Judging a special needs family: A look beneath the surface

This post is dedicated to all those special needs families out there doing the very best they can in a challenging situation. This post is meant to help educate those who are quick to judge.

I want to provide an example of the kind of things that frequently occur to the Lost and Tired family.  These occurrences often, completely disrupt our lives and force us to re-prioritize..  As a result,  many things happen that otherwise wouldn’t. Chores don’t get done and bills don’t get paid -just as an example-.

I feel it’s important that this is understood because there are so many families out there that go through a very similar thing.  The absolute worst feeling is when you know that you are doing everything possible and it’s not enough.

When people don’t understand this or otherwise judge you or your family based on the ignorance of simply not knowing or understanding what a family is actually going through,  it’s beyond demoralizing. 

Trust me when I say that as a special needs parent,  I’m already beating myself up,  because I know that everything I can possibly do will never be enough.  I don’t need anyone else to remind of something that I’m already all to aware of.

This is what happened last night to the Lost and Tired family.  It was unexpected and has completely thrown everything out of balance. I’m hoping that something good can come from our struggles. 

When we first arrived in the ER at Akron Children’s Hospital,  we have to go through a triage of sorts.  They gather information and take his vitals.  They decided where we go from there. In our case,  whether we go to the regular ER or the Behavioral Health ER.

We were sent to the Behavioral Health side and basically go through another triage process.  I have to mention that the staff is really friendly and supportive.

A tech comes into the room and explains the process to us. Unfortunately, we have had to do this enough that they already know who we are. We were asked some basic questions and had a chance to ask some of our own. I explained why we were here and that we need to make sure that Gavin doesn’t see this as a vacation. He remembered and was very supportive, which is very helpful.

The next step is meeting with the ER doctor for a medical exam. They get a detailed history and access him for any immediate life threats and get him medically cleared in the event he is admitted to the psychiatric unit.

Once that happens,  you meet with the counselor.  This is were we struggled the first time.  They interview everyone separately.  In our case,  they met with Gavin alone and then met with Lizze and I. During this time,  a more detailed history is collected,  particularly the events that lead to us bring him in. Once the interview is done, options are layed out, discussed and a plan is made.

In our case,  Akron Children’s Hospital had no open beds.  Our two options were to possibly have him placed in a psychiatric hospital in Youngstown -assuming they had open beds- or bring him home.

The counselor took a great deal of time talking with us and helping us make the right decision, both for us and for Gavin.

In the end,  we opted to bring him home.  There were a few reasons for that decision but basically,  they had already ruled out any life threatening conditions and said, we needed to get Gavin into his psychiatrist ASAP.

Hospitalizing him at this point would likely only serve as a deterant and the chances of it working were slim to none. Gavin was actually excited to go and viewed it in a positive,  fun way. He was excited about the food and so, much like the last time, there isn’t really a point.

The other reason is that we simply couldn’t afford to make the trips to Youngstown. It’s about 1.5 hours away and we would likely be driving back and forth several times.  Gas prices are about $4.00/gal and whether or not we want to admit it, that is a very real thing we have to consider. It’s a very ugly truth but a truth nonetheless.

They also didn’t want to adjust Gavin’s medications because they don’t have a long term relationship with him and he’s so complex that it is best to leave it to Dr.  Reynolds.  We agreed that was best and the decision to bring Gavin back home was made.

It’s not that we don’t want him home, it’s that we have to ensure everyone’s safety.  That includes protecting Gavin from himself.

To say that the experience of having to make decisions like this is gut wrenching and heartbreaking,  would be akin to calling the Amazon River just a creek.  Nothing in my life has ever prepared me for having to make choices like this…nothing.

People can be quick to criticize how poorly we keep up with, what I consider expendable things.  Our yard isn’t as well maintained as my neighbors.  Our bills go unpaid and we’re behind on our mortgage.  The house is almost always in a state of disarray.

From the outside looking in, maybe it’s easy to judge me or my family based solely on how this look to the naked eye. However, there is simply no instruction book that comes with special needs kids,  trust me.  We aren’t irresponsible or lazy.  No matter how hard I work or how much my wife and I plan for the future,  something always comes up.  I get up each morning with every intention of accomplishing the many, long overdue items on my to-do list.. Things like dishes,  laundry, mowing the lawn or basic house repairs.

Instead,  I spend my time putting out fires and moving from one appointment to the next.

The thing about special needs parenting is that my to-do list is more of a luxury that I simply cannot afford. Ours lives are like a constantly shuffling deck of cards.  The cards are constantly being shifted around so you can’t plan or predict anything. Put simply,  we live at the mercy of the hand we are dealt and it’s typically a loosing hand.

This is something that I just can’t overstate.  Speaking for the Lost and Tired family only, control over our lives always seem elusive and just out of reach.  Why do I share this?  I share this because I know that the Lost and Tired family has not cornered the market on this kind of struggle.  While we may have more than our fair share,  there are many other families out there going through a similar struggle.

I think that as #Autism Aware message month is upon us,  this is something that needs to be highlighted.

All to often,  families like mine are unfairly judged based on what people see from the outside.  Sometimes those people are the ones that you would like to think could understand. The truth is, that if people only took the time to see what was going on beneath the surface,  they would see the truth.  They would see that the special needs parent is not lazy or irresponsible.  Instead, they would understand that they are dedicated to caring for the unique and ever changing special needs of their beautiful child(ren).  It’s beyond a full time job and literally takes up all available time,  energy and resources.

Please keep this in mind before making snap judgements.  Maybe you could use that time and energy more wisely and instead of judgement,  perhaps offer understanding, compassion and support.

 

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Anonymous

If you agree that it is difficult to understand what’s under the hood of a family dealing with this condition, it would likely help the rest of us unknowing outsiders if you could get pro active in educating us. Somehow – at least for me – the lack of awareness of this condition is all that is ever stated. Never are we pro actively told what you are dealing with. After years of flat rejection of any of our offers to help ( and how the hell are we expected to come over when we are never invited?), even those if us willing to try will eventually give up.

We don’t know what you are facing, and if you do not tell us plainly we will never understand because you are the only ones that can help us help you. There are likely only a few of us who live closely enough, have kids the same age, and are related to you to not focus the bulk of your support-gathering efforts on our understanding. If you find yourself with relatives or friends who judge but don’t help, ask yourself if you have informed us of exactly what you are facing, or have you instead visited with us, not informed us in detail ahead of time, created a situation of likely failure, and then judged us forever based on our initial reaction.

Apply some understanding and flexibility to us so we can do the same. Don’t, and you run the risk of losing for your child the few people that could actually make a huge difference in the life of your child, and maybe even you.

Guest

For now we are going through a stable period and it is fabulous!  I get a glimpse of what other people get to live like without the constant crisis. So I got some of the clutter areas of my house cleaned up.  My mom, who is an OCD house cleaner of the first water but super sweet, was very complimentary of my progress.  I pointed out to her that my home had never been cluttered or dirty before I had kids. That I don’t live in a mess because I want to. It’s hard when you have an out of control child that shreds mattresses, puts holes in sheets, pulls wallpaper off the wall. And that’s the easy stuff because it doesn’t hurt anyone. I saw a light go “ding ding” in her eyes when I said that. I think that on some level she thought that I was OK with the disorganization of my life.  But the reality is that I have to make hard choices about how I spend my time and if it is a choice between safety and organization, safety wins.  What I have learned from this is that if I see someone who is struggling – I either need to help or be supportive.  People aren’t struggling- whether it’s struggling to have a good attitude at the drive through or struggling keeping the yard cleaned up- because they want to (usually). Something is going on.  I can at least be kind about it  and not be judgemental even if I can’t do anything direct to help.

lostandtired

@Guest that’s was absolutely perfectly said. That was so well said. That k you for sharing your insight and experience. 🙂

Kaitlin

Simply perfectly stated. I'm sorry for your struggles. Our family will be thinking of you. But thank you for sharing this message and being a voice for all of us.
My recent post The Words We All Wait to Hear

Denise

I like to think people don't judge negatively, but I guess I'm dreaming, eh? =/ Many good insightful thoughts here — real life for sure.
My recent post Thirteenth & Fourteenth Stations w/Meditations: "We do Not Belong to Ourselves…" Gal 2:20

Dede

I too live in a lost and tired family. I guess it is very difficult for people to see into our lives. I wish some of them could come visit and see for themselves. Maybe they would understand why I cannot go to work….. Because my son can’t go to after school care and yes, i know i have 3 college degrees that I worked very hard for and wish I could use again. I would love to be able to pay my bills and mortgage on time. However, i will not give up the chance to heal my son’s vaccine damaged body.

Skhmkt

Don't stress it and don't worry about what others think. Those who know will understand and those who don't need to try and help. Check with your local Arc or Autism Society chapter for volunteers. Where I live there are people who volunteer to help out with household chores such as lawn care and stuff for one day just as a relief measure. Also, there should be some church groups or even college students that can use the volunteer hours. If you want help locating some of those resources send me an email and I will gladly take the time to get anything I can find.

Silachan

If I ever somehow end up in the same area as you, I'd love to help take a day and clean up for you guys. You all need some kind of a break, even if it's just someone else to come and tidy up so that's one less thing to worry about.

You guys are awesome, anyone who judges based on stupid things like that are dumb and aren't worth worrying over.

Lost_and_Tired

Thanks a lot for your support 🙂 I wish people could see beneath the surface because there are so many families like mine that go through very similar things. Special needs families need compassion and understanding.

Your awesome as well 🙂

Bonnie Stewart

You don't need to worry about your house being in disarray. What I can see in your pictures and videos is a nice place, attractive and home-like. Besides your writing on the blog is always top-quality. I'm sure anyone who writes so well tends to be a bit of a perfectionist. I respect anyone who can put that aside for the sake of their family.

Lost_and_Tired

Very well said Bonnie. I want to call attention to this kind of thing because it happens to some many and special needs families already have enough on their plates.

I agree 100% about respecting those that put their kids first. 🙂

Lost_and_Tired

While I\’m not a perfectionist, I do like or at least prefer some sort of order. However, I have learned to accept that it\’s a losing battle. Bigger fish to fry. Doesn\’t mean I would love a better organized environment. 🙂 If you asked my wife though, she would likely say I\’m a perfectionist. 🙂

Kathryn

I think that unless you've walked in someone else's shoes, you can not possibly judge them. Will pray that Gavin continues to level off and that you find some answers for him. It's sounds like you are doing everything you can for him and your other 2 boys, those are THE most important things, not dishes or bills or yard work. You and Lizzie sound like wonderful, caring parents, and they are lucky to have both of you!

Lost_and_Tired

Thanks for your kind words. I appreciate it 🙂

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