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. 

The Chronicles of Austin

It’s been a challenging month, not just Austin related.

We had the trip to the ER for his Go-cart Crash, then his crown fell off, which luckily I discovered and the dentist was able to fix, next it was the bat in the house, followed the next day by the epic flood (which many in Metro Detroit had to deal with) and it was capped off a week later, August 17, when Austin broke his arm. In the first 21 years of his life I don’t remember any ER visits, maybe early on there might have been one or two related to an ear infection and children’s Tylenol not controlling the fever but other than that we have never visited the ER.  Since December 2013 we’ve been there four times - hemolytic anemia, allergic reaction to a vaccine, Go-cart Crash and lastly (at least I really hope this is the last time) his broken arm.

On one hand I’m wishing for a magical wardrobe, on another I’m beeotching because at one time I had one, it was called STX209, and because of outdated unrealistic measures to vet out the effectiveness of clinical drugs and no $$$ to carry on it was taken away.

The Sunday night episode started when Austin’s TV was not working. What was our first mistake? Maybe it was mom and dad both in the room with Austin present trying to diagnose the problem, maybe that made it worse, now I wish we would have somehow distracted him, got him out of the room and just took care of it but I can’t turn back time. No matter how hard we tried to reassure him that it was NOT his fault, that it was okay, that we had another TV (thankfully that was up high in the basement and not affected by the flood) he became more and more hyper aroused.  I took myself out of the picture because the last thing he needed was two of us with eyes on him and more verbalization. Dad had stood behind him trying to talk him down, holding his left arm at his side and his right arm behind his lower back.

Hyperarousal with a 5’11” 175 lb male can be rough. As much as I’d like to bury it in the sand, never share it with anyone in reality it’s not something to be hidden away, because I know I’m not alone. I feel shame that this could put Austin in a negative light but it is simply a fact of life in our home and I hope it would not prevent someone from seeing all the positives that Austin does bring to our lives.  Yet, on the negative side, on more than one occasion I’ve been scratched, bitten and/or punched in the face not your typical mother/son relationship. It's very easy for me to forgive because when it happens it’s not Austin doing it, I understand it’s the ugly side of fragile X.  Keep in mind fragile X is a spectrum disorder, not all have behavior issues, but sadly with those who do they can be extreme when they occur. The ugly side when on STX209 it was extremely rare and even after STX209, with the puberty years ending it doesn’t happen as often as pre-puberty or puberty years but it does on occasion rear its ugly head. In the state of hyperarousal one with fragile X can have enormous strength and Austin suddenly twisted his body and the bone just snapped. Jerry is filled with remorse, with guilt and like I wondering “what if”. It was simply a freak accident but that doesn’t take away the blame we feel, the wishing we had a do over or maybe would have approached things differently, and in all honesty we don’t know if any of that would have made a difference. 

Yet I still believe in the era of STX209 this would have been something I would have been able to simply talk him down from but with no STX209 words were useless.

When Austin had his Go-cart crash he demonstrated his high tolerance or maybe I should say his inability to understand pain. I would think a typical individual who would feel that moving in a certain direction hurts, how it feels would stop them from the movement but in a hyperarousal state that is non-existent, he is far from typical.

Dad took him right away to the ER, which only confirmed what we thought, he broke his humerus bone. Monday, thankfully, we were able to get in to see the Orthopedic Surgeon, at the Henry Ford Hospital downtown Detroit, who determined surgery was required. I was once again thankful that surgery was scheduled first thing Tuesday morning, we had to be there at 5:45 am and I didn’t have to worry about him trying to sneak food or drinks prior to surgery.

We left his side at 7:45 am and didn’t see him again until 3 pm. A little delay was because to treat the intense pain after surgery we opted for a nerve block so he wouldn’t feel anything in his arm, it lasts for 18-24 hours. To do the nerve block they needed him to wake up from surgery and move his fingers and thumb, just to ensure that the surgery did not impact his nerves.  Also to better manage his pain they allowed us to stay overnight in the hospital for 23 hours of observation. I took the night shift and once again was pleased that we were downtown because I knew he would have a private room and there would be no problem with me spending the night. My only mistake for me was opting just to sleep in the recliner when they would have brought me in a roll-away bed. 

The 23 hours gave us a better idea of his pain when the nerve block started to wear off (which did so early) so we would have the correct meds to treat it when we ended our stay at the hospital. With Austin we’ve taken an aggressive approach trying to ensure he is comfortable. We left the hospital with four more meds to add to the two meds he already takes on a daily basis.  I had to do a chart for what to dose when because one is once every four hours, one is once every eight, two are twice a day and his typical meds are once a day in the morning. Needless to say the alarm is set throughout the night.

He was very happy to return home and he’s got the best non-licensed care staff between mom, Natalie and Genevieve.

Yesterday he spent a lot of time in his room, he was tired and the pain was still kicking him in the butt. Today he’s much better.  Yesterday I probably drove everyone nuts because he had a slight fever (it was just below the number where we would need to contact the on-call hospital staff.) It did come down as time passed, still a little elevated but not near the call number. Since his splenectomy I don’t take any fever lightly, I was almost in panic mode when from two different thermometers I got two very different reads (under the tongue and under the arm). I actually visited my local pharmacy (one mile down the road) to discuss and they told me to trust the digital – which I still don’t entirely trust I might have to upgrade to a more expensive forehead thermometer just to ease my mind. I am truly a victim of the information available on the internet creating worry, I worry about Sepsis since his splenectomy.

Now I need to help him heal and hope and pray he recovers quickly. In time, I hope I’ll be able to put the “blame factor” to rest, sadly I think it will take a lot of time before I stop re-living Sunday night and thinking of the “what ifs” but that’s my burden, not Austin’s.

Adventures in Austin-Land

Tuesday Austin had a fun field trip to Midway Sports.

He loved the bumper cars, played mini-golf (which he said he got two hole in ones) and drove a go cart.

The go cart adventure didn’t turn out well since he crashed. With Austin it’s often difficult to determine if something is really wrong or because of anxiety he’s looking for an escape. The staff noticed no visible injuries, and just like I would have thought, assumed that anxiety kicked into high gear and comments made were just his fight or flight response, he was looking for an escape.

He complained about his side hurting and after inspecting his side (by the staff and later by myself) there was no injury evident.  I would poke him in both sides and when I had no immediate response that something hurt or was sore I just let it go.  In the shower I didn’t notice anything but Austin is responsible for washing his privates and other than giving the family jewels a casual glance I didn’t notice anything out of the ordinary.

On Wednesday morning I did ask him if we needed to see a doctor and he replied “no, I’m okay”. When I picked him up on Wednesday, mid-day, I asked the staff if he had complained at all about his side and one staff member said “Yes, on and off all day”.  Keep in mind it’s still difficult to gage because Austin often follows his complaints with an “I’m okay” or “just kidding”. He never cried and we never had any real indication that he was in severe pain. Still, at that point I had decided I would make an appointment first thing in the morning.

We had a few complaints in the early evening but nothing that made me really concerned.

When I got him into the shower I decided to do a thorough inspection and found high up between his legs, hiding behind his testes there was massive bruising, and it looked bad, bad enough that I decided I couldn’t wait until the next morning for him to see a doctor. Keep in mind Austin’s history, he had a splenectomy in December and I’m still not sure how that will impact his future health and now I often try to err on the side of caution. I hoped to get him into urgent care but I got there at 8:15 p.m. and didn’t know urgent care closes at 8 p.m. so our only option was the ER. Before I left the house I let Austin pack his bag, he packed everything he had with him when he was in the hospital in December, Mickey, Minnie, a power ranger, the touchpad and his Nintendo – I just smiled and let him bring them all along.

I was baffled that he never pointed to his privates as being sore, never touched them but then I remembered a conversation we had just this weekend about socially appropriate behavior. A friend had a sad experience with negative social behavior in public recently and it was an important reminder for me to stay vigilant with Austin about what is socially appropriate, what we can do in public and what we can do in private.  To put it bluntly I reminded him that grabbing himself or touching his penis at any time should only be done in private, this discussion took place on Sunday.  Well come Tuesday mom’s words were still fresh and in a situation that any normal male might have been rolling on the ground holding and grabbing himself in public, I think Austin remembered my words “we never ever touch our self in public, this should only be done in private, in private places like your bedroom or the bathroom”. We also had the other discussion as to who could touch him in the privates, who he could show his penis to, i.e. a doctor. Now this clearly makes since to me, I probably should have asked him to show me what hurts in the bedroom or bathroom, maybe I would have seen the bruising sooner because the other attempts to figure out what was going on were done in the living room and kitchen, all considered public places.

On a side note, July is Fragile X Awareness month, so I created a little more awareness with medical staff who had never heard of fragile X, no surprise to me, I’ve been working on awareness since 1997. As always I had to demonstrate how Austin may just answer how he thinks you want him to answer and if he doesn’t really know what you’re asking he’ll just say anything and not tell you he doesn’t understand what you are asking.  This was quite easy to demonstrate when the nurse asked “Are you in a lot of pain or are you in a little pain? He responded “a little”.  Then I asked “Are you in a little pain or are you in a lot of pain?” He responded “a lot”. So I pointed out to the nurse that we can’t trust his answers, he’ll respond with what he thinks you want to hear or repeat the last of the choices.

I just about died when the nurse asked “Do you feel safe in your home?” and he responded “No”.  Really with the extensive bruising in his privates I was clearly concerned with how the staff might respond, I could visualize a visit from Child Protection Services (or at his age maybe it’s Adult Protection Services) all because Austin didn’t really understand the question being asked. It comes down to defining what does “safe” mean to Austin.  Safe might mean to Austin that Dad isn’t hiding under his bed or in his closet to scare him, or Genevieve, or Natalie, aren’t hiding around a corner just to make him jump and scream like a girl.

Triage went pretty quickly but then we had to wait in the waiting room for a bed to open.  When an entire family came into the waiting room wife, husband, mother-in-law and two young children I was ready to wait in the parking lot.  I still don’t understand what they were thinking bringing young children to wait in an ER waiting room.  Strange family in appearance to put it politely - the mother-in-law was dressed in a Hijab yet the wife dressed like a hooker –what a strange combination. The youngest screamed on and off while the husband was being seen in triage – turns out he was stung by a bee, after triage they just told him to go to the drugstore and buy some Benadryl. Reminds me of Austin’s dilemma with “safe”, what one person considers an emergency another doesn’t.

Our adventures didn’t end there. I truly wonder about the purpose of HIPAA and how often it is violated in an ER, why does it even exist?  We overheard numerous results of pregnancy tests, STD tests and the use of the Contraceptive “Plan B” along with some detailed family history. Through it all Austin was paying attention. Oh my goodness, I was between dying of embarrassment and bursting out in laughter when he did ask me what is a STD; what is Plan B, LOL.  I whispered quietly that we’d talk about it later and please use a quiet voice, a library voice, because people here are sick and they are trying to sleep and get better.

They did some blood work, gave him an IV, added a little morphine (his blood pressure is always a solid indication if he could be in pain, if it’s elevated it means he typically is) and had a CAT scan with contrast.

The blood work showed that most counts were normal but his white blood count was elevated, the doctor said that might only be a result of his body trying to repair and recoup from the injury. Thankfully the CAT scan showed no internal bleeding, just swelling in the bruised area. We were discharged and will follow-up with his primary care physician next week.

He’s home today, I wanted to give him a little time to be quiet and be not so active, give his body time to heal. And of course, it’s all thumbs up according to Austin, he says he’s okay. And, if he’s okay, I’m okayJ.

Vacation

Vacation week is over and for me it didn’t really feel like a vacation just a change of scenery at the lake.  That’s the downfall of not working, there doesn’t seem like there is a vacation. Once I returned from the lake there has been a lot to full-fil my OCD tendencies, trying to get everything back in order from the kitchen counter top and back splash demo. No time to blog/write. And now I need to take the next step, can I save the old wet plaster walls – that’s gonna create a lot of dust no matter what we do save them or replace them with dry wall.

Austin’s numbers from his now monthly draw look good, hemoglobin is at 15.2 (last one was 15.3), that is the true purpose of this entry just to do an Austin update.  He started his summer program with VIP this week so he’s busy and very excited about going to Turtle Cove tomorrow (boy I give the lovely folks at VIP a lot of kudos, a water park field trip with children and young adults with various disabilities, they are so awesome).

Maybe when I get everything caught up (LMAO) and the FXAM Quarterly Newsletter done I’ll do a serious blog J This is really rather funny because once I get this all done it will be time to prepare for Genevieve's hockey trip to Boston - now that might be a little vacation time for Gen and I. 

Jon and Owen came up for a visit on Monday and Tuesday

Just like his dad, he loves to fish!

Monday evening Jon, Owen and Genevieve took the pontoon out fishing. 

The summer place, if I count the time my parents owned their place (just across the road from mine) when I was young, next year I will have spent 50 years at Vinings Trailer Park - my goodness I must be old

Is Summer Vacation an Oxymoron?

ox·y·mo·ron noun \ˌäk-sē-ˈmȯr-ˌän\

a combination of contradictory or incongruous words (as cruel kindness); broadly :  something (as a concept) that is made up of contradictory or incongruous elements

I’m not sure about you but lately I don’t feel like I’ve been on vacation, the summer has been very busy, long days of working hard and a few days (or should I say hours) of playing hard. Since I quit working in 2001 it’s often felt like I’ve not only lost my house cleaning team but I lost vacation days and paid holidaysJ.

I know it’s been sometime since I’ve done an Austin update so before time gets away from me again I thought I’d do a quick update. Really not working is not boring there are still a few days when it feels like there is never enough hours in the day to accomplish all that I want to do. And through it all I don't try to live my life through my computer and phone, there is so much more to life than emails, texts, facebook, twitter and all that other stuff that has little impact on those around you, which in the end only takes me away from the present and building those future memories.  

We had our appointment in Mid-June with Hematology, all numbers in his CBC w/differentials look good. Knock on would – we haven’t seen any of the complications associated with a splenectomy. As of our appointment we only have to have blood draws once a month now, next one will be July 8, just one more thing to put on the big calendar of life to make sure I don’t lose track of when the last one was done and when the next one is due.  When it was once a week I didn’t have any problems remembering.

Remember I am a “senior in training” so I’ve got these little quirks occasionally when I’ll walk upstairs and forget what I went up there for, walk all the way back down and then remember what I was going to do.  I call this “senior exercise” when you have a two story house with a basement.

I’m starting to plan Gen’s next hockey trip, in less than a month we will be in Boston for another tournament, we are both looking forward to this trip, we had so much fun last year, and for me it’s a great break from routine in the middle of summer.  Then I looked ahead to August and was surprised that driving to Vermont isn’t really much further than Boston (as long as we hit the Toronto area at the right time as we cut across Canada), and after making those two trips Stoney Creek – Ontario, Cleveland – Ohio and Ottawa – Ontario (two tournaments in September and Ottawa is the first one in October) should feel like a walk in the park.  I’ll cover as much as the fair weather traveling as I can and I’ll leave Jer with the snow storms.

And now it’s 9:40 p.m. and as a “senior-in-training” I think I’m going to call it day. Even though I don’t have to get up early sometimes I’m wide awake and ready to go at 6 a.m. I think that comes with age too.  You’ll really know I’m getting this down pat if I make Gen go to dinner at 4 p.m. in our travelsJ.  I figure in a little over three years when I turn 60 I should have this down pat

Good thing “Hair is for dying, and Life is for Living” 

Don’t sweat the small stuff

Self-talk often helps, so when you see me wandering around just talking to myself don’t judge me, I’m just trying to keep my sanity.

I’ve been in this old house for a very long time and in the beginning we had made some improvements and then all of a sudden it’s felt liked we’ve stalled, for years.  Naturally, we’ll blame it on the kids and my hubby has also blamed it on me (I was the one who decided to quit working in 2001 and I still have no regrets about that decision although I do miss my cleaning crew quite often J) and I’ll blame it on Jer, he’s always saving for retirement, I swear he wasn’t born in ’65 but he must have lived through the great depression, he doesn’t like to carry any debt, he’s a cash man.

So we’ve started changes, and we have planned some big changes into the next year (roof - again 20 years passes pretty quick and new siding.)

We are starting in the kitchen since I still have the same old Formica counter top that was in the house when I first moved in – it’s time. 

Updates were done in the 90’s and 00’s in the Kitchen (but like I said 20 years passes very quickly), Jerry can be quite handy when he has the time, I love the custom cabinets he built, and I love when he re-did the window and door trims, but when whoops (aka Genevieve) came along it seems like everything stalled (I didn’t realize child #4 would have such an impact.)

Years ago faux wall paper paneling was put up in the kitchen (actually twice in one year because I burnt the nipples – baby bottle nipples – boiling them in a small pan when I got a little distracted and the water evaporated – amazing how six little nipples could cause so much smoke damage). I plan to have the paneling removed and I had hoped to restore the wet plaster walls. 

To prep for the new countertop and back-splash Jer has removed some of the paneling and my heart sank just a little, construction adhesive was used, I’m not sure if we’ll be able to save and refinish the wet plaster (I will call in the experts and then I’ll need to determine if we save or if we gut and just replace with drywall).

The difficult part in all of this for me will probably be the passing of time from start to finish. Countertop, Sink, back-splash first, then the wall demo and repair and lastly I’ll move to the floor. The last time I did the floor I did all the demo and prep work for the new floor, was surprised when I removed the linoleum to find much older floor material probably from the 50’s and of course under that was the old hardwood.

That was back in the days when I had a lot of energy, 20+ years also has had an impact on my energy level.  And I chuckle every time I hear Jerry say how sometimes things seem so much more difficult or intense to accomplish, how he feels it so much more the next day. Then, of course, I remind him you’re preaching to the choir, I am 8 years your senior, just wait until you’re my age J.

Right now I just need to keep my OCD in check, to remove some of the paneling Jer removed some of the cupboard doors, honestly it’s driving me nuts every time I’m in the kitchen because I want to close the doors.  Self-talk isn’t helping.  I actually think I’m going to have him put the upper doors back on and if he won’t, I’ll do it.  I’ll have to continue with the self-talk, deep breath, eventually it will be done, the master plan will all work out and in the end I’ll be happy. I’m happy already that I’ve got Jer spending a little J. 

Funny story about the new sink, I picked one out I liked at Menards, Jer found the same sink online but cheaper, we ordered – didn’t know the seller was going through a third-party, third-party shipped the wrong sink, low-end.  When we contacted the seller they discovered that the third-party changed their inventory without notifying them and they gave us a full refund and told us to keep the sink (which I’m not going to use, not sure what we’ll do with it yet). Now that’s customer service.  Honestly, I would have been very happy if they would have just gave us the credit and sent us a return shipping label.  So I have a double-sink, looking for a new home at a much discounted price.

But for now, I’ll just keep taking those deep breaths, it will pass, the end will come – at least for this project until it will be time to start another. 

Please close the cupboard doors :-), you can see all the construction adhesive on the walls under the paneling.

Jer, years ago refinished the door and replaced the trim, this will stay. 

Number One reason for the wall demo, there is just dead space above the fridge, I want to open it up some, also I don't want to be limited on the height of the fridge.  

For the most part the cupboards have held up well, after all they are Jerry Built, who would expect anything else.

I love the detail Jerry put into the replacement trim, if only he had time to do more window trim in the house, the honey do list could be huge. 

Missed Turns

What’s one of my favorite things about traveling with Genevieve to unknown cities for hockey tournaments – it’s the missed or wrong turns.

Even with maps and Tom-Toms (GPS) I am sure of one thing on every trip we take together; there will be at least one missed turn, at least one time in which we will make a loop-de-loop as I call it.

Our journey to Brampton was pretty low-key, we arrived at the hotel with no problems.  It was almost eight in the evening and we still hadn’t ate dinner. She wanted to go somewhere where she could watch the hockey game (go figure) and picked Kelseys as her top choice.  I didn’t plug it into the Tom-Tom, I had done a quick search on yahoo.ca before we left and the directions seemed simple enough.  With a quick glance I thought the step-by-step directions would be all I needed so I only printed the steps (trying to be green and not waste paper or printer-ink.)

After two right turns, as listed on the directions, the directions (while driving) just didn’t make sense to me. I thought the restaurant was much closer, so I pulled off into a strip mall area and plugged the address into the Tom-Tom which still sent us in the same direction we were heading. 

The next right turn we started laughing because we ended up on the same major road we had taken off the highway to go to the hotel, with bumper-to-bumper traffic we realized we had just done a huge circle. And then we laughed even more when we thought of WWDD (What Would Dad Do) he would have been cursing a blue streak by now.  It ended up the restaurant was only about a block-and-a-half from our hotel.  Through this adventure we discovered/realized that from numerous streets in the Toronto suburbs you just can’t do a left turn, on major roads left turns are not frequent, often your only option is to turn right. Left turns are only allowed at major intersections with lights. We laughed even more on the way back to the hotel because what took us 30 minutes to get to our destination only took us a few minutes for the return trip.

We had a few other mishaps during our weekend, a GPS is great for locating a restaurant based on an address but sometimes a little misleading when you can see the restaurant but the address has no entry way from the road you are on, in our book just another reason for a loop-de-loop.

My lesson to Genevieve during this trip was that in life we will make a few wrong turns, a few wrong choices, but that doesn’t mean it’s the end of the world. It doesn’t mean we need to stress out, there is no need to fall apart or meltdown. It just means we need to do a loop-de-loop and follow a different path.  With a few extra turns, a few extra steps we can still arrive at our destination. In life there will always be a few learning curves and they don’t have to be crushing, they don’t have to be negative.  Life in my book is always meant to be an adventure.

As common in many of our trips together, by the end of our stay we got really good at navigating around our little area of Brampton. We mastered the learning curve and found the short-cuts, the side streets to navigate that same journey that took 30 minutes the first night to only take a few minutes in the end.

And, through it all I still chuckle, because if I just would have done it the old-fashioned way, asked for directions from the hotel staff, instead of relying on the GPS or map directions, we might have shortened that first trip right off the bat. There are days I think old-school, no electronics, doesn’t really get the credit it deserves. 

The Straw that Broke the Camel’s Back

“The final difficulty in a series; the last little burden or problem that causes everything to collapse. (From the image of a camel being loaded down with much weight. Finally, at some point, one more straw will be too much and the camel's back will break.)”

Last weekend Jerry and I watched “Last Vegas” and in explaining some of the highlights of the movie Jerry voted his favorite line as being Morgan (Archie) Freeman’s line “"Billy, I have a hemorrhoid that's 32 years old!" – this was his response to learning that Michael (Billy) Douglas's fiancé is only 32”. And we only laughed more when the girls asked “What’s a hemorrhoid?”

This silly conversation brought back a few vivid memories. Yes, memories of hemorrhoids.

When I was 21, in the service stationed in Italy, I was pregnant with my first child which sadly ended in a miscarriage and right after the miscarriage I developed hemorrhoids and was simply informed that hemorrhoids are quite common during pregnancy. This is one very small sample of a little straw that broke my back. At twenty-one I thought roids were only something old people dealt with and in my world they didn’t exist.  I’m sure it’s a conversation my mother won’t forget at least I won’t because I called international and blubbered on the phone for ten minutes to the tune of $70, only to have a conversation with my mom because I had hemorrhoids.  Honestly I was more upset that it happened after the miscarriage, I think if I wouldn’t have had the miscarriage I could have handled the roids.

And now I’m thinking of that straw and reminding myself I’m the one who needs to determine how heavy it should be or even if there will be a straw that breaks the camel’s back.

I’ve got Austin’s last blood draw results always lurking in the back of my mind and I just try to keep it in the back but it is always there.

We’ve had two wetting accidents during the night this week, another conversation one doesn’t typically have when talking about their 22 year-old son but it is what it is, it’s part of my reality. This is not normal so it makes me wonder what’s going on. Do I need to buckle up and get ready for another wild adventure? When dealing with it I thought of the straw that broke the camel’s back. I’ll be honest there are times the simplest thing could be that straw – if I let it. There are times in this journey with Austin, with fragile X and autism, that I’d like to just throw my hands in the air and surrender. But it all comes down to one thing - I’ve decided that’s not who I am, my unconditional love for Austin will move us forward.

And on that note, I’m probably going to drive Ms. Natalie crazy because I’m rocking out to “Love Runs Out” by OneRepublic because this love is never gonna run out.

"I'll be your light, your match, your burning sun,

I'll be the bright, in black that's makin' you run.

And we'll feel alright, and we'll feel alright,

'Cause we'll work it out, yes, we'll work it out.

And we'll start a fire, and we'll shut it down,

'Til the love runs out, 'til the love runs out.

'Til the love runs out."

Love Runs Out - Audio

Word of the day

vig·i·lant

 adjective \ˈvi-jə-lənt\

: carefully noticing problems or signs of danger

Full Definition of VIGILANT

:  alertly watchful especially to avoid danger

Test results are in, numbers look good, and hemoglobin is the same as it was two weeks ago at 15.3 but a new diagnosis/comment appeared on the test results in the RBC Comment area – Acanthocytosis.

“Acanthocytosis is a condition characterized by the presence of abnormally-shaped red blood cells called acanthocytes. Signs and symptoms more commonly reported include a history of chronic diarrhea with pale, foul-smelling, and bulky stools; loss of appetite and vomiting; and slow weight gain and decreased growth. Some individuals may have ataxia, tremors, and visual abnormalities; or jaundice, abdominal pain, pallor, dark urine, and recurrent infections. Although acanthocytosis has been associated with a number of both inherited and acquired conditions, it most commonly occurs with abetalipoproteinemia and hemolytic anemia of severe liver disease. Treatment for acanthocytosis depends on the underlying condition the affected individual has.”

Just another rare disease we'll add to our list. 

I can only remain vigilant; I’ll try to remember to occasionally monitor his urine and stools.  Typical for Austin it’s often difficult to identify if there is something going on.  Even as a young child he quickly learned what to do to possibly avoid doing things he didn’t want to do or as an out to get out of a situation that because of anxiety needed to escape from. An excuse to go to the bathroom or an “I’m gonna get sick” statement was quite common.  At this time I haven’t seen any signs or symptoms but I do believe I might need to be just a little more attentive.

The reference above to hemolytic anemia is just a reminder that even though his numbers look good we may not be out of the woods yet.  I do wonder if we will ever be out of the woods.  As the docs have repeatedly told me there is no crystal ball, they nor I can predict the future.

Next doctor’s appointment is June 16^th unless something drastically changes.

And on another note, I am so over the Spiderman glasses.  Everywhere we go he has them on – now that’s normal, mom being annoyed by how he obsesses over certain things. I've even tried joining him but it's just not working for me - LOL.  I think Natalie wears them best. 

Back to Good ...

It’s almost been five months since Austin’s not been in school; it was sweet to send him back today.

I must admit I had a slight lump in my throat and a knot in my stomach, this felt like such a big step, a big adjustment for both of us.  Austin, like many with autism and fragile X is a creature of routine and he grew quite fond of hanging with mom for the last five months.

He was dressed and ready to go about ten minutes early and did well with the waiting.

We got to the doors a little early and his aide wasn’t out there to greet him but there was no holding him back at this point.  I just asked – “Do you know where to go?” to which he replied “yep”.

My morning began with errands and phone calls, some outside of the normal routine.  I dropped our fee for the ambulance service bill for the breathing treatment (after the pepper spray incident at the school) to the board of ed, they said they’d submit the $100 fee through their insurance.  At home it was once again time to call the Henry Ford Health Systems billing service but not our typical call this time I had to make sure I wasn’t overpaid.  Saturday we received a check because we paid for services that ended up being covered by Hap and Medicaid.  There was no breakdown of what it covered so I only wanted to confirm we weren’t overpaid, that somehow the ER visits in which Hap did cover the co-pays weren’t included – that call went pretty smoothly.

Next I did a little shopping and banking, while packing Austin’s snacks in the morning it was evident that we wouldn’t have enough special treats to get through the week.  When I did arrive home I did what I’ve wanted to do for the last four months, turn the music up and dance J. 

I didn’t realize how much I missed my alone time with music until I had the opportunity today to sing and dance alone in my living room J. Two songs in and the phone rang (thankfully I was in the kitchen, next to the phone and heard it otherwise I might have gone on the “bad mommy list” for ignoring calls from school).  It was the school nurse, right after lunch Austin got a little sick. 

Now, I know Austin pretty well, we do have a little history together. I know what a sensitive gag reflux he has, I know if he eats too fast we will have consequences and I know he will at times try to manipulate us, manipulate situations – maybe just a little.  I’m sure he missed me and after a brief conversation with the nurse and with Austin it was decided he would ride the day out (I always pick him up early so he only had about 1.5 hours to go). 

So mom got back to her music, which was so much fun.  I use Gen’s old iPod in which I have some of her music and mine, when it shuffles it’s always interesting.  I think I covered five decades of music and almost every genre. The shuffle was quite interesting since we’d jump from the 80’s with the Eurythmics, to the 70s with Edwin Starr, to present day with a little S&M from Rhianna and I had a little fun with One Direction too. 

Austin did manage the rest of the day with no problems and as a reward I let him get a happy meal on the way home. The History Channel is once again on the TV and all is well.

Normal is going to feel good, normal I hope will last and “normal” will only be how I decide to define “normal” – it has so very many meanings.  Even the call from the nurse reminded me of normal - it is what it is. Looking forward to tomorrow morning and a few more tunes with the iPod on shuffle let my new and old normal begin again. 

In the nick of time ...

Doctors appointment for Austin today, sadly we got there early (like to be punctual) and had to wait and wait.

Our regular doctor was out but we knew that was coming, we were scheduled with someone else. She had a beautiful 8lb baby boy yesterday and from what I heard they are all doing very well. She is already missed by the staff, Austin and I.   After being there over 1.5 hours I asked if we could just have someone fill out a release form so Austin could go back to school.

He was doing a great job waiting but in situations like this one never knows how long it will stay good. That's life living with one on the autism spectrum, things can change in a blink of an eye.

Thankfully, the head of the department, hematology/oncology, who attended to him while he was in the hospital was available and she saw us instead (bonus - this worked out well for the two patients waiting behind us - shortened there wait, moved them up).

It was a very typical appointment, temp, blood pressure and they told me numbers looked good, typed up our release and in five minutes we were done. Dr. D was very pleased in how well the Rituximab treatments had worked in bringing his numbers back up to the normal range.

It almost feels like years ago when I had to sit down with the girls and tell them about this treatment, when in reality it's only been three months.  I was a little worried about that first round and knew that I couldn't hold back anything on the risks of the treatment with the family - a single treatment could be fatal.  Just six months ago I would have never dreamed that I'd have to have life or death discussions with the girls, explaining that we were in a no win situation, we had to go with the treatment otherwise his condition would have been fatal. On some days it feels like I have aged 100 years and on others, most of the time, I am just so happy we have today.

Blood draws will be every other week now and we can go back in six weeks (instead of four) so they can take his temp, blood pressure and hopefully once again tell us all numbers look good. $30 every time we walk into the office for this routine, makes me cringe a little but what can we do - too bad we can't have e-visits.

Breathing a little easier with each passing day, hoping we stay the course.

Austin was rewarded with a couple of his favorite items for doing so well waiting, a Dew and a small bag of M & Ms. Naturally during the wait I think I heard twice a minute "I'm hungry" :-).

We ended up leaving the hospital just in time. When we got down to the lower self-park area it was starting to fill with smoke.  And, Austin said "Holy Smoke Batman"  :-).  As we were almost out we had to pause to let the police go by.  I'm happy we got out of there when we did because I didn't want the Flex smelling like smoke for months to come.

He's happy to be home and once again the History channel is on the TV - I'm looking forward to 4/28 from 8 am until 1 pm there will be NO History channel on the TV.  The TV won't even be on :-).

Resilient

If it’s one thing my kids are it would have to be resilient and as a mother I think I’ve done the job I needed to do.

Austin’s numbers are good. We see the hematologist tomorrow and I’ll have them write up the release to send him back to school after Easter break.

Gen didn’t get selected this weekend for the hockey team she wanted to make but she’s already moved on. She’s joking and looking forward. Gotta love her sense of humor, she texted the skills coach she works with about Monday’s session and asked “Am I on for Monday or have I been cut from that too? lol”

In our household we look forward not back.  Yesterday is over, it is what it is. Today and tomorrow is a whole different ball game or should I say hockey game.

I only admire Genevieve for putting things in perspective, in reality hockey will only be a very small part of her life. In the big scheme of things ten years from now it’s really not gonna matter what team she played for yet going through these experiences as a fifteen-year-old does matter. She’s demonstrated how irrepressible she is.  No matter what happens in life I’m pretty darn sure she’ll land on her feet.

Shouldn’t we all treat life that way?

Do you want to spend your life always looking back?

If you do so you’ll miss so much today and tomorrow that you’ll never get back and you’ll only have a life filled with regret and time wasted. On that note I’d like to end with the Apache Blessing:

May the sun

bring you energy by day, 

May the moon

softly restore you by night,

May the rain

wash away your worries,

May the breeze

blow new strength into your being.

May you walk

gently through the world and know

its beauty all the days of your life. 

In Your Dreams ...

It’s Monday we’ve done our blood work and I’m anxiously awaiting the results.  Last week was the first week with no steroids, I’m hoping things just level off and we will soon discover what our new normal will be.  

While I was writing this the numbers did come in, all is well, we’ve hit a new high for the hemoglobin, 14.9, I sigh with relief yet my mind still wanders to what next Monday will hold.

Yesterday afternoon Austin had a meltdown which makes me sad, it just came out of nowhere.  I’m thinking something physical might have been going on in his head or body.  I just wish he’d remember if something hurts, if something is wrong, he just needs to tell mom.  Later he told me his head hurt, not sure if it was hurting before or hurting because of how hyperaroused he got.  I’m 90% sure if I was hyperaroused, unable to regulate myself, in full meltdown mode, my head would hurt afterwards too.

Episodes like this are always followed by extreme remorse, he’ll weep and ask forgiveness and sadly he’ll make a promise that I know he’ll never keep “I won’t do it again”.  I know he doesn’t want to ever do it again but it’s not something he can regulate. When he starts to meltdown there are times I can’t redirect it, I just need to let it cycle through, cycle through the rage so we can get to the sorrow. The switch has been flipped and it appears to be on a timer, it has to cycle through.

It’s utterly amazing that through all his illness and all the meds, all the roids, the hospital stays, the treatments at the cancer center for his infusions his behavior was remarkably good. Some things just don’t make sense at all and I have no recourse but to be thankful and feel blessed that he did so well.

Last night I had the strangest dream.  Fragile X and autism can be challenging enough and it ticks me off that it woke me up feeling like I was having a panic attack in the middle of the night

In the dream I was in a auditorium having to pass in front of a few people.  There was a family with a couple of young men with them who had special needs and when I passed in front of the one they grabbed the tendon behind my knee and was twisting it.  I looked at them and said “Please don’t hurt me”, they let go.  I gently stroked his face and told them it was okay.

That’s not what bothered me, what broke my heart was the look on the parents face, a look of hopelessness, a look of sorrow and all I wanted to do was comfort them, to take away their sorrow. To let them know I wasn’t upset with them that I understood, that I have walked in their shoes.

At that point I awoke to a pounding heart, my pulse was racing and I was filled with terror.  Why? Because in reality, behind closed doors that family exists, I know it, I feel it, I’ve lived it and it saddens me that I can’t make it go away. It wasn’t the action of the young man because I realize that they were not in control, what broke my heart was the look on the parents face.

There are things in life we have no control over and there are people who may never get it.  It wasn’t just the hopelessness and sorrow that touched me, it was the look of understanding and compassion in their eyes that broke me down. The sense of relief that somebody understands, somebody cares, that others would not pass judgment.

Last night as I laid there I was angry that my dreams were modeling the part of life I’d like to lay to rest, I’d like to not focus on. Really in my waking hours of the day it’s challenging enough on some days to deal with fragile X and autism, I don’t need to deal with it in my dreams. I want dreams of a calming ocean, I want dreams of flowers, sunshine, friendship and love. If my dreams aren’t going to deliver it I guess it’s critical that I do find it during the course of my day. And with that, I told this tale to the girls this morning and we laughed, that even in my sleep sometimes fragile X and autism really ticks me off, fires me up.

And just maybe I had that dream to remind me to share with others, to let them know I do understand, I have walked in your shoes and no matter what, we are not failures. No matter how battered, physically or emotionally we are at times, we still go on no matter what, we never lose sight of the calming ocean, the flowers, our friends or the sunshine. 

“Courage isn't having the strength to go on - it is going on when you don't have strength." ~ Napoleon Bonaparte