He’s Not Going To Know Me…

I’ve been trying to write this post for weeks, and every time I start I get a couple of lines in and I start crying.
Every time I just think about it I start crying. Ugly, snotty, Claire Danes kind of crying. If I’m driving I can’t see kind of crying.
But I desperately want to write it down…
To get it out of my head…
To begin processing it…
Even the failures to finish the blog post have helped a little though.

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I have spoken before about my daddy darling’s health issues, which started steadily worsening in January 2006, eventually resulting in almost total kidney failure and dialysis. It doesn’t feel like its been that long.
And its more than just diabetes and dialysis – he has numerous issues that affect him physically, making him dizzy and/ or nauseous and weak, making my mommy darling’s life very hard…

So. Down to the nitty gritty of this post.

Some time ago, we started noticing little things. Having to repeat things during a conversation or having to remind him about plans we’d made or things he’d said, and for a long time nobody said anything about it. As if not acknowledging it would make it go away, like a schoolyard bully.

But it didn’t go away.

The bully got meaner.

Then sister C managed to get an appointment for my dad with an Alzheimer’s specialist in JHB. My dad’s diabetes, dialysis and family history are all contributing factors for him and the Alzheimers diagnosis was almost a foregone conclusion.

So that was it. Officially.

The bully had pulled on a pair of brass knuckles.

I think what has frightened me the most is just how fast my dad has deteriorated. Sometimes he forgets to take his meds. Sometimes he gets lost while he’s driving. Sometimes he forgets to eat. Sometimes he forgets where he’s going.
When we see him, or spend time with him, he tells us he’s “Fine!” He works his tail off to come across as himself when he’s in company, but we know.
We see.

It breaks my heart.

Thinking about seeing him one day and him not knowing who I am, or who my son is… Fucking hell.

They Are Not “Clip On” Children…

Back in June 2005, I wrote a blog post titled: No Fairy Tale For Me, Thanx! and in September 2010 (after I was already married) I wrote Something To Think About, mainly to add my voice to a number of posts on the interweb at the time about dating a single mom.
In both posts the same issue got a mention – that I was always, ALWAYS, afraid that my son would be regarded as “not really ours” by any family I married into.
As my knucklehead was almost an adult when I met my husband this was less of an issue for me than it would have been if he was a little boy, but it still worried me.

All three of my siblings and at least three of my cousins are parents to children who were not born to them. I have many friends whose children are parented by someone to whom they were not born, and I have friends who are parents to children they have adopted- for lack of a better word– as their own.

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My generation- born and raised in the seventies and eighties- sees these children simply as “our children”. We love them and parent them, and our children are equal to each other. They are brothers and sisters, cousins, nephews and nieces. They’re included in family portraits and special occasions. All our children’s school concerts, favourite foods, parents’ evenings, achievements and accidents are equally important.

…older generations seem to see these children differently.

It has to be pointed out to many of them that we as parents – and aunts and uncles – are deeply hurt when our children are set apart from their siblings in any way.
I have heard grandparents talk about how a biological grandchild is a little more special to them than his or her siblings because he or she was born into their family and the others were not, and I have seen pictures of these very children excluded from a great-grandparents’ photo galleries…

With very few exceptions this is not done to be spiteful, its simply human nature to separate things that are not the same.

Let me reiterate – the people who speak of these children separately from the ones they are related to by blood, do not do so to be mean. Well, almost never.
For them, these children are “clip on children“, or “not really ours“. They do love them and they include them in celebrations and special occasions, but in their minds they remain separate from their biological family.

If there are children who have become a part of your family rather than being born into it, remember that to the parents of that child or children, they are no different to their siblings or cousins.
However you may think about them, or classify them in your own head, keep it to yourself.

Whether you approve of them or not, they are a part of your family. Please, for your family’s sake, keep that in mind when you speak of them.

The Good, The Bad & The Sucky

The good.
I had a great meeting with a wedding client, my baking went well and I finished on time, and my mommy darling and I got to see The Sound of Music together at Montecasino.
We had a really good meeting with the people at scubaversity about the knucklehead joining their Blue Ocean internship programme.

The bad.
Our car. Its getting worse by the day and driving it makes me so anxious and tense. And replacing it is not an option right now.
It was our last few days with our guide dog puppy Lennox. He goes back to SAGA tomorrow to start his formal guide dog training.

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The sucky.
Mother fuckers broke into our house while we were out on Saturday afternoon. They knew exactly what they were after too.
The rented TV AND its remote, our laptops (including our old machines), spare phones, my jewellery box, Glugsters’s clothes, the knucklehead’s suit and, AND – all three back up hard drives. I am so fucking angry and I can do nothing.
FIVE dogs on the property. FIVE. All fine thank goodness, and the cats are fine, but FIVE dogs didn’t deter them at all.
Mother fucking sons of bitches.
Everytime I think about how much I’ve lost I start crying again. YEARS of work data and THOUSANDS of photographs.

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And then today the guy arrived to see if they could find fingerprints. Which is pretty much a futile exercise since the South African forensic database is nothing like what they have in Europe or the USA.

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It Was Time.

I finally went and saw a shrink.
Its been many years since I was last on any kind of anti-depressant medication, and back then I was a single mom and I had a lot of crap on my plate.

I have normal, “every day” stress just like everyone else. My version of it includes:

  • parenting my adult, special needs son who refuses to acknowledge that he needs any kind of treatment
  • worrying about cash flow (AKA  petrol money and groceries)
  • trying to eat properly
  • procrastinating and making more work for myself
  • procrastinating about seeing to my own ADHD…
  • and…
  • and…

Then late last year there was some serious family kak that caused a rift in my family. My extremely close, any excuse to spend time together family. That rift stresses me beyond comprehension and it contributed to a knot of nervous tension that has not dissipated in months. It reached a point where I was crying all the time – for everything.
Except when I was with my Glugster. He is my happy place, my rock, and he keeps me sane. He cooked and cleaned when I was not able to muster the energy to get out of bed.

So I found a psychiatrist who was nearby (and contracted in) and went to see her. She was not at all happy and she wanted to admit me for a week! On her depression rating I scored a 9 out of 10! We chatted for a while- when I wasn’t bawling- and I like her.
She sent me for blood tests to make sure everything else was as it should be (my hopelessly under-active thyroid is a problem), and she wants me to see a psychologist to talk about things she thinks I need to deal with – like the recent family drama. She also thinks I have not properly dealt with losing Nathan…

She prescribed a month of Nuzak since its something I used before – that worked – but I wanted something that didn’t affect mine and my Glugster’s love life in any way, and many ADs do.

So just after 7am this morning, I swallowed my first Wellbutrin. Apprehensively I must add. I’m sitting now waiting for side effects… She also gave me Xanor to take “if I need it” because stopping the Nuzak may make me feel anxious…

I’m a little nervous but I don’t know if its the lack of Nuzak or the new meds…

On Parenting A Special Needs Child

A while ago, a Facebook friend posted an update that read:

“It’s so easy for a special needs parent to become so wrapped up in advocating for the rights of this tiny community, that their own child fades into the background. I’m constantly aware of how fine that line is.”

Stacey is mom to three little boys, the eldest of whom has De Morsier syndrome, and she is an outspoken advocate for Autism (her blog is here).

Her status really hit home for me and it got me thinking about being a parent to a special needs child, and how I parent my knucklehead.
Many times in our lives, as he and I lived with ADHD and I became more and more determined to create awareness and educate people about the disorder, it became all about me.
How I had to parent a special needs child.
How I had to deal with people’s rudeness and incompetence and crass questions.
How I had to take time off work to get to doctors’ appointments and occupational therapy and shrinks and speech therapy and parent teacher meetings and school conferences.
My son needed far more help to get through every day than I did, but sometimes I was crusading so hard and feeling so sorry for myself that he got left behind.

First of all, let me state very clearly – so there’s no doubt – if your child is diagnosed with ADHD, you are parenting a child with special needs.
ADHD is often called an invisible disorder, and I must be honest – sometimes I am glad for this. If you are a parent to a child with a visible disability or handicap, you are subjected to pitying looks and outright rudeness! Its as if being able to see that someone’s child is different entitles people to ask questions at point blank range.
What’s wrong with your baby/ daughter/ son?
Are you going to fix it surgically?
Was she born that way?
Does he go to a special school?
Oh you MUST try XYZ?
Have you looked into such-and-such a product?
Do people REALLY think that the parents of a child with a disability or handicap of any kind have not ALREADY done – and are doing – as much reading and research as they possibly can?
I get that they just want to help, I just wish they’d think before they speak!

Look at it this way. If you tell someone your child is asthmatic or diabetic- also fairly invisible disorders- people seldom launch into a diatribe about how its a fake disorder created so drug companies can profit. They’re still quick to make suggestions about treatments and tell you of their own experiences, but mostly the show concern and empathy.
If you tell someone your child has been diagnosed with ADHD however, they don’t ask how you’re doing. There’s no empathy. They say things like, “Ooh is she on Ritalin?“, “Well I hope you’re not drugging him!“, and “Oh I was just like him as a child but my parents disciplined me properly.
Do you know that children with an ADHD diagnosis have a worse quality of life than children with asthma or diabetes? They don’t do well at school, they don’t do well with interpersonal relationships, they’re always in trouble, and they blame themselves.

Is it any wonder that sometimes its all ME! ME! ME!

Listen to me! Help me! Show me! Answer me! Anything!
For me, raising a special needs child feels like I am always on the defensive. Even now, with a grown up son.
Every single time someone mentions ADHD, I brace myself for the slew of jokes and opinions that inevitably follow, tossed about by people who only ever read YOU and Huisgenoot, or watch Carte Blanche. Even if they’re not actually talking to me, I have to all but bite my tongue and I am not always successful.

I am constantly second guessing myself and wishing I’d done more, tried harder.
I probably could have. Should have.
If I’d worked harder perhaps my son would have finished school. Perhaps he would have gone on to some kind of tertiary education, perhaps he may even have become the Marine Biologist he always wanted to be.
Hindsight is always 20/20. And I didn’t know then what I know now.

Its exhausting.

Is it any wonder that my son occasionally faded into the background of my battle with ADHD?