I’m very aware that I’m not the only one going through this, but I’m only speaking about my experience in this post. This is not meant to be taken as a blanket statement.
As a special needs parent, I have had to make many sacrifices over the past 10 or 11 years. I say this, not as a martyr, but as a means with which to make my point. I’ve given up my career and most of my possessions, as well as my financial security.
All of these and more were given up willingly and without much thought. If I were presented with a chance to go back and change things, I would give them up all over again.
However, there is one area that is very difficult to cope with and that’s the loss of friends and family. By loss, I’m referring to connection we once had and damage occurring to relationships due in part to misunderstanding our actions.
Luckily, for the Lost and Tired family, we have mostly overcome this, however, it wasn’t always this way and it most certainly wasn’t easy.
In my experience, when you become a special needs parent, your whole world changes.
Things that I used to enjoy doing, like, hanging out with friends or get togethers with family, began taking a back burner. This occured not because I suddenly had no desire to spend time with them but rather because my priorities had to shift.
Now, despite how many people took this shift in priorities personally, this had nothing to do with them and it most certainly wasn’t personal.
What happened was that as my wife and I became more in tune with our Autistic children (which was really just Gavin at that point in time), we realized that despite our desire to do something or go somewhere, our kids simply couldn’t handle it most of the time. We understood that it wasn’t fair to put them in a overwhelming situation if it could simply be avoided.
Aside from doing what was best for the boys, there is also an element of selfpreservation. We could keep dealing with the fallout from these overwhelming situations.
In a nutshell, we had to put our kids and their unique needs before our personal wants and needs. Trust me, if we could get away for a little bit and spend time with family or friends….we would.
Over time, people just lost interest or decided our lives were to complicated for them. Saddly, in some cases, we had to walk away ourselves in order to do what was best for our family.
Unfortunately, for many years, people didn’t understand. As I said previously, some people even took it personally, despite our many attempts to explain. In my case, I lost most of my friends and my relationship with my siblings suffered as well.
Everyone said that they understood, but I know they really didn’t and honestly, how could they. We spent so much time and energy hiding our struggles, no one really ever saw what we were experiencing.
For the most part, we were very lucky. Most of our family really tried to understand. However, behind the understanding smiles, grew misunderstanding and even resentment in some cases.
Some people actually thought that we were using our situation to get out of going somewhere or doing something. We have also been accused of using our situation to our advantage by people we made the mistake of trusting and letting into our lives.
No matter what we did to help people understand, nothing seemed to work.
Eventually, after more openly sharing our story on this blog and them reading the thousands of comments, they began to finally understand.
We now enjoy a stable and much more healthy relationship with our family, at least most of them.
I want people to hopefully, understand that they are not alone in this struggle. I would also like to think that perhaps, someone may read this and better understand what is going on with a friend or family member.
The last thing I wanted to do was cut people out of our lives. Unfortunately, in some cases it’s unavoidable. However, I want people to know that there is still hope when it comes to this struggle. Things have improved in this area for us and I never thought it would.
We haven’t compromised anything. We have the same issues with the boys and large gatherings, however, most people are much more understanding and I’m so incredibly grateful for that.
Having said all of the above, I was wondering how many of you have experienced something similar? What, if anything have you been able to do to help resolve these misunderstandings.
Have you ever had to make the painful decision to walk away from some relationships because of this lack of understanding?
I’m hoping we can all learn something from each other here. 🙂
Your story about Losing Friends and Family made me cry. Wow. I have an autistic son and I try to take him to as many places as I can, but public places are difficult. My friends and family are very understanding but I usually end up leaving early and not being very relaxed at other people's houses.
I also wanted to ask you if your wife has tried Malic Acid for her fibromyalgia. A friend of mine started on it and he swears it has made all the difference. I just started but do not know the results yet as it is too soon. I tried cymbalta but the lowest dose made me very sleepy and almost in a "drunk" like state so I had to quit taking it.
I wish you luck on your move. Your neighborhood sounds awful. I do not live in a great neighborhood but at least I do not fear for my life. I am a single mom and work part time but as you know doctor appointments and other challenges make it difficult to work full time.
Take care.
Mrs Westie & I managed to get on the outer with my own parents because while we were in the middle of diagnosis, my father did something really stupid, based on ignorance. I know she will never "get over it", and neither will I.
Unfortunately at a very early point we made a decision: will this relationship improve our ability to help our son, or will it distract us? If it was only going to distract us, well those relationships finished quite a while ago. If I regret anything, it's the time I put into trying to rescue the relationships that came to an end regardless.
My recent post Building communities
I totally get it!!! Here is a link to a recent blog of mine http://glenellyn.patch.com/blog_posts/maintaining…
Yup! We also have lost a few friends and I am sure that there are some family members who just don't get it (there is probably alot of talking behind our backs). I have found that the autism community in general is very supportive and can act almost as a surrogate family when need be. I hate to say it, but those who matter get it, and that's enough for me. I don't have the energy to keep people around who are unsupportive.
My recent post Entry Fifty-Four: I'd Have to Say it Was a Good Day.
Sendz a prayer . You won’t lose me as a friend
Oh, Boy! Relationships.
Yes, I’ve experienced my fair share of isolation and misunderstanding. I’m an Aspie, my two children are Aspies. Turns out, a large portion of my extended family are on the ASD continuum. But it certainly didn’t foster understanding and support.
As a child I was what would now be called high-functioning Aspergers, but severely socially impaired. Did my family support and understand me? No. My parents didn’t have the knowledge of ASD and therefore didn’t have the tools needed- this was 25 years before ASD were diagnosed, other than classic autism in Boys. In my extended family it was a case of : ‘No one had sympathy for them, why should you get any? ‘
‘Suck it up, Buttercup!’
‘You’re just trying to get attention’; You’re too sensitive’; ‘You’re faking’; ‘Get over yourself and stop embarrassing everyone’; ‘Get motivated, you’re not living up to your potential’; ‘control yourself’;
Shall I go on? I survived and grew up.
When my 1st child, my son, was born different, it was a difference I recognised. I didn’t know what it was, but it was ME. I could parent him effectively because I understood him intuitively. His father didn’t understand him and accused me of coddling him. If I left my son in the care of others, things invariably went wrong. People didn’t understand him and I soon left him with no one, not even his father, who hadn’t the patience to understand him, no matter how I tried to teach him what worked. Referrals, therapies, specialists, social services, the end of a marriage when my 2nd (normal?) child was 2 years old, my eldest 5.
My son was the 1st diagnosed, at age 10 (5 years ago). We struggled and struggled for those 1st 10 years. No one wanted to know, even his father. My parents got on board 1st. They recognised Aspergers as the story of our family. Most of the extended family still don’t have a clue.
A year later, my ‘normal’ daughter was diagnosed with Aspergers/Social Anxiety Disorder(normal by comparison to her brother ata similar age). It turns out that many in my family have an anxiety diagnosis, but they don’t talk, don’t share, don’t normalise this condition. They deny. They avoid.
I don’t make friends easily, nor do my children. We are loyal and devoted to the people we do let in. We make great friends, but most people can’t see past the sensitivities, allergies, sound and light issues, the awkward social skills. I have been able to construct an environment that works for my children and I. We allow certain, select people into that environment on a controlled basis, so as not to overload any one of us.
Large family gatherings are almost impossible to attend, unless I can set up ‘breaks’ or ‘outs’ ahead of time; a safe-room to retire to, where we can de-stress. We cope by attending, but sitting in corners and reading quietly, letting others approach us singly.
I ask family to visit in my home, my kids’ native & comfortable environment. I only let visits last a length of time appropriate to our needs.
My kids are 15 and 12 now. They have finally had proper diagnosis and are receiving appropriate therapies. They are learning social skills and good coping mechanisms. They are high functioning, whatever that’s worth!
It gets better. Sort of. We learn to cope. We learn to keep the healthy, supportive relationships and to walk away from the toxic ones- what ever family/friends/society says we ‘should’ do/want/be.
We write our own book of life. An ASD tale.
Oh, Boy! Relationships.
Yes, I've experienced my fair share of isolation and misunderstanding. I'm an Aspie, my children are Aspies. Turns out, a large portion of my extended family are on the ASD continuum. But it certainly didn't foster understanding and support.
As a child I was what would now be called high-functioning Aspergers, but severely socially impaired. Did my family support and understand me? No. My parents didn't have the knowledge of ASD and therefore didn't have the tools needed- this was 25 years before ASD were diagnosed, other than classic autism in Boys. In my extended family it was a case of : 'No one had sympathy for them, why should you get any? '
'Suck it up, Buttercup!'
'You're just trying to get attention'; You're too sensitive'; 'You're faking'; 'Get over yourself and stop embarrassing everyone'; 'Get motivated, you're not living up to your potential'; 'control yourself';
Shall I go on? I survived and grew up.
When my 1st child, my son, was born different, it was a difference I recognised. I didn't know what it was, but it was ME. I could parent him effectively because I understood him intuitively. His father didn't understand him and accused me of coddling him. If I left my son in the care of others, things invariably went wrong. People didn't understand him and I soon left him with no one, not even his father, who hadn't the patience to understand him, no matter how I tried to teach him what worked. Referrals, therapies, specialists, social services, the end of a marriage when my 2nd (normal?) child was 2 years old, my eldest 5.
My son was the 1st diagnosed, at age 10 (5 years ago). We struggled and struggled for those 1st 10 years. No one wanted to know, even his father. My parents got on board 1st. They recognised Aspergers as the story of our family. Most of the extended family still don't have a clue.
A year later, my 'normal' daughter was diagnosed with Aspergers/Social Anxiety Disorder. It turns out that many in my family have an anxiety diagnosis, but they don't talk, don't share, don't normalise this condition. They deny. They avoid.
I don't make friends easily, nor do my children. We are loyal and devoted to the people we do let in. We make great friends, but most people can't see past the sensitivities, allergies, sound and light issues, the awkward social skills. I have been able to construct an environment that works for my children and I. We allow certain, select people into that environment on a controlled basis, so as not to overload any one of us.
Large family gatherings are almost impossible to attend, unless I can set up 'breaks' or 'outs' ahead of time; a safe-room to retire to, where we can de-stress. We cope by attending, but sitting in corners and reading quietly, letting others approach us singly.
I ask family to visit in my home, my kids' native & comfortable environment. I only let visits last a length of time appropriate to our needs.
My kids are 15 and 12 now. They have finally had proper diagnosis and are receiving appropriate therapies. They are learning social skills and good coping mechanisms. They are high functioning, whatever that's worth!
It gets better. Sort of. We learn to cope. We learn to keep the healthy, supportive relationships and to walk away from the toxic ones- what ever family/friends/society says we 'should' do/want/be.
We write our own book of life. An ASD tale.