Autism is a Dirty Word

This week, Jane took the boys’ grannies out for afternoon tea at a local garden centre as a Mother’s Day treat. Inevitably conversation turned to the boys. Now, my mum has this ideal of how the boys should be, and let me tell you, autism doesn’t fit in with that thinking. Matthew’s diagnosis wasn’t taken well, and four years on – as then – she is in complete denial. Jane said that according to her, there’s nothing wrong with the boys and they’ll just grow out of it. Either that’s showing a complete lack of understanding about autism, or its an unwillingness to face the truth. Its completely ridiculous to say there’s “nothing wrong” given all the difficulties Matthew has had at school the last few years. Its clear to us that he has deteriorated a lot, and needs much closer support at school. It got so bad that according to a retired doctor at the church she goes to – someone who has never met the boys – told her she was right, and there wasn’t a problem. Never mind that we’ve had clinical psychologists, consultants, speech therapists and other specialists assess the boys and conclude they are autistic. We’ve never shied away from the truth, and are quite open with others who ask why they act the way they do.

Apparently though, one of my mum’s friends’ grandson has been diagnosed with autism. Now, that’s nothing to be ashamed of. In fact, Matthew is quite proud of the fact that he’s got a special brain! But Jane said when she was telling the story, the word “autism” was mouthed, and not even whispered. Why? Is there anything to be ashamed of? Would staff and other diners have thought anything less of the boys? It was disappointing that it came on Autism Awareness Day. Its sad that even on a day where we should have been shouting from the rooftops about autism to make sure all the myths around it are dispelled, that autism was clearly considered a taboo word by someone who should be supportive of the boys. Like it or not, they have a lifelong developmental condition that will affect them for all time. There’s nothing we can do to change that but its down to us to do all we can to support the boys. Being in denial will help no one.

The trouble is that although I know the boys’ gran (my mum) loves the boys, sometimes its hard to say. My mum attends her church every week, and is forever going to meetings there. Jane said she said the boys are her life. Sadly, we’ve lost count of the times that she said she couldn’t come over because some irrelevant meeting at the church was that much more important. One of the things with our lads is that when a plan is made, they lack the flexibility to understand that might change. So, we’re careful that when we make plans and tell the boys, those plans are carried through. But we’ve had occasions where we’d told the boys grannie was coming over only for me to get a message to say a church meeting had come up that she just had to go to. Try telling that to two ASD boys. The only conclusion that they could possibly reach is that the church is more important than they are.

I do wonder how many people there know the boys are ASD. Its hard to believe that anyone in denial about it will be freely telling other judgemental people that her grandchildren aren’t “normal.” Well, if people are going to be like that, who cares? Our boys are lovely, and autism has made them who they are. We’ve not wasted time wishing things could be different. We’ve just love them and get on with coping with the challenges that autism throws our way.

You soon realise that to make it through, you need a close support network. Those closest to the ones with an ASD should be giving unthinking and unwavering support. It says a lot when you can’t count on close family to offer the support you need. After four years following diagnosis, with Matthew deteriorating, if the diagnosis hasn’t been accepted by now, I think it never will be. That won’t stop us from trying to get the boys’ gran to see the autism light.

Anniversary Time

11 years ago today, Jane and I were celebrating getting married. 20 February 2003 was the fateful day. We had a small gathering as we didn’t want to make a huge deal of it. We had those that mattered most around us, and totalled 14 including the minister who did the service. It was at a lovely hotel in Aberdeen’s west end, and the meal was terrific, and everyone enjoyed themselves. We managed to get rid of everyone by 8pm – not for the reasons most may assume, but because we needed our sleep as the excitement of a trip to Toronto the next morning for our honeymoon beckoned!

The last 11 years have had their ups and downs – as any marriage would – but we’ve had more ups than downs, and we are happy. Of course, we have the boys, which really puts the icing on our little cake. Jane and I always take the time to mark our anniversary – although we don’t go heavy on the gifts. We set a challenging budget of £5 each, and use the anniversary token (this year it was steel) as the theme. Jane hit the jackpot last year, and managed to get mine for less than £1 including postage! The value is irrelevant. Its more that Jane has thought about it that matters more.

As usual, I took the day off work, and we headed into town, principally for lunch at a restaurant in the main shopping centre there. Its a buffet restaurant, and that suits us fine. It may not be Michelin starred, but its something we enjoy, and its a time where its just Jane and myself. Don’t get me wrong, we love our time with the boys, but we do treasure our time together without the boys. Its a chance for us to be human again. It was preceded by a leisurely coffee, a bit of shopping, then lunch! It was a lovely morning with Jane, and after the start to the year we’ve had, it felt like we’d really earned it.

Well, we’ve got year 12 underway, and no doubt we will make the most of our day out (although we really do need to make the time for ourselves more this year) and will enjoy it when it comes. Right now, I’m thankful for the last 11 years, which Jane has made so good. Thank you Jane!

In The Clear – But Warning Taken

A few weeks ago I had a bit of excitement by way of a dash to A&E for a heavy nosebleed that just didn’t want to stop. I was told that my blood pressure was quite high, and that a trip to the GP was in order to have that checked out. That was last Friday.

Well, the good news was that for starters my blood pressure was down a bit from the previous week’s reading, so it was heading in the right direction. Even better was that all the blood tests came back negative. Cholesterol reading was a bit above average (6.2 compared to national average of 5.6) but there was no other issues to deal with. The ECG had been a bit of a worry – but it too came back A-Ok. It was all a bit of a relief, but I agreed with the doctor that getting just a little more exercise, losing a little more weight and watching what I eat was very much part of the plan.

I was wary about a lot of physical exertion immediately after the nosebleed, but in the last few days, I’ve gone back to walking from the centre of town after getting off the bus. Its a 2 mile walk to work from there, and taking 30-35 minutes (its uphill!) gives me a decent amount of exercise. Then there’s the 30 minute walk back, so all in all, its 4 hours exercise a week before I even think of any formal exercise. I might just get back to doing zumba on the Wii. I did that before when we were really watching our diet and exercise, and it worked a treat, so back to that this weekend.

Even though all the tests came back negative, and my blood pressure although high isn’t dangerously so, I’ve taken the whole episode as a warning to do the right thing and make sure I’m here for the boys while they grow up. We were so good last summer and I lost 22 pounds at one point. I know I can do it, and I’m keen to get back to it. Not just to look and feel better, but to make sure my blood pressure remains under control. I’ve still to get a 24-hour blood pressure monitor, but the doctor thinks it will only confirm what he said last week.

At least now I can move forward with the worry taken away a bit. I’ve been downloading some relaxation apps this week, and they work a treat (as Jane will tell you when I fall asleep halfway through!) The diet & exercise is one thing, remaining as calm as possible is something else. It all adds up to a hopefully healthier me for 2014.

Troubled Aspie

Jane is in hospital at the moment following complications reslting from a tonsillectomy. She coughed up a lot of blood on Friday which ended in a trip to A&E. They kept her in for observations, and despite her seeming fine yesterday, they decided to keep her it. Just as well as she woke early yesterday and coughed up a lot more blood clots. After an urgent procedure to “vacuum” up the blood clots around her wound, she was sick and brought up a LOT of blood that had been in her stomach, having drained from her wound. Steroids were applied to help the wound heal and she would be kept in until doctors were satisfied bleeding was stopped for good. Jane had joked before her op that she’d be the 3 in 100 that had post-op bleeding. Many a true thing has been said in jest!

But when I expected Matthew to be hit for six, its been Daniel that has unexpectedly been hit the hardest. He seems a resiliant, independent little soul at home, but its clear he’s been hit hard by it. The last 2 nights  he’s not settled until near 11pm. I’ve let it go as it was the weekend, and he  needed to be with me. Tonight we had a relatively calm evening. Both boys were bathed and ready  for bed by 8pm. We played a game at guessing caracters from the Lego Star Wars character encyclopedia and it was lights  out  by  830pm. Not bad. But since then, Daniel has been up practically every 20 minutes. He’s missing his mummy and he’s worrried. I told them Jane didn’t have a good night and it might be a couple of days before she is home. I reassured him that when she is poorly, she is in the best place.

Daniel gives an air of being confident and unfazed a lot of the time, but he’s a complex, sensitive little man who can surprise you regularly. He takes every thing to heart and finds it hard to vocalise how he is feeling and what is bothering him. Jane not being here is really troubling hi. If he’s showing he’s this worried, then you can be sure he’s a lot more worried than that. He is a worried little guy at the moment, and mummy can’t come home one moment too soon as far as he is concerned.

Being There

Today it was back to work for me. I actually went “back” yesterday, but I was working from home, so it was almost an extension of the week off I’d had so I could be at home for Jane & the boys while Jane was in hospital and at home recovering from her op. It certainly made me realise what Jane does for us all.I think Jane feels a bit guilty for the time off I have taken at the start of the year, but I’ve taken the time off because I wanted to, not because I had to. 

The marriage vows we took made reference to “in sickness and in health” and its right that I am there for Jane when she needs looking after, and that I am there for the boys who have been shaken by seeing their mum so poorly. I’ve just about managed to keep the household going! Its hard work as many of you will know. I think what its made me in particular realise is that we don’t do enough for Jane when she’s feeling well. Its not about trying to pick up the slack when Jane is ill, but its about doing our buit to help her all of the time.

Thanks to my employer using a flexible hours system, I was able to drop the boys at school before heading off to work for the morning. I was able to return home at lunchtime to work from home for the rest of the day. It meant that I could pick up a prescription for Jane as she had developed an infection in the wound from the op. Otherwise, she might have had to wait until Monday at the earliest to get to the doctor herself. 

But at the end of the day, looking after Jane when she is ill is never an imposition. My place when she’s ill is with her and the boys, and that’s where I intend to be.