I apologize in advance for the length of this post. I’ve been wanting to address this for awhile now but was too embarrassed to do so. I also wasn’t sure how to make my point and make sure it came across properly.
When I finally started, the words just kept pouring out.
This is the result.
The last few days, I’ve made reference to something that you are all unaware of. I’ve gone back and forth about whether or not to share this.
My reservation in doing so has been mostly related to already being so overwhelmed. While I truly enjoy writing, it doesn’t flow as easily for me as it used to and things don’t always come out the way I would have liked then to.
At the same time however, I truly believe that if I’m to continue my mission of helping people better understand what life can be like for a special needs family, transparency it vital.
The truth is, being a special needs family doesn’t afford you any special consideration from the rest of the world, or even life for that matter.
Not only does a special needs family have to contend with things that most other families couldn’t even imagine, but we also have to contend with all the things that they could. In other words, life doesn’t stop because you have children with special needs or serious medical and mental health issues.
I’m not suggesting that families like mine should get a free pass but I do think that this is important to note for the purposes of perspective.
Speaking only for myself and my experience, I could literally spend every single minute of every single day simply caring for the physical and emotional needs of my family. The kicker is that even if I could do that, it still wouldn’t come close to meeting their individual needs.
As any parent would, I sacrifice endlessly to try to meet as many of their needs as possible.
These needs are things that are vital to their existence and at times, can quite literally means the difference between life and death.
My goal with this post is not to draw sympathy for my family or the countless others just like us. My purpose is to help raise awareness for what families, like mine, can go through on a daily basis. I want people to understand that life doesn’t stop simply because your child is diagnosed with #Autism or some other health related problem. Life doesn’t care if both parents are around, if one parent is chronically ill or just simply not in the picture.
The only thing that life is concerned with is moving forward. It does so with a bumper sticker stuck its ass that says, “I brake for no one”. If you ever get to read that sticker, it’s because life has already run you over.
To further help you understand what I mean, I’m going to share something with you about my personal life and my family’s struggle.
I haven’t shared this yet and truthfully, I’m nervous to do so.
Having said that, I really want people to understand the kind of complexity that can be present in the lives of a special needs family. Nothing is as it appears on the surface. There is always a story that goes untold or unnoticed because not everyone takes the time to look beneath that surface.
Beneath the surface
As you know, we have quite a bit on our plate. Some would say, more than our fair share.
Our current list of challenges includes the following:
1) Lizze’s failing health and need for the Chronic Pain Rehabilitation Program at the Cleveland Clinic. She’s had the same migraine for over a year now. Her only hope is this intensive, 5 day a week program that costs $10,000/week, not including room and board or transportation to and from Cleveland.
2) Gavin’s everything. There are literally too many things to list, but the most pressing is his continuous decline, neurologically, medically and mentally. Until these are address and he is medically stabilized, he can’t get the residential treatment he needs.
3) Elliott’s emotional health. Elliott is really struggling right now. He’s dealing with severe depression, anxiety and ADHD. Getting him to simply eat anything has become extremely difficult since his recent diagnosis of tree nuts allergies.
4) Emmett, like both Elliott and Lizze are struggling with PTSD, stemming from years of Gavin’s violent outbursts and inappropriate behavior. Emmett is experiencing regression himself and I am constantly working with him to keep this from progressing any further than it already has. He’s losing skills he had previously mastered and that is heartbreaking.
5) Our oldest son, Gavin, was moved out of our house and into his grandparents. The reasons for this basically come down to safety. He had become far to abusive and dangerous to be allowed to coexist with the rest of his family. Living with this decision is frought with guilt and pain. The aftermath however, is still presenting itself. The only consolation is that Gavin is doing pretty well in his new home.
As for myself, I’m currently battling with depression. I’m getting help and on medication but the battle still rages. I’m at the helm 24/7 since Lizze first took ill and she began to lose her health. I have, in many ways, become a single parent. I take Elliott to and from school every day. I drive everyone to all their appointments, most of which are at least 30 minutes away. I also cook, shop and clean.
This is just a small percentage of what my family needs from me, each and every day. It’s like having 3 full time jobs,down from 4 (since Gavin left) and the hours are 24/7, with no time off.
I also have to worry about the everyday life things like household chores, bills, work and ensuring everyone’s survival.
It’s a constant juggling act and a very delicate one at that.. This juggling act cannot absorb much in the way of anything without having it all come crashing down around us.
Having said that, I want to share with you something that I have been privately struggling with, that much of my family isn’t even aware of.
We’re losing our house. We are about 4 months behind and have entered into foreclosure. I have been fighting this for about the last year now. It’s like we make some headway only have the rug pulled out once again. It goes without saying, but this is an indescribable amount of stress.
We’ve been in this house for about 10 years now I think. We moved in during the winter of 2003. We’ve never been well off but as far as the juggling act was concerned, we managed to keep all the balls in the air for 9 of those 10 years, despite all the other challenges in in life. I think that’s pretty darn impressive myself, not that it really matters anymore.
You know, it’s unbelievable how one single event can change the course of someone’s life.
The first domino fell about a year ago with our van being stolen. I was still making payments on some of the recent repair work. Now I had to make make those payments and physically replace our van. It took every dime we had, including our entire tax return to pull that off and we still walked away with a monthly payment on top of the previous repair bills.
We spent a large part of this past summer with Gavin at Akron Children’s Hospital because of his autonomic issues. Driving back and forth and living between the hospital and home is very expensive, even if you can afford it, which we couldn’t.
Eventually, the whole van being stolen thing raised it ugly head again.
With everything going on, I had lost track of the payment schedule I had set up with the repair shop. I wrote out a series of checks and the last one was for $1,200. However, that check was never meant to be cashed. They were going to call me in and we would rip up that check and spread it out further.
That never happened. The shop didn’t have my new number (I swore I gave it to them) and when they couldn’t contact me for awhile, they cashed the check. After all, I owed them the money anyway.
At that point, I was getting ready to make a payment on the house and possibly a second one as well. I just had to wait for my direct deposit to come in. However, about 2 days before that happened, I got a text letting me know my account was overdrawn. I wasn’t to shocked to see that as it wasn’t the first time that’s happened to us, not by a long shot.
When I looked at my account though, I just about lost it. The check for $1,200 I mentioned a minute ago had cleared my account.
At the time, that account only had $2.43 in it. The bank allowed a check to clear my account, that was over 4 months old, that clearly stated it expired after 90 days and from an account with only $2.43 and no overdraft protection.
The repair shop felt horrible and agreed to rip up the check and make new arrangements as soon as the bank bounced it back for insufficient funds. Guess what. The bank refused to return the check due to insufficient funds and I was left high and dry. When my direct deposit hit my account in the amount of about $1,200 they basically canceled each other out. Now I was out a total of $2,400 and have no realistic recourse.
I couldn’t even make payroll for our business and now my last contractor has found a new job and we are having to shut the business down, after almost 13 years.
I have filed an official complaint through my branch manager and I’m waiting to hear from their corporate office.
What really peeves me is that they let the $1,200 check clear the account but then bounce back two $30 checks for insufficient funds, from a different account. Those were going to pay our City Income Tax and the law firm that we used when we were fighting for Gavin.
Obviously, I wasn’t able to make the payments on the house and even missed the
following one as well. We are coming up on our 4th missed payment in about a week or so.
The real kick in the gut is that there is no help. We are on a land contract and so our situation means nothing to the mortgage company. My aunt and uncle are the mortgage holders and can’t get help because they don’t live on the property anymore.
It’s like a serialistic nightmare you can’t wake up from..
Not only do I feel like I failed my family but I know this is impacting two more families as well. That’s very difficult for me live with.
The plan at this point is to try and make it through until tax return arrives,sometime in the first half of February. It’s delayed of course because Congress couldn’t do their job in time. However, hopefully we can get caught up.
The huge downside to having to use tax return is that what we will have to pay to get caught up is going to come out of the money we were setting aside for Lizze to enter the Chronic Pain Rehabilitation Program at the Cleveland Clinic. It’s like robbing Peter to pay Paul only with much bigger more painful consequences.
The other issue is that we are once again losing our entire tax return and won’t have it to live off of for the winter.
Thus the cycle continues…………
Now you know everything. Hopefully have a better understanding of what our lives are like now.
The stress of everything is a large part of why I don’t write as much anymore. Well, that and the fact that the goddamm site is always friggin down. Don’t even get me started on that.
My hope is that knowing what my family is experiencing could help other families to understand that they aren’t alone.
I also would hope that perhaps this could give those outside the special needs community some perspective and insight into how the other half lives.
All we can do is keep fighting to survive. Keep on doing everything that we can for our kids and hope that any light that may at some point appear at the end of the tunnel, isn’t another train speeding towards us, with no intention of stopping.
Gosh, that’s horrible. I will be praying for you guys, Rob. There are special needs scholarships you can apply for that help with the cost of therapies and other educational things for your kids. That’s one thing you can look into. I have heard there are also non profits that provide emergency help to special needs families in need, like financial crisis, etc. I don’t know of any, but will look for some. I am positive you guys would qualify. Keep your chin up.
@rmagliozzi thanks. I really appreciate that. 🙂
I don’t what to say ,Except Hang in there,We are unemployed ,no insurence, ( my husband unemployment and my son’s disability ssi (he has a medical card ) we are not elegable ,unemployment is about to run out ,3 kids at home ,son 21 classic non verbal has aged out of the school system -so one of us has to be at home at all times -we are current on bills -but are borrowing a car that doesn’t fit all of us – the van’s transmisson went out – we were ripped off for more than a thousand dollars and still no working van- washer is broke dishwasher is broke -Wish we wouldn’t of paid the last years mortage can’t sell for what we owe-and the 8,000 would have helped in a new start -we are only childern – parents on both sides are beginning to fail medically -one is about to lose both feet,one is ready to have magor surgery to shoulder and will not be able to care for herself for 12 weeks- the other side- father is in constant pain of neropathy in feet legs and stomach ,diabetic mother has fibro- and they are needing to be moved closer for doctors and us to be able to help and none of them can help with our kids-we have not had a day off in well over a year- in 26 years of marrige we have been away at the most 3 days We love each other and we love our kids but have come to a very hard place our selves – really don’t know what to do- I am telling you this because i sometimes have to acknowledge what we are going through too and to show you – We have made it though 26 years (and we are still here and alive ) So hang in there, and if you would like ,message us Your in our prayers ,and things will work out ,i don’t know how,but it always does ! We are living proof Gloria Crane
@ChrisCrane You are an inspiration for me. I truly mean that. I think I needed to just say everything because going through this alone really sucks. I do my best to handle as much as I can on my own without stressing out Lizze but sometimes it’s just nice to know that you aren’t alone.
I really appreciate you sharing that. I know it’s not easy but at least I’m in good company. 🙂
Thank you again and know that I truly appreciate your struggle and will have you and yours in my thoughts and prayers as well. Hang in there.