M55

We Walk The Long Road

August 03 2016

Inspired by My Urn's recent post and conversations I've had had with fellow pie'ers I thought I'll start this topic. A brave man posts "I'm crying" and this pain I know all to well, first hand. The "unique circumstances" part of my profile is our oldest son is special needs. I always put it out there when talking about the kids as it's important to me and I have no secrets. I also find it interesting that usually someone I'm talking to is one or two degrees of separation from special needs in their family or someone involved in helping people and families with special needs. I know I'm not the only with unique circumstances. I know I don't walk the long road alone, so feel free to add to the conversation. When the education system says “your child doesn’t fit in mainstream” you knew it was coming but so soon. That feels like a kick in the balls, the sting dulls with time and becomes an ache that rests in the pit of your chest that won’t budge. Our first child was born a scrawny little fella and a wonderful midwife once said “he looks like he’s been here before”, maybe the lady was just being nice but in later years I took that as there maybe in that. I haven’t latched on to a particular belief of a particular higher power but I wonder if there is such, maybe I, we were chosen in some way. I was once told “god only gives us what we can handle”. Makes me wonder, maybe he’s here to teach me, us something. I didn’t choose to get involved with special needs, it just kinda happened. What amazes me is the people that do and have chosen to get involved, to help us, to make a difference in and to someone’s life, to my life. From the magical people that reconstructed his head (Craniosynostosis) to reconstructing his feet (Bilateral Talipes) to hand making his shoes, OT therapists, Speech therapists (severe Dyspraxia) teachers’ aides, teachers, sports organisers, just to name a few that have chosen to make a difference. All and any are equally special and equally important. Also he was born with a depleted amount of white brain matter so he is classed as globally intellectually delayed. He’s just turned 15 and started watching, following and understanding Pepper Pig. That’s a big reality check. When he talks about working when he finishes school, being a bus driver, crosswalk man, work in a shop or teacher, you tell yourself you’re not lying to him your just fibbing, telling him what he wants to hear to protect him from the reality that there is no such place for him after school the way funding just constantly and quietly keeps cutting cut back for any type of work. When he see’s your eyes watering and he asks “you got Hay fever” you agree so he doesn’t get upset. We wondered who would look after him when we’re not around when we’re gone, at school, after school, on weeks, going to the shops etc. It’s not unusual to have the complications he has though unusual to have them all in one person. We had a genetic study done to find out if other children would be affected. That was inconclusive, took a punt and we had to brothers for him. He certainly has taught us, his brothers and those that know him, he’s taught a lot in his subtle way, as all special needs people do. The assistance available to us is his health care card, Disability Services assess him, advise his situation and provide a list of service providers at our expense, do we say thanks? As he lives with family and as far as I know NDIS doesn’t apply. It’s so hard to see a mum fill out the three page form to retain the health care card for the odd bit of medicine year after year, permanent disability means he won’t grow out of it. The only treatment, the only cure is love, affection, caring and lots of hugs. During counselling I was told the divorce rate is ten times higher for families with special needs children. I liken it to elephants appeared in the room over time and one day the elephants stampeded. I come to understand and accept how the relationship ended though we will always have a parenting relationship. I don’t refer to my former wife as the ex or anything derogatory, I admire her as a person, woman and a wonderful mum, just we can’t live together. We have to accept there’s not likely to be any housing arrangement other then living with family for his entire life. We hope there could or would be some sort of group living but it’s just hope. The reality is I’m looking at putting a granny flat in the back yard and he live independently and protect in that way. I recently wrote a post about “swimming against the tide”, I also use that to cope, accept and understand this part of me. One love, One blood, One life You got to do what you should One life with each other Sisters, Brothers One life but we’re not the same We get to carry each other, carry each other One Cheers

Comments

tylannister

8 years ago

Adam - thanks for sharing that. It's always good to see the world of a parent like yourself to give us perspective on the things that we love and cherish and value and far-too-often take for granted. I have some close friends in NYC who have a son born with Williams Syndrome and I've watched them struggle through dealing with all of his medical conditions. I am continually amazed that they remain together and worry that they may not be able to maintain things. And I've watched my best friend's family work their hardest to provide a fulfilling life for her sister with Down Syndrome and make sure that she will always have someone in the family to live with. In particular here, I love how you refer to your wife as your former wife rather than your ex. I really appreciate that distinction. I'm lucky enough to be on good terms with the mother of my girls - I've frequently referred to her as my ex, but it never feels like it gives her enough respect. I think I'll have to start using it myself. I am sure that your hard work, sweat, and tears often go unnoticed - I'm glad you gave us this. So much respect for you and all you do for your family.

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RHP User

8 years ago

Yes carry each other. Share the load. When you need help, ask. And if you see someone else struggling, give them a hand. My grandchild is on the autism spectrum, and I see first hand how much love and commitment and energy he recieves 24/7 from his parents. And who cares for the carer? Thanks for sharing yourself Adam

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RHP User

8 years ago

I read your heart wrenching post this morning, didn't have time to comment then, and even now, It's hard to know what to say, except I salute anyone in your situation. I think the hardest thing is the permanency of the problem, the lifelong aspect of it, no reprieve, no down time for you, and no hope of recovery. That's hard to read but thank you for sharing with us. My husband and I talked about the 'what ifs' before we had children, my thought at the time was that you love a child regardless, if they came into the world with a disability, we'd just pull our sleeves up and do the best we could, adjust accordingly, but all the while, we were both well aware having good intentions was all good and well, but if placed in that situation, life would change forever, it would be extremely tough, and how tough, none of us know, at least those of us who haven't been in your situation. So tough for you. I don't doubt the love runs even deeper with special needs children. My hand is on my heart. Parents and carers of special needs children, need plenty of support, I'm guessing plenty more than what is on offer

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PatchworkGirl

8 years ago

Thank you for posting this, and I hope you can feel my virtual hug. I'm reminded of something I read once - a parable of sorts, about planning for a trip to Disneyland, and landing after a long flight, only to find you're in Denmark instead. It's not what you signed up for, and it's not the holiday experience you expected, but you eventually realise that Denmark is good too. No spinning teacups, no selfies with Mickey, and kings move at a completely different place, but it's good. It's lovely. It's your reality. Having kids with differences is like that, except you don't get a return trip. The whole "God doesn't give you anything you can't handle" thing? Sometimes I think "yeah bring it - what, did you confuse me for some bad arse superhero ninja type person?" But mostly, I think that's crap. And I also think the idea that those dealing with kids with special needs are some kind of super-parent, doing something out of reach of everyone else, is also crap. Because parenting is hard. And some people's hard is more draining, more challenging, more ongoing than others. So what does that mean? For me, it means that those people need to draw on reserves that the rest of us might never need to dip into. But that doesn't mean you're some kind of super-parent, separate from the rest of us. We've got your back. We'll carry you. And I'm so glad you have a community of people around you to help carry you when it gets tough. You're in my thoughts today. xoxo - Posted from rhpmobile

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ross52

8 years ago

That's a big story. My beloved has a 40 year old son with right sided hemiplegia, bullied at work, uncared for by the organisation that took him on as special needs. But he's smart and he's discpilined, and he's still standing. For her the pain is a constant, not something that ever stops, though most times now it's an underground river. I dodged a bullet, my first child with my first wife was stillborn, full term, with a hole in her spine. Would have been a different life for me. That pain is still there, still the same as in those perplexed hours sitting iwth our child, and wlking home from the hospital wehile my wife slept at last. Respect to you, living your life bravely, and with constancy. And respect to this forum, where people speak with honesty, and are smart and respectful. Ross

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RHP User

8 years ago

Sadly the notion of "God" not giving more than some can handle is woefully untrue. If it was true there would be no suicide, it's a fact suicide is a bigger cause of death than road trauma.I have walked a long road in the shadow of suicide, I'd like to see the stigma taken away from this issue and allow it be addressed in an open and responsible way .Suicide is more than just about depression, it's about running out of options and capitulation.

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PatchworkGirl

8 years ago

I've heard it a lot, and I've got one dear friend to me who has a daughter with severe and debilitating disabilities. Her greatest frustration is when people say to her that they'd never be able to do what she does - as though she deserves what she is dealing with because of some innate "dealing with difficult situations" gene. I completely understand what you are saying though. These conversations are incredibly important. xoxo

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PatchworkGirl

8 years ago

I just reread the first line of your post, Mr Urn - please don't misunderstand me, I wasn't implying that parents of special needs children are the ones claiming superhero status (although they probably deserve it!) My comment was about others who say that about them, implying that they are better able to deal with the difficulties they face because they are somehow "special", or more qualified/ capable to do so. My comment was basically along the same lines as yours, although perhaps not so clearly phrased - parents, no matter what we are facing, generally do the best we can. xoxo

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RHP User

8 years ago

I understand how you feel all too well. Wish I could verbalise as well as you but for me most of the time now I don't even think about the fact I have a child with a intellectual disability, it just is. I found I went through a grieving process as my son went through certain milestones, that were great experiences for my 2 daughters but generally just bloody hard work for my son like first day of school, first day at special school, not getting his learners at 16 etc. I grieved each time for the way my son's life should have been, not this constant struggle and never being accepted. Well my son is 21 now and yes it's hard to hear him tell me how much he wants a job and I worry about what will happen when I'm gone but like you also mentioned Adam, everyone is richer from having a brother, sister, aunty,neice, close family member, who has special needs. We were fortunate enough to be involved in many support groups, Special Olympics and the like that my daughters just have the most natural, familar attitude with all range of people and a very mature understanding of the very basic human right of acceptance which we sometimes take for granted.

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RHP User

8 years ago

When things go wrong, as they sometimes will, When the road you're trudging seems all uphill, When the funds are low and the debts are high, And you want to smile, but you have to sigh, When care is pressing you down a bit, Rest if you must, but don't you quit. Life is queer with its twists and turns, As every one of us sometimes learns, And many a fellow turns about, When he might have won had he stuck it out; Don't give up though the pace seems slow - You may succeed with another blow. Often the goal is nearer than, It seems to a faint and faltering man, Often the struggler has given up, When he might have captured the victor's cup, And he learned too late when the night came down, How close he was to the golden crown. Success is failure turned inside out - The silver tint in the clouds of doubt, And you never can tell how close you are, It might be near when it seems afar, So stick to the fight when you're hardest hit - It's when things seem worst that you must not quit.

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RHP User

8 years ago

Great post, thanks for sharing.I need to point out I'm not suicidal and never have been. I did however have wreckless disregard for my mortality when I was younger, hooning round on motorbikes thankfully I lived. Fuck it was fun!I have intervened in two attempted suicides, one involved alcohol and a firearm, very scary but no one died that day.I have been known to be outspoken and contemptuous of people who have committed suicide, that hasn't increased my popularity and I still hold some of those selfish arseholes in contempt.Meanwhile I have the utmost respect and empathy for Adam and those who tread similar paths.

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We Walk The Long Road

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