Tag Archives: coping

Just keep swimming. Just keep swimming.

13 Jun



Pedal

Originally uploaded by CleverIndie

Physical Therapy (for me) ended yesterday.

The loss of my only undivided me-time has brought up many things.

Lots of tears.

This was my first break in almost 6 years. I had 18 hours where I wasn’t in charge, out of almost 50’000 on duty and on high alert.

I’m exhausted. I’m angry.

The true colors of some people are really shining through, and not in a good way. Having a not-readily-visible disability and a child with different needs brings out the narcissism in other people. It’s partly the myth of the supercrip. It’s partly their choice to live in denial. It’s a whole lot of their narcissism. If they don’t accept a fact then it doesn’t exist. It’s like “La la la let’s pretend everything is ok and then it is! And if it isn’t lets kick the person when they fall to the ground and then call them negative when they tell us to stop or start to cry! She’s dead from our kicking? She is cured of her disability! Isn’t positive thinking grand!”

Ok. A bit of sarcasm (just a dash, right). But I don’t feel like boring you with back story. And positive thinking is wonderful. It’s the kicking and the holier than thou-isms that I have the problem with. It’s also the living in denial part- ever wonder why disabled folks are often depicted with a chip on their shoulder? The loss of certain abilities eventually (over a variable passage of time) becomes accepted fact, but the bitter pill to swallow is the loss of family and friends and the feeling of being tricked, cheated, resented, and lied to by supposed loved ones who invent their own truth rather than bothering to listen to the one person who has experienced it. Try trusting anyone after people who were once at the very core of your world and your family decide what you can and cannot do, not based on any reality except their own needs, and if you try to explain you get labeled as selfish or lazy or negative. And if you do what you can to help them with their needs it is never enough. Any which way, you wind up being judged rather than accepted.
It’s a losing battle. I feel stupid for even trying to fight it. I have to learn to conserve my energy and to say goodbye to those who cannot see past their own noses.

I’m in that really weepy (ok, sobbing) part of building up to cutting off my hair (not really going to hack it off, yet), blasting “The Warrior”, and moving stompingly forward.

But I’m tired and my body really really hurts.

No support for this broken body.

Fact. Not whining. Not negativity. Just fact.

I’m putting this out into the universe because my voice is hoarse.

Bubbling fountains of exhaustion…

21 Apr

Plumbing/H2O conservation event

I am exhausted from having to spend time (that I should be spending with my child) defending/explaining myself as a parent to other people and managing unreasonable expectations of other people.

I’m thinking of printing up some wallet cards- on one side they will say “My child has ASD. Your ugly, judgmental expression and attitude is making him scream louder.” On the other side they will have a host of facts… There will probably be some snide comment about Rainman and of course something about Autism being a spectrum. Possibly the definition of  spectrum as it seems to evade the people who latch on to Rainman as the diagnostic criteria.

But it’s not just strangers.***

A great piece I read recently for grandparents with a newly diagnosed grandchild with Asperger Syndrome mentioned how to behave if they don’t believe the diagnosis and how to find more information about Asperger’s. It’s a perfect letter, even in it’s very broadness.  I’m amazed on a frequent basis how many people (friends, family, acquaintances***) tend to ignore the diagnoses and trials we have faced in the past 6 years. It’s a type of denial that from afar seems like the most loving, generous acceptance, but from this perspective is just plain ignorance and refusal to accept the reality.  Every article I have read about special needs parenting and grandparenting speaks of mourning the loss of the dreams one had for their imaginary perfect grandchild.

Blech.

I get that it needs to happen for many people and it’s part of the healing/mourning process. But I also think that lots of parents with a special needs kid don’t get the luxury of going from everything is fine to a diagnosis and having time to process any of it.  We are entirely too booked to spend time doing anything other than supporting our kids and most of us don’t just wake up one day and say “Johnny is sort of ‘off’ compared to his peers”, it’s an ongoing and lengthy process.  It’s also incredibly isolating in so many ways.  Grandparents and other relatives*** adjusting to a diagnosis, if they share the information, receive sympathy and support which is wonderful.  As a parent who has been through the wringer, I wish I didn’t feel like dancing around singing “I told you so! I told you so!” in full operatic blast at the people who called us names and labeled us and suggested we improve our parenting skills rather than pursuing a label and help for the broad and invasive symptoms our son was having. I wanted a piece of paper that has his diagnosis, I wanted it framed and a mini laminated one for my wallet. One that says “See, I’m really an awesome parent to the world’s most amazing little boy who happens to have ASD” (It would also have a little *ASD is a neurological condition and not a result of poor parenting or non-corporal discipline” and possibly a genuine, heartfelt “Na-na-na-na. So there. Pfffft.”)

If I could I would enact a law that would make people apologize for the hurt they bestowed upon the exhausted parents, and the child.

I think one way I can make lemonade out of our scary and horrible 20 week ultrasound (we had a bunch of red flags either for Down Syndrome or genetic disorders incompatible with life, turned out to be due to a scheduling error. Yes, my hair did start going gray on the spot) in that it made me examine the expectations for my child.  Alex’s hydrocephalus and initial kidney reflux made me examine the expectaitons once again.  When he was a year old the early intervention case worker asked what our goals- short term and long term- were for Alex.  Nobody wants to go through any of this special needs stuff, but really, understanding one’s expectations and setting goals for your child and for yourself are crucial.  I understand the need for Kubler-ross’s stages in processing these things, but to be blunt: I don’t have time to hold your hand. My kid needs both of my hands 24/7/365. I can steer you toward sources that can help, but frankly I have been on my feet 24/7/365×6 (except for the few months on bedrest when I was called selfish and uncaring because I did not appear at one birthday party) and the only me time I have is the 15 minutes in the shower where I really just lather up and cry so my kid doesn’t have to ever think that the tears are because he is different in so many ways.  They aren’t. They are because I am exhausted and when I have opened up about our trials and tribulations and our triumphs I am told I am too negative or obsessive or I just talk to much and I go on and on (I do. Guess what? Kids with Asperger’s usually have a parent with many traits. Definitely applies here.)

Which brings me to the 2nd most exhausting thing : having to manage other people’s expectations. Those folks living in semi-denial (they seemingly accept your child by ignoring their differences completely- lovely and sweet but it brings a whole new element of feeling like one is living in the twilight zone as they brush everything off and saddle you with a virtual straight jacket while your child gets himself into dangerous situations and they just smile and tell you to stop being paranoid and overprotective as that’s what all boys do.).  They don’t accept the reality, they cannot form any sort of support whatsoever. They can’t even watch your child safely for an hour so you can go to the gyno without holding a puking an infant during the exam or so you can just let go an nap without worrying about every little noise.  Because they, in their denial (for lack of a better term, I also think of denial in many cases is better described as intentional ignorance) can’t possible babysit for your kid because they don’t really see your child in all his/her real, rawness. They see the child they expected, particularly in the case of kids with invisible differences.  They may comment on your parenting as a potential trigger to the child’s differences. Every minute of everyday of my life, since we were trying to conceive, has been dedicated to my son. I would love a day off, or an hour where I don’t have to divide my senses to accomplish tasks and keep him safe.  The reality is that without the attention we have given him, he wouldn’t be in school. He wouldn’t be communicating with any of the other kids in any positive way. He wouldn’t be able to sit and focus on some of his favorite activities.  Explaining that he is not cured and this is a very real thing that requires this much attention and having to defend our decisions as his parents is so exhausting.   The only thing keeping them from accepting our kid is themselves.  Their intentional ignorance (they have as much access to resources as I do, they can ask if they need guidelines or information, but they never have) is based on their expectations.  We are burdened with their expectations, thankfully we aren’t further weighed down with our own as we know better.

When Alex was born we were burdened with the expectations of a relative who expected Alex’s birth and the following months to follow what she had imagined, but no adjustments were made for actual circumstances (high risk, prematurity, c-section, NICU stay, and weak immune system and RSV/flu season quarantine) and who suffered for it?  The handling of those expectations, the intentional ignorance (it was decided that we were paranoid neurotics because we wouldn’t visit with anyone with a cold, flu, or mono or visit hospitals with our preemie. We were listening to the guidelines given to us, and frankly common sense, and passed the information on to family and friends to protect our premature infant), still does damage to Alex and to me and to my husband(and some people have still not bothered to read a single article that would tell them that we were rational and being good parents, not neurotic germaphobe freaks).

We don’t need this extra stress, we have plenty.

So my advice, if a relative(near or far) or friend has a child diagnosed with anything, ask about it.  Do not pretend it is not there and do not pretend it is the end of the world or make light of it.  Please do not base your opinion of our parenting and our child on some other person’s experience.  If you really want to help, if you really want to continue our relationship in this new leg of our personal journey, then don’t say “if there is anything I can do”, the best thing is to just ask about our child, or this new path we are on. Just ask if there is anything you can read to learn more, so you can understand and help when the parents or child need it, even if the help that is being begged of you is as simple as a receptive ear.  Throw your expectations out the door. Even if you have experienced something firsthand, you have not experienced it from my unique perspective, or that of my husband or child, so put those expectations of all of us far, far away.  It can help each and every one of us. It can make our little world, your world, and the world at large, better a more peaceful and enriching place.

So, if you are a parent of a special needs child, or a special needs parent of a non-special needs child, or if you are a special needs parent of a special needs child please speak up! I’d be curious to hear what you have to think.  I’d also love to hear from extended family members (anyone’s family!) who have had a child diagnosed with a neurological/developmental disability and how you have handled it (for better or for worse, it can only serve ot teach, right?)

Big hugs all around…

xo

Bek

***p.s.  This, by far, doesn’t apply to every family member or friend in our lives. I guess it is those squeaky wheels that get the grease (or the can of whoopass, as the case may be).  If you have never even had the slightest thought along the lines of “I knew this would happen” or “It’s because they are isolated freaks” or  if you have never felt slighted because we did not participate in something that was focused on you or anyone outside of our mini- three person tribe,  then this stuff probably does not apply to you…  And you get an extra special thanks. Wish it were more, but yeah, you probably just read this and well: THANKS.  Big hugs.

Alex this week…

5 Feb

Tomorrow marks the end of Alex’s first full week on his new schedule… It is also a week and a half since the playground beatdown.

So, how is he doing?

He didn’t stay in his “old shell”, but definitely regressed into a much nuttier version of himself…. On most days we find ourselves questioning the validity of an ADHD diagnosis as the “H” only shows up in specific stress situations. It has seemed like more of a branch, a facet of his differentness… Not my most favorite facet, but at least the rapid lap-running around the kitchen island, the constant little professor chatter, and the inability to hear us at all, without seeing our faces on the same level, at least those things are a type of communication. So the end of last week and most of this week (so far) have shown us that he is handling the schedule change remarkably well, on one level, but it has also shown us that he has learned to dampen his responses to change on one level, which is a very social thing for him to do…However, we can’t seem to break through to find out what part of the past week and a half is sticking with him…

But we are working on it…

More tomorrow…

Sleep well!

xo

Bek

The Truth Freaking Hurts.

24 Sep

For the past few weeks I’ve been having mega-low energy.  Lower than usual.

Because I haven’t been the most physically active Mama over the past few weeks (or rather less physically active than usual because my energy is low and my muscles aren’t obeying lately) I have been trying to make time for kiddo combined with a little rest…We are trying a more structured afternoon here, so having this sort of Mama and kiddo time of any sort seems to be just what kiddo and I needed…

This week so far I am feeling a little better and actually getting around the house a little easier and even took some new photographs, reorganized some work trays, and plotted some other things I need to do on my calendar…  So, I took a little quiet work with me so I could get something done while I was mildly alert and while boyo was eating his snack, while we both watched a movie…

Half way through the movie, kiddo started rearranging my work tray, as my work wasn’t making a pattern and he needs patterns…. I asked him to please stop and he said he wanted to help me with my work so I wouldn’t have to work so much.

I felt like such an arse.  I haven’t been working that much but I do most of my work when he is getting home from school as the morning is a bizarre game of fatigue just running me down.  I wake up. I get out of bed. I go to the kitchen to make tea.  Before it is ready I have to go sit down on the bed but I barely get there because my limbs are too worn to propel me.  This goes on for a couple of hours. Once the 2 cups of tea and the diet dr. pepper kick in along with my ADD meds, I usually have around 2 hours to do whatever I have to do.  This is going to make me lose my last marble.  I went through similar fatigue in January and I stopped taking on new custom work.   I hope this fades faster as I really do miss being at least mildly productive and I miss the interaction, the dance, that is the custom process….

Anyway, I was talking to kiddo and I asked him if he likes spending movie time with me in the afternoon (his dad is doing the active and more focused work with him) and he said he did.   As it turns out he wants to spend more time with me and doesn’t feel like I have spent time with him.  I get this, I do. I understand it.  The balance is elusive for moms who are healthy.

I asked him if he remembers spending time together when he was a very little guy and he said he did. I asked if we had fun and he told me that we went to the doctor’s office.  He is right, we were in doctor’s offices for his stuff and my stuff, at least twice a week for his first few years.  But that broke my heart.  His most vivid memories of me from his earlier years were in doctor’s offices, and going to sleep at the hospital and waking up with the booboo on my neck.   These things make him very sad. He told me he is worried.  “About what?” I asked. “About you” he replied.  I replied, “that’s funny, I was worrying about you!”…And then I broke down.

I guess somewhere, deep down, I was hoping that maybe he wouldn’t remember.  Or that those things were our normal wouldn’t bother him so much.  But they do.  And they bother me too.

Leaps and bounds….

5 Mar

Just a quickie… Doing research on Alex’s thing… Going to docs appointments… Alex came home today with bruises on his knees and shins.Bruises!I couldn’t be happier!As we pulled into a space at school, this morning,  so I could walk him to his classroom  he pointed (accurately! this is new!) at the big slide. His nemesis.  And announced that the big slide is the one he went down at school the previous day (I assumed he went down the small one- which is still a pretty big accomplishment)  He ran around and fell and got banged up today.  Like the other kids. All of a sudden, and it is sudden-since the weekend- he is doing so many amazing things he didn’t do before…  He is working on self-regulation of the things he does in endless repetition- no prompting or assistance from us- he picks a number on the microwave clock for when he will stop doing whatever he is doing (running around the kitchen island with a pinwheel a million times…I’ve seen him do it until he was so exhausted I had to pick him up off of the kitchen floor and put him in bed…) and then he…. drumroll please…. stops. He STOPS!  He even got a bug bite at school today (although, depending on how you ask him, he was bit by a small mosquito, a tarantula, or a scorpion…. Any which way it’s a teensy little bite- and he wanted a bandaid for it- which he usually freaks out about… He asked for one. )….All of this is so huge and wonderful….I made him a label with the labelmaker that says “Mama loves Alex” and stuck it on the inside of the little fence thing that keeps him from rolling out of bed every night… He sounded it out this afternoon and turned to me and said “You love me”.  and once again I had to explain how silly mama cries when she is happy.(he has never been able to do the whole you/me thing….)Huge. Gigantic leaps.  

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