Hockey Mom’s Anonymous

My name is Sally and I am a hockey mom.

I am a hockey mom of a female player, and yes there is a difference.  Think about it, a maximum of twenty PMSing females all in one tiny locker room or on the ice together.

I fondly think back to when I was growing up and my dad was surrounded by females. When we started our cycles we were all supposed to track our cycles on the family calendar. We all had our first initial on the date the fun was supposed to start, sounds a little odd doesn’t it?

At first I thought it was just so we would be prepared; much later I learned the true reason behind it; to let my dad know who he couldn’t tease when, to let him know who he might have to walk on egg shells around.  Seriously, sometimes I don’t understand my hormones so how the hell can I expect anyone else to?  PMS is real, now if only in hockey the focus could be on how to use PMS on the ice to your team’s advantage. When PMSing I want my daughter to take the example from “Water Boy” every opponent on the ice should be that one person who really ticked her off and she wants to take their head off.

With boys you can rip into one player, in front of the team, and have no effect on the other members of the team. Girls, especially when there are hormones in play, you are going to impact the whole team. They are not going to focus on the game or drill at hand, they are going to focus on their teammate and how bad they feel for them.

As a hockey mom how does one survive?  I’ve decided maybe we need a survival program.

The Seven Step Hockey Mom Program

Step 1

As a hockey mom, my role is NOT to be the coach, the referee nor the player because I have never laced-up a pair of hockey skates. My role is to be my daughter’s #1 fan.

Step 2

With that being said, as a hockey mom it is important that I take the hockey goggles off. There is no need to put my daughter on a pedestal. She is a part of a team and the success or failure of the team is not going to be dependent on one player; it will depend on the team as a whole. There is no need to compare her to any other player, she does not walk on water and I’ll never spend hours talking to you about how great she is. She is human, she is not perfect, and there is always room for growth and improvement.

Step 3

As a hockey mom one must realize that hockey isn’t the only thing as a parent I’m dealing with. Honestly, being normal, it is quite likely many of us are struggling with one demon or another (gotta admit I’m a Supernatural fan, I see demons often, sometimes I think I live with them J). But if you are living the dream, the happily-ever-after, you need to keep in mind the majority of the people around you are most likely struggling with demons, sometimes on a daily basis and as a hockey mom during the next season you may be spending a lot of time with these people. Be considerate, be kind.

Step 4

As a hockey mom often I’m required to relinquish my calendar, the family’s calendar, to hockey, having the schedule revolve around what practice, game or road trip is next on the agenda. I’m thankful that there is also a hockey dad in the picture so we can divide and conquer but that doesn’t take away the guilt for not being there. The guilt is two-sided; not being at the game or guilt from not being at a family function. I am so happy I only have one hockey player, having two or more must be real tough. I feel for the parent who has to go it all alone, I understand the sacrifices they have made. I have to concede that most of the time I am powerless over the schedule. I have to accept that it is okay, and not selfish, to dream of that day when once again I will have control over the calendar. To dream of the road trip that has nothing to do with hockey.

Step 5

As a hockey mom my role is to provide a little sanity when things feel like they are getting a little insane, to ensure there is balance between the hockey and non-hockey life, to focus on the life lessons, to be the realist and at times (not as often as before) to be the shoulder to cry on (remember she is female the tears will come, the emotions are always there and as explained above sometimes a little more intense than others.)

Step 6

As a hockey mom I can’t take anything personal, if after a practice or game she doesn’t want to talk to me, that’s okay; there will be time for us to have a heart-to-heart later.  Although, I do dread those times when there is a long silent ride leaving the rink.

Step 7

As a hockey mom I need to not lose sight of that person I was before there was hockey. I will be just a mom, first, last and always. I need to remember that the general public will not give a damn of what my daughter does on the ice and they are just going to tune me out if all I can talk about is hockey. I don’t want to be a fanatic. I want to live, feel and enjoy this great big world. I want to have adventures besides hockey but sadly sometimes step 4 gets in the way.  Please keep this in mind if I have to turn you down on an adventure, don’t take it personally.

The bottom line is that even though I didn’t sign up for this program my daughter is a hockey player, she created the hockey mom. With hockey I must practice unconditional love, even though I may not always agree with the demands the sport may require from her, I’ll support her no matter what. Hockey will always be her choice, not mine.

On a good day, I’m loving the adventure.  On a bad day, the countdown clock is ticking to when I no longer have to be a hockey mom.

In the end, I can only hope there will be many fond and sometimes crazy memories of fellow parents and players, and new friends we have made along the way, that we will always share, all because I was a hockey mom. Maybe there should be one more step, as a hockey mom it’s my role to ensure that happens, to put the puck between the pipes, it’s really the only goal that matters. 

The Pink Line

I may of lost a couple of items when my provider switched from  google based mail to something different but at least I did have a backup.  Not sure if photos carried over. This one I know didn't carry over, it was written awhile ago. I've gotten away from blogging/writing but hope to change that in the future.

In a little over a week, Austin and I will be making another trip to Chicago to participate in a couple of research studies. We will be ending the speech and language study we began in May and starting the toolbox study (an app to measure cognition).  Our days of participating in any clinical drug studies ended abruptly when in December 2013 he developed a severe case of Hemolytic Anemia and they had to remove his spleen.  I’m thankful that there have been other studies, not drug related, that we have had the opportunity to participate in now that he is once again healthy, even with no spleen. 

Austin did his first study, on speech and language, over 13 years ago, with the wonderful staff at the Waisman Center at the University of Wisconsin-Madison.  It was a five year study and he learned to travel by planes and taxis, visit unknown locations, stay at hotels and interact with strangers. When we began I told him he would have the opportunity to help others learn more about fragile X which would in turn help others just like him; who would have guessed he likes to make a difference, he likes to contribute.  What he also likes is how the staff make him feel important, how they build his self-esteem. 

Since I’ve participated in a few research studies myself I know how grueling the testing can be. I’ll admit in one such IQ test towards the end of the day I started thinking about how I could shorten a test, i.e.,  a pre-determined number of wrong answers in a row will easily end a section, shorten the testing, testing reminded me of an six hour final exam.

For Austin, early on, he’d naturally bomb out early, but with every year there was growth, there was measurable improvement even if it was slight.  Nevertheless he works very hard and does his best no matter what’s required.

When we travel he loves the one-on-one time he spends with mom. As he has aged we’ve grown our research experience a little not staying isolated within a hotel room or testing facility.  Back in the early research study days I’d try to minimize the unknowns, stick to a routine which included a visit to the pool, renting a movie and eating at the hotel.

In May, with our first part of the speech and language study, we arrived in the late afternoon on Thursday a day before our study activities began. Like a carrot at the end of a stick, to encourage Austin to leave the hotel, I dangled before him a trip to the Disney Store on Michigan Avenue. For me it would be sinful to visit Chicago and not be out and about. Since we were staying close to the “L” by the Willis Tower I knew this would be no small adventure.  We opted for the hotel by the “L” because I wanted to avoid the extreme parking fees downtown and simply parked at Rush University/Medical Center since it’s a block from the Pink Line.

The carrot worked well, we took the Orange line to get us a little closer to Michigan Avenue and did a lot of walking. It was an interesting walk since he identified all the different logos he recognized and often told me while we were walking arm-in-arm that he would protect me. Now that could have been a little of his anxiety sneaking through or just his instructions from Dad, “Take good care of Mom, be good for her.” It was quite the adventure with a stop for dinner on the way back, we were wandering around Chi Town for over three hours before we hopped back on The Pink Line to head back to our hotel. He did remarkably well.

Friday morning after breakfast at the hotel we hoped back on The Pink Line to head to Rush to begin the study.

Now I’ll get to the nitty gritty about why I called this “The Pink Line”.  Accessing the “L” is not a favorite activity for Austin, lots of open stairs and it takes him time to two foot each one (mom on the other hand could probably go up and down them twice for the amount of time it takes Austin to make one trip up or down).  Now I could use the elevator when available but on the off chance it might not be available I’d rather have him always do the stairs.

To get to Rush from where we were it was a pretty easy ride, maybe only four or five stops. None of those stops were along the Loop. Our trip was not too congested since we were heading out of the downtown area when most of the commuters were heading in.

The biggest bump in the journey was the stop at Polk Street, our exit for Rush.  Austin before exiting noticed a gap between the train and the platform and froze in place.  That’s when I had no choice but to push, and not too gently.  I had visions of us riding on The Pink Line stranded like Tom Hanks in the movie “The Terminal” in what would feel like forever and ever.

In the past weeks I’ve thought a lot about The Pink Line.  The Pink Line is a part of many people’s lives for one reason or another they are stuck, they have defined their limits and let those limits define their life.  Often they have a very negative impact, they take away the wonders and opportunities available each and every day. After all, when you are six feet above ground you’ve been given a gift that should not be wasted.

So if you find someone who is stuck on The Pink Line give them a little push, help them close the gap and take a step forward. Understand their fears, their sorrow, whatever is keeping them trapped but support them in a way that enables them to move past their limits. Sometimes we can push ourselves but sometimes we need a little help from our friends. 

Say Something – Brute Force

I am quite disturbed over the Eric Garner events enough that it’s time to say something. Being a parent of a child, now young adult, with a disability, physical restraint has more than just worried me over the years. To see the videos in which Mr. Garner was clearly in distress, let those restraining him know he could not breathe, is an image I won’t forget for a long time to come.

On more than one occasion I’ve had to advocate on Austin’s behalf on what type of restraint could be used – I permit a transport hold only as a means to move him to an environment in which he can calm and not have a thousand eyes (yes that’s an exaggeration but that’s what it feels like to him) on him all at once. Because of Austin I’ve done a lot of research on the use of physical restraint, much of it stemmed over a meeting in which I was told it was not appropriate to hug my child but it was okay to physically pin my child to the floor using brute force.  In my initial volunteer News-Herald column days this resulted in the “Why did we stop hugging?” column.

The facts still stand - No one has ever died from a hug yet it was deemed inappropriate.  On the other hand far more than one child, one adult, has died because the use of physical restraint has gone very, very wrong.

Yes, I realize that sometimes officers of the law, first responders, are in very difficult situations, their lives can be on the line each and every day; that still doesn’t excuse the excessive use of brute force. And, It doesn’t mean that we can’t do something better, we can’t better train these individuals and prepare these individuals to make appropriate decisions.

Austin is not black, he isn’t profiled, but he is developmentally disabled. Now that he’s over 18 a lot of things have changed and as his mother I’ve got to be realistic about his safety in the community. Yes, I’d love him to be independent but I have to think of the “what if’s”.

The big one is “what if he’s in the community and he has a meltdown?”

• Who would recognize it as a meltdown?
•  Who would recognize that he is developmentally disabled?
• Who would understand the best way to get him back to calm, to keep him and others safe?
• Would he be restrained?
• Would he be tasered?
• Would he be shot?
• Would it be fatal?

I have never wanted to be a helicopter mom but I’ve found that as Austin has aged I’ve probably become more of a helicopter mom. He has fragile X, to the untrained eye he has no physical features that he is disabled. He appears for the most part as a typical young adult male, oddly what many families of individuals strive for an inclusive environment in which they are the same as their peers. Yet being treated the same as his peers in an altercation or a first responder (EMT) situation has the potential for very negative consequences.

There are a few organizations that try to address this such as the Law Enforcement Network, aka L.E.A.N. On Us, to provide first responders with information and resources that will allow them to better serve individuals within their communities affected by hidden disabilities and mental illness but in the big scheme of things the number of departments/cities that actually invest in such training is almost nil.

In the end, I’m only frightened and sad because when it comes to the use of physical restraint, brute force and working with those with disabilities/mental illness I have to ask “How many lives will have to be lost until we do something to change this?”

Too Little Time, Too Many Things to Do

Isn’t that the way it always goes.

Austin has recovered from his injury (broken humerus) nicely, at this time we don’t have any more monthly appointments, next follow-up is in August 2015.  Sadly, I think he’ll feel the weather changes in his arm from this point on but there is not much I can do about that other than to teach him that if it bothers him he needs to tell someone and maybe a little Tylenol or Motrin will help.

He started school off about a week late, was doing well but than our seasonal behavior crept in.  Last year because of his illness and low blood counts behavior wasn’t an issue even though it was his first fall off of our study med STX209.  This year he decided to make up for that and oh how I miss STX209.  The good news is on the autism front they are reviving the study. I still hope that one day, this med, which is based on Baclofen (on the market since 1920 with a very good safety record) will be available to all. The FDA approval process truly needs to be revamped, but it is what it is.

After a couple very serious behavior incidents at school in October I pulled him, reached out to our psych for a medication change and set an appointment to see our favorite Fragile X expert (so I can seek her advice and recommendations – which she would give freely – knowing that she’ll see Austin at least once a year.) As typical when dealing with experts a next day appointment is just not an option. We are set to make the trek to Chicago at the end of February, plenty of time for me to work out the insurance issues. Hopefully they will cover the office visit and I’ll just have to cover the travel.  We will go no matter what.

For the most part, in the home, he is doing well.  The home environment is a little quieter, a little more stable than the school environment. I’m better able to detect the onset of hyperarousal and redirect Austin  If that doesn’t work I have the simple ability to walk away, give him space, let him cycle through it and then have a teaching moment.  After the holidays I’ll determine if this will be Austin’s new routine, home with mom, from this point on.  

His staff and his school has been great, honestly I couldn’t ask for a better support team but in the end, no matter what anyone thinks, I need to do what’s best for Austin, not what others (experts or not) think he should be doing.  What is important is that he is happy, he knows he is loved and his self-esteem.  Self-esteem is something many often miss, some of our leakage from the school behavior problems to home were the result of the remorse he felt after an event. It is as crippling as his anxiety at times and no matter how many times I tell him he is still loved, no one is angry it still creeps in creating a hyperarousal event which only complicates things.

I have still encountered those Dr. Jekyll and Mr. Hyde moments which are much easier to detect and control in the home environment, which I fear in the school environment would only result in full meltdowns so right now I’m leaning towards home being the best fit for Austin.

I’ve got a very good reason for being an absent blogger of late, good old fashioned hard work. Although I said I wasn’t going to do it I jumped into painting the basement (honestly there are days I feel too old for this stuff), the most neglected area of the entire house.

I had a little fun with colors. Who wants a boring gray floor when today there are so many other options available? The Laundry Room area the color was truly picked based on the name “Mysterious” isn’t that fitting of an area in which socks seem to mysteriously disappear. While I was waiting for different sections of the floor to dry I felt like painting so I tackled the side door entry/landing which leads into the kitchen and basement.  I knew I wanted to neutralize the colors (the old was a fun blue and burgundy, with a little added details with stenciling). The main color pick was once again solely based on a name “Salem Tan” warm memories of a couple of trips out east with Genevieve for hockey.Still did a little detail and went with a blue for a trim (the color I went for turned out to be a little different from that silly little sample card but it’s still something I can live with). 

I have a major pet peeve with paints, just another mystery.  Why is it that two quarts of paint cost more than a gallon?

When I branched out of the laundry room, to the sitting/folding area I knew I was going to go with some sort of a tan (to pick-up the little bit of tan in the area rug and to blend with the side door entry/landing I went with “Santa Fe Trail” another tan, another name based on a place I’ve visited – a trip with fond memories, '98 the last trip without children (well Gen was on the way). 

I would have loved it if Jerry would have jumped in to do his work room, a handyman’s cave, but I’ve never seen that man paint anything (inside the house) during the years we’ve been together.  I was very tempted to use a wild color, “Fancy Pants Purple” or “Tickle me Pink” were the top two choices but knowing I'd have to live with the final choice I just continued on with “Santa Fe Trail”.  In the handyman’s cave though I’ve left all the moving of the heavy equipment up to him, I still have one little section to finish.

We’ve also jumped in to our Kitchen update.  About 23 years ago when we removed the upper paneling on the walls I was distraught over the condition of the walls under the paneling (did you know way, way back hot water tanks were in the kitchen, I have evidence with a big old exhaust hole for the tank in the kitchen wall, my home was built in 1925) so we just did full paneling in a faux wallpaper.  It worked for years but I wanted to restore the walls.  The faux wallpaper was actually done twice, Jerry did it once and once it was done by a contractor when silly me forgot I was sterilizing nipples in a small pan on the stove – you wouldn’t believe how much smoke damage six little nipples created.  The bad part is both times construction adhesive was used – that created a lot more damage to my wet plaster walls.  Now we’re going to use a great wet wall plaster expert to repair the walls, it’s gonna cost a little but I will be so happy when they are back to their natural state. 

At least in this project we are thinking ahead.  Our fridge size has been limited by an arch in the fridge cubbyhole (lots of dead space above) so I put my handyman (aka Jerry) to work, he busted out the arch while I was his tool time and cleanup girl. New fridge will be delivered in about a week. We are also bringing in an electrician to bring some of the electrical outlets up to code (they need to be GFI), adding two outlets and moving (slightly) two outlets before the walls are refinished.  Electrical work will start in about a week, should be done well before Christmas but it’s looking like the walls will have to wait until after Christmas. I’ll have them done when it’s just me and Austin who are home, possibly getting Austin out of the house when most of the work is done – it would be just too much chaos if we were all home or between the holidays.  

The last couple of steps will be the flooring and I’m going to update the kitchen chairs.  I thought about doing the table as well but my table is truly in excellent condition (even though it’s older than Austin) so I think I’m just going to refinish the base/legs.

And, in reality, the work won’t stop in the kitchen, with kid’s schedules and expenses there’s been a lot of neglect over the last ten years so my list, my honey do and hire out list is huge J. Maybe a more accurate title would have been “Too Little Time, Too Many Things to Do and Not Enough Money”.Part of that is due to Jerry, I really can't complain too much (although I do swear that I think my husband was raised during the depression - even though he's eight years younger than me and far off that era). But at this point the house is paid for, the girls secondary education is paid for, retirement has a nice nest egg and I'm already thinking about spending my children's inheritence :-). 

I have to say I’ve been really awesome about keeping some of my impulses in check.  The living room furniture really, REALLY, needs to be replaced but I won’t buy new until the kitchen is done and the living room is painted-then I won’t worry about how dirty it could get.  Don’t think I’m going with leather this time, Austin at one time had a habit of sitting on the couch and scratching the arm rests, no longer a pretty sight.. 

Although I must say I have been tempted to buy what I would call “New Disposable Furniture” not anything really expensive and then when all the kids leave the nest I’ll update with something I really like.  Now I sound like my mother, except her schedule wasn’t based on when the kids left, it was based on when the dog died J, poor little Puffy – but she lived a pampered and long life.  She didn’t scratch the arm rests, she licked them, nice and stiff in the end.

Life is good!

Off-Switch

I’ve decided I really need an “Off-Switch”.  Sometimes I just can’t stop my mind from going over and over things.

I’m still re-living the broken arm, it just doesn’t make sense how it happened and when it happened. I’m really beginning to wonder if maybe I missed something in the Go-cart crash that happened just a little over two-weeks before the arm did break.

I know Austin has a very high tolerance of pain which is very frustrating for me.

He had a lot of discomfort, pain and swelling with the groin injury and I wonder could it have masked something else that was wrong?  Could he have had a fracture, hairline or not, that was already there? I’m thinking that might have been possible, we were all so focused on the injury to the family jewels area that maybe I missed the other injury.

I’ve got to let it go but I’m wondering if I need to be a little more diligent when it comes to injuries but how do I do this without becoming an extreme helicopter mom, without driving him nuts (well maybe I should drive him a little nuts as payback for how he’s impacted my sanity J). The other question might be how do I do this with medical staff so they don’t question my sanity?

Not sure if there is a fix. Nobody said motherhood would be easy, there was an expiry date or I would be perfect but damn I wish sometimes that there was a better owner’s manual for Austin. 

Shit Happens

This could not be a more appropriate title for a blog, especially a blog of our adventures.

Just Saturday I was celebrating because Austin had a bowel movement (BM), just a sign we were getting back to normal. In our last surgery for his spleen removal his bowel went to sleep which created a minor problem so I had been anxiously awaiting the first BM.

Well I’m more than over it today, Monday, when I got up this morning and found two brown lumps and dirty pajama shorts on his rug in his room.  They weren’t there at 2 am, so it happened sometime between 2 and 7 am. I do have something to celebrate though, it was pretty much contained to one area.  Years past when we would have the occasional visits from the crap fairy my biggest problem is that he would try to hide it, he’d try to tuck it away in his closet which was even more of a disaster. Keep in mind there is no anger when stuff like this happens, only time there is a little frustration is when he does try to hide it, so today he was actually told “good job” because it happened and was contained on the rug. 

Now that doesn’t mean I take my cleaning and disinfecting lightly, everything, including Austin, was thoroughly cleaned this morning.  Wasn’t on my to-do list but that’s life for us, mom’s to-do list is often modified by others.

I always say if you start your day with crap it can only get better, and today it actually did J.

We got to the hospital for our blood draw a little later than expected but that actually worked out well, we had very little wait time. Austin goes out wearing an old bowling shirt that was Dad’s for a work bowling function, they had mock names sewn on and Austin goes by “Krusty”, as in “Krusty the Clown” from the Simpsons. So Krusty and I navigated through our journey out pretty well with no problems. This was his first trip out since coming home from the hospital, not a very fun journey, and he didn’t have much of a choice when it came to what arm they could use for the blood draw.

I was home only for a short time and I hadn’t even thought of checking the online chart results when I had a call from his hematologist.  That, of course, was a time when my heart dropped just a little – when do you get calls when it’s good news?  Turns out it was good news, hemoglobin went from 11.8 to 13.1 (just shy of the low-end of normal, 13.5), white blood count dropped back to normal range (it was actually quite high after the Go-cart crash) and platelets are running a little on the high side, outside of the normal range. Platelets haven’t been above 630 since February.

Later Austin smiled from ear-to-ear when Mr. Don, an aide in his classroom, stopped by to see him. Gotta love it when school staff make it a priority to take time out of their day, when they are not working, to make Austin feel special!

All this excitement has worn him out a little but he’s still doing better than the day before – who could ask for anything more, I'm pleased.

So for all of you, when “shit happens” just think of me and know you’re not alone.  And remember, just because it happens doesn’t mean it has to ruin your day,that is something you do have control over. So I'll sign off with a "shitty" grin because life even with all this crap ain't that bad. 

Sleep Deprived …

I think that applies to both Prince Austin and I.  I do okay with getting up for the 12:30 and 4:30 am med doses but typically have a hard time falling back to sleep. I can call him a prince because as he deserves to be he is being treated like royalty. Although I am seeing a little more walking around, a little more initiative – instead of me asking what he might need he’s coming to me and asking “Can I have a snack?”

I think we have the pain controlled, no complaints and I’m still only giving the lower dose of Oxycodone, only a couple of times between doses did I have any complaints but the advantage of the lower dose is I can add to it.  No extra doses yesterday.

There is no manual to determine where I go from here, and sadly Austin isn’t really good at relaying if he is in pain or how to rate it, with no complaints I have to assume we’re good.

I was told to give the muscle relaxant twice a day for a few days to prevent possible muscle cramping.  This morning I eliminated the morning dose, I’ll keep the evening dose around for a couple of more evenings and than drop that dose as well.

Depending on how he does today will determine if I start to spread out the Oxycodone dose from every 4 hours to every 6 hours tomorrow.  I was directed to around day five to start spreading the doses of Oxycodone out to six hours, than eight, etc.

Most of the meds are supposed to cause drowsiness but I just don’t see it unless it’s the pseudo affect in me J.

His temp he had the first day we were home is gone, my checks are simple lately, a kiss on the forehead, if he’s cool no worries, if he’s warm then I’ll take his temp.  Still don’t trust these darn digital thermometers with Austin, picked up another simple one and with both thermometers, minutes apart I can get two different reads (I can’t trust him to keep the thermometer under his tongue, and under the arm reads are way off from the under the tongue reads).  I’ve ordered a forehead scan thermometer which will also measure heart rate (that might help me to measure his pain or discomfort – I think I can assume if it’s raised that something is bugging him.)

I had the opportunity to look at some of his labs online the other day from his hospital stay and I can add to my worries that his hemoglobin dropped from 15.2 to 11.8.  I emailed his hematologist and we will do another blood draw next week to monitor it (we were on once a month blood draws, I’m hoping this drop is only a result of his surgery).  We were going to do this on Tuesday but I’ve decided I just can’t wait that long, I’ll take him for a blood draw Monday morning. Praying it will at least be stable or even better that it has gone up.

Genevieve and Dad are in Buffalo for hockey, Natalie’s at work – she should be home shortly and I’m having her bring Austin home a happy meal (life is pretty simple for Austin, a happy meal will make him happy). Once she’s home and settled I’m gonna make a run to find a rinse free shampoo cap, I couldn’t talk Austin into visiting our local salon for a shampoo today and I need to do something.

Life is going on, the world hasn’t stopped, but with sleep deprivation I do think it’s slowed down a little for both Austin and I.