk differently.  Some people will not get past the anger.  Some people will have far more complications and you will feel guilty for having it “so good” and some will lift you up and help you fly.  You will need to find that balance and not let this consume you.  Balance is important.

Something bad will happen and, while not directly to you, it will greatly impact your life and you will need to find your peace… in the disability world bad things happen and become easy to dwell on.  Children are abused, neglected and sometimes even die – both at the hands of others and unexpectedly by natural causes.  You have to keep a level of distance between yourself and the situation or it will consume you.  You will learn to use these times to advocate, educate and most of all appreciate.  You will find your balance.

You will read and hear every worst case scenario known to the world…and it will be important to stop.  You need to find that safe place of positive, through inspirational families and their stories, through friends, family and strangers who are willing to open up.  You will sometimes need that one safe place just to celebrate the good, every inch stone that we treasure and in the company of those who get it.  When that place doesn't exist… you will create it.  (Like the Fantastically Fragile X Brag Room… our happy place.)

You will meet the most amazing people you never knew existed and they will become your closest friends… parents, teachers, parapro’s, therapists, specialists, researchers… you will need each other and discover the importance of those you can simply look at and begin to laugh because they already get it.  They will be the people who help your child succeed, who push with you the limits of what is possible and cry tears of joy and pride with each accomplishment.  You will embrace them.

You will discover that more days than not, your hair is perfectly acceptable pulled back in a pony tail and even when you are insistent it will be down and maybe even curled (hahaha) by the end of the day it will be pulled back and out of your face… and you will be perfectly fine with this choice of style no matter where you are going and validate it’s appropriateness.

You will lose yourself… don’t let it be forever.  You will put everything before your needs.  You will take amazing care of everyone but yourself.  Stop and change that.  It will be important that you care for your mind, body and soul with the same passion and attention you do for your child.  You won’t do this for you, so do it for your child who needs you.  Learn to take time outs, a walk, a drink with a friend, exercise, yoga, a time out sitting under the stars in the back yard before going to bed… find what you can make work and take care of you.  This will be one of the hardest things you do.

You will one day be in a better place, happy, content, life will be good… and then your child’s peers will start playing sports, getting their driver’s license, going to prom, graduating… and you will slip back into a place of sadness and grief.  You will mourn what isn't, appreciate what is and move forward again.  You will learn to accept this is a cycle that never ends and starts over when you least expect it.  You will find the balance to help as you travel on this journey. You will understand the cycle.

You will appreciate the things in life your friends with typical children don’t even realize happen…. We (Paula, Melissa and I) call them inch stones.  While everyone celebrates milestones in life, the inch stones are often over looked.  Without the inch stones, milestones are never reached.  While we often take longer to reach the milestones, we embrace the inch stones with every ounce of who we are and celebrate them! From zipping zippers, to pulling up pants, to blowing a nose… we see life in a way not everyone does.  Time slows down for us, take advantage of that to appreciate the incredible things that happen each day, no matter if they happen when your child is 1, 5, 15 or 45… celebrate when they happen because life should be a celebration of accomplishments.

You will be ok… really.  You will.  You may struggle with anxiety, depression and thoughts of wiping out your entire IEP team but in the end… you are going to be ok.  In fact, you’ll be better than ok.  You are going to be amazing.

Remember, no matter your diagnosis you are not on this journey alone...  Reach out to those on it, they are always there for you.  There is amazing strength from being around others who live with the same challenges, fears, frustrations and successes.  Embrace those.  Find the support group, find the foundation, find those on your path and embrace them.  This journey is so much easier when traveled together than alone – and you are not alone!

This journey isn't one any of us chose but it’s the one we are on.  It will reshape our lives in ways we can’t even imagine or predict but we can embrace.  In this journey where so much will feel out of our control, it’s important to remember just how much still is in our control.  Take time to really take in the laughter as much as you take in the knowledge.  Take time to take care of yourself as much as you take care of the world around you. Take time to hope as much as you inspire.  Take time to build friendships more than you build walls.  Take time.  We only get to take this journey once and it goes so incredibly fast… stop and take time.  Just time to take it all in before you know it you will have crossed one of the many bridges into a new part of the journey, don’t let it happen without appreciating the steps you are taking today.

Saturday, June 28, 2014

Pinterest, Paper bag floors and pictures...

Ah... the toy room.

Technically, it's a "bedroom", 16 years ago it was my Master Bedroom but with wanting to keep all of us on one level it became the toy room.

It's served it's purpose as the place to play Wii, play on computers, drag out every toy imaginable room.  Which was not the worst thing in the world, as - it was a bedroom with double doors - that I simply kept mostly closed.

Over few months, one of the cats has decided that the back corner of the toy room would make the most awesome litter box! Nothing I did was fixing this problem.  The 16 year old carpet was already nasty, after 2 dogs, 2 cats and 2 kids... it was really nasty.

I knew pulling up the carpet was inevitable so I started researching my options.  As a single mom on an extremely tight budget I knew that hardwood was definitely out, carpet was out - not just because of the budget but also because I seriously dislike carpet at the moment.  After some dedicated Pinteresting, I discovered the "Brown Paper Bag Floor" - and I was sold.  I read what I could about it and started saving back.

While my heart was ready, the rest of me was not.  Until Parker had a little bit of a meltdown and one of the doors was removed from the toy room.  That was all it took, within a few minutes I had both doors removed and quickly fell in love with the open concept leading into this room.  It makes it more inviting and pulls it in with the other rooms on this level.  That was all it took for my mind to jump into gear and start to visualize what I really wanted from this room.

It took a lot of time, extremely dedicated work, and the stars lining up for great result (and I'll post the how to below) but... I am thrilled to say this is my before and after (after for now - I still have more to do with accessories but I have to save for that to happen and, honestly, am not in a hurry!)

So......... Here you go..... Before and after side by sides...

Our old toy room and new family room!

So... here is what my Facebook friends have been waiting for - the start to finish including the how to of the paper bag floor!

First, everything had to be cleaned out of the toy room -

Including the carpet *Insert cheering here*

Except it was a major job and a bit of a pain.  Thank you so much SE for your help with this! 6 hours - YES, SIX HOURS later the carpet, tack strips and staples were finally all out!

 This ridiculously long process is very necessary as you HAVE to get ever single staple out, if you don't you will be able to feel it through the paper bag floor.  Trust me, after about 3 hours of pulling out staples you each time you see this -

 You will hear this song in your head

and yes, it's true.  When you close your eyes, you will dream about these staples.  No lie.

The first thing I did was spray the corner(s) of the sub floor where the cat was bathrooming with the most incredible stuff... Nature's Miracle

while I wanted this to work, I honestly didn't think anything would remove the smell.  But it did! I am so impressed with this product and highly recommend it!

I prepped the floor, which I also recommend, filling in every staple hole and more importantly, if your sub floor is like mine - these massive gaps. Some people lay new sub floors, that simply was not in my budget so I did the best I could to repair this one.

I wanted to paint before I did the floor and went with tangerine for the accent wall, sand for the other walls and a white pebble for the trim.  It was important to me that the rooms flowed - which is why the accent wall is on the back - pulling in the yellow and red from the other rooms.

Paint: $45  Results... exactly what I had hoped for!

With the paint on (and the world's most awesome curtains up - thanks to Amy Z for talking me into the pattern versus the plain!) it was time to start on the floor.

Here is your how to for the paper bag floor:

My room is 14x16, I used exactly one roll of the paper ($12) and 2 jugs of glue ($24).  I bought both of mine at Lowe's but the paper and glue can be found in most any home improvement store.  The paper (called Contractor's paper) is in the paint section and the glue was pretty close by near the stain.

As you unroll the paper, you'll want to mark the paper, while it looks exactly the same on both sides - it's not.  While it won't look like it when the paper goes down, you'll notice it when it dries.  I marked mine with a pencil - all over.

Then Allison and I went to work ripping it into pieces and crumpling it up.  I kid you not, this took us 3 hours.  In-sane.

Allison bailed on me after about an hour - but, I give her total props for sticking with it so long, it really was not fun at all.

I read several different mixture ratios for the glue to water.  I finally went with 50/50. The most important thing I read was that you need to be consistent with the ratio each time you mix. 50/50 was easy to be sure I would be consistent (and others had used it.)

I had read that the best way to apply the bags was to use a thick paint brush to put glue in the spot you plan to put a piece down, lay the piece and then using the brush dipped in the mixture "paint" over it smoothing out the bubbles.

I also read that the best way to apply the bags was to dip the bags in the glue mixture and use your hands to smooth it out.  I tried both ways and for me, dipping it was the best.  It was the only way I could feel if the bubbles were out and really smooth down the paper.  I started in a back corner and did the outer edge 3/4 of the way around leaving the door way open.  You learn fairly quick the right length of time to dip them - too much wetness leads to the paper tearing.  You want to be sure both the top and bottom of the paper is completely wet and covered.

While I didn't wear knee pads while doing this project, it is recommended.  My knees bruised but that paled in comparison to how my back felt. It was really hard on my back.. I'm still recovering from that.

The ripped paper will have sides that are straight from the outside of the paper, use them as your outside wall pieces, they line nicely up against the wall. I separated all of my crumpled pieces into 2 garbage bags at a time, one with all ripped edges and one with straight. You also want to be sure all of your pieces overlap.

About 4 hours into laying the floor, I started to freak out.  It could have been the lack of sleep or the overwhelmingness of how much was left but I decided to start using the brush and doing it the other way.  It was very difficult for me to get all the bubbles out and the pieces smooth using the brush, so I went back to dipping the pieces.  I can tell now, looking at the floor, where I did each kind.  It looks much smoother on the places I dipped it in the glue versus using the brush.

I was happy to see the glue drying, especially since I had read that it didn't for some people - I will say be sure to really smooth out the glue, if there is a bubble - it will dry a bubble.

What became difficult (besides the extreme pain in my back from crawling around on the floor) was after the paper was dipped was seeing the pencil marks.  I was exhausted, I couldn't see the pencil marks on the wet paper so I started just putting it down.  Once it dried... I could easily see that some pieces were facing the wrong way.

The awesome thing about doing a floor like this is that if you make a mistake you can just put a new piece over it!  However, I didn't want to do that , I liked the contrast and I planned on staining the floor so I left those spots as they were but checked for any places I missed and filled them in.

It took - no kidding, no breaks - 10 straight hours for me to put the paper down on the 14x16 room.  TEN hours.  I was not sure I would ever stand up straight again but I loved the finished look!  Now that I know how to do it, if I do another room, I will definitely call a friend or two to come help with this part. If we all started in separate corners and worked our way to the middle and out of the room it would go much quicker.  I just couldn't do that for my first floor.  I wasn't sure what I was doing and it if wouldn't have turned out I didn't want anyone to feel responsible.

I actually debated staining for awhile.  It's important to wait until the floor is completely dry, I waited 24 hours before putting the stain on.

The stain was $8 and when I first put it on - I couldn't tell a difference at all so I went back and read more.  Thankfully my friend, Julie, had lots of articles to share with me on this.  It's very important if you are putting on stain that you let it set for 2-3 minutes before wiping/blotting it off.  If you just put it on and wipe/blot it off it won't do anything.  I have no idea why this is but it is what it is.  *It is important to get the oil based stain!

I loved the results!  LOVED them!  And it only took an hour to do - so total plus!

Everything I read said the floor, after being stained, would never "feel" dry but sticky.  I didn't have this problem.  I waited 24 hours and it felt fine.

Then it was time for the polyurethane, everything I read and everyone I talked to say 8-12 coats.  So I planned on 12. In the end - I did 14 as that is what used up every ounce of the poly I bought.  It is very important that you get a WATER BASED polyurethane.

I used this:

at $40 a can it was the most expensive part of my floor (I used 2 cans) it's also fast drying, allowing me to do a new coat every 2 hours.

I bought a lambswool applier and the universal pole to go with it.  And here's what I learned about that...

"Universal" pole

 "Universal" lambswool holder

The only way to make them fit together?  DUCK TAPE.  Because otherwise, it certainly does not fit together.  At all.  Not even close.

But this worked beautifully!  

Here's the thing about the "every 2 hours" polyurethane - if too much time passes, you have to sand in between coats and there was NO WAY I was sanding between coats.  So, with little cat naps between each coat (which only took about 5 minutes to apply), I stayed up for 28 straight hours to apply the poly. I poured the poly into a painters tray and then mopped it on.  Be sure not to mop it on too fast or you will get bubbles.  If you do, just sand them out before the next coat.

Even for me, who only sleeps 4-5 hours a night, this became draining and about 3 am after a coat of poly, I snuck into the bathroom, sat on the edge of the bathtub and ate a bowl of Lucky Charms.

*Yes, at 3 am - when my children were asleep, I *snuck* into the bathroom where I hid and ate a bowl of Lucky Charms sitting on the edge of the tub. That's how tired I was.

But, 14 coats later - I had the most gorgeous floor ever, completely exceeding my expectations!

Then came to what really proved to be the absolute hardest part.  Waiting.  One full week, 7 straight days before moving anything into the room.  This is extremely important as the floor must cure first.  And while it doesn't sound hard - it was.  I couldn't wait to get the furniture in and start to enjoy the new room.  But, I waited.  Kinda impatiently but waited none the less.

It gave me time to do another Pinterest project while I waited - the photo heart.  Here was my inspiration pin:

I used clear plastic frames, peeling the magnets off the back and using the double sided 3M adhesive squares to attach them to the walls.  The first pattern, set to look like the above pin, that I laid out on the floor - I just didn't care for.

So I started over laying out a heart and filling in around it - coming up with this:

Which I loved.  To transfer it to the wall, I used some left over brown paper and traced each frame (I used both 4x6 and 3x5 frames) onto it then placed it on the wall to be sure it was exactly where I wanted it.

When it was where I wanted it, I marked it off, removed it and cut out the frame spots before re-hanging my stencil.

Then I simply filled in each spot with the frames, later - after picking out pictures with the kids, adding them in using double stick tape to keep them in place.

I added an Uppercase Living peel that I've had since 2009 to the wall to complete it with the phrase "Treasure the time together"  At the moment, this is the only completed wall in the room.

With the goal of the room being a place to hang out, watch tv, movies, play wii and games - I jumped at the opportunity for the free mini fridge a friend was looking to find a home for after now that her daughter was home from college. Conveniently tucked away hidden in the closet...

 This might be my children's favorite part of this room!

(*Again, thanks to Amy Z for talking me into trying the black curtains on the closet! They are perfect!)

While I have plenty left to do (decoration wise, adding more pictures, end tables, etc) and the hope that in time we can add a flat screen TV in here with a smaller, more sleek console for the media equipment - and I need to work on hiding the massive amount of cords I have, add quarter round, a transition piece between the two floors and hide the cord for the mini fridge... for now -
this is perfect and we could not be happier!

The total cost on the room: $239

 Floor $124

Brown paper bag $12
Glue $24
Stain $8
Polyurethane $80

Paint $45
Curtains $40
Pillows $30

While it was a lot of work and my back may never be the same, I am so proud of the results and thrilled that I took the time to give this floor a try!  It's definitely something I'd recommend!  We are looking forward to many years enjoying this space!