Another word from Downsdad: What about your OTHER kids?

I have a guest post to put up tonight. And I gotta tell you I have been so busy with Bratty starting her new school (more later)
that it has taken over a week to sit down and do justice to this excellent piece.

It is a topic of which I know nothing personally. But one I hear about a lot:

Worrying about your other "typical" kids.

Now Nick, the author has given me permission to edit his original post on where he describes the part of the journey we auties do not have to experience in the main; The medical emergencies. In the early days a new baby with special medical needs is going to completely dominate family life. So please check out the original, and bless all those that support families in those crucial times.

What is universal to all of us special needs folks is the ongoing dominance of the topic in our daily lives. I would like to live a day without once mentioning autism. I am much closer to that now that both my kids are in the best possible educational setting; and I can be confident that the staff there are taking care of my kids specific educational and therapeutic needs.
But then there is the political aspect of autism, where we are in relation to ongoing ancillary services and of course, the blog.
Autism, Special needs and Autism. Breakfast lunch and tea.

Which is fine for me because the only person I can annoy with all that is old enough to tell me to shut up and talk about something else.

But what about you folks who have a mixture of kids? Some with special needs, and some who are hitting all the milestones, kicking goals and achieving expectations; but not getting the attention they deserve?

I have these conversations from time to time with various friends. It seems to involve a mixture of guilt at treating the typical child like a third parent, wonder and admiration at how the typical siblings get on with life, without displaying any resentment or embarrassment of their special sibling, and sadness, that they are not being all the parent they should be for all their kids all the time.

So I will hand it over to Nick now to explore this in relation to his 6 month old son Jacob, who was born with Downs Syndrome.

Don’t forget the non-downers!
We’re at this half a year now, this having a kid with Down Syndrome thing.....
You’d think that Jacob had taken over. You’d be right. He’s a joyous bundle (cliché alert!) and he’s been educating us in a plethora of ways that we never expected, but that has its downsides too.
(Downsides. Oh but that’s a good one.)

One of the quieter disadvantages that you have to train yourself to watch out for is that you don’t neglect your earlier, ‘normal’ kids.
They’ll try to tell you in their own way, of course, but if that way means acting out or throwing hissies you’re likely to have less patience than normal, because you’re a little bit frazzled now that you’ve got Down syndrome too (you know what I mean).It’s harder to spot if they become withdrawn or quiet.
Easier to ignore too, what with all the special needs demanding your attention elsewhere. Withdrawn children is not something I can claim to have the remotest experience of however.

But whether extro- or introvert, if you ignore the behaviour or misinterpret it, it will come back to bite. Kids demand attention. They need it.
If they don’t get positive attention, they’ll settle for negative.

And that too will cause aggro. As if you didn’t have enough just now.

I’d love to be able to say that my house runs like clockwork, that we divide our time carefully so that everyone gets a fair portion, that all that needs to get done gets done properly, that everyone pitches in, that there is no constant cry of ‘Not fair!’ emanating from someone, that each accepts their lot and makes cheerful do with limited resources.

But that’s not where we are right now. It’s something that has taken me some time to accept. Lots of things need doing, but lots of other things need doing before them.

Jacob’s brothers, at six and three, are a challenge. They are demanding, selfish, ungrateful and unaware of exactly how much of their parents’ energy they consume.

It took a while for that epiphany where I went ‘Oh my God they’re me! That’s what I was!’

And then the note to self: ask parents why they didn’t murder me many years ago.

But that only consoles me so far, because I’m the daddy now.

My remit is bigger. It’s MY energy these little (expletive) are leeching.
If they had to pay $140 a barrel for it they’d wise up quick, I tell myself, because they get through a couple of supertankers each on a weekly basis.

There’s no easy answer. Life isn’t a sprint. This is marathon training. I have lessons to learn because I’ve never had three boys before. The youngest one has a recognised handicap, but believe me they all have special needs. As do I.
And in trying to spread my dadhood resources as wide as I need to, inevitably gaps appear. My temper gets tried too often, and I am learning how to subvert that. Why? Well because personal experience has taught me that throwing a bigger, louder hissy fit than the boys doesn’t solve anything. It just makes for a guilty dad, nervous kids and an angry wife. Take that on a picnic why dontcha!
So have I got any advice? Here is all of it.
Remember that your kids won’t remember how whiny they were then.
Forget how whiny they are now.
Lower your expectations.
If you can do one thing with each of your kids individually, no matter how short a time you can devote to it, do that one thing. Quality is what is memorable.
No amount of stuff you give will compensate your grown child for the minutes you didn’t give.
Don’t overexplain.
Don’t ever think that you’re not a kid yourself anymore.
Save something for you. Write a poem, grow roses, talk to a hamster, kickbox, blog, collect car tyres, sit in a darkened room and weep a little… I don’t care what it is. Make it yours and only yours. Everybody needs that space.
Accept that you will mess up.
Finally, and probably most importantly, don’t try to clean both ears with cotton buds at the same time.
This, uh, this guy I know told me it doesn’t work. "



Sister Wolf said…
Thank you for this post. What a truly dedicated father. His sense of humor will help him live through it all!
Elizabeth said…
I won't pretend to know how it is to live in your family, with all it's issues and concerns and joys and discoveries, but I'll thank you for posting about it.

When you post about your life, I get to learn, I get to make a discovery.
Anonymous said…
Good post Nick
Nobody does guilt better than the parents of a sp needs child. When I first realised that something was amiss with my wee man, I blamed myself for not giving him enough of my time. DH disagreed and said I gave as much to him as I did to the others. I have 4 children - 1 with autism, 3 without. The 2 girls came first now aged 7 and 5, then ds aged 4 and little bro aged 3 (just missed having 4 under 4 by a month -bummer!).

I think we do ok.. the girls are relatively stable although I think eldest has selective mutism (not diagnosed). They are close in age and are great friends. As for the boys-to the untrained eye ds is perfectly normal and his brother is the handful. Having the youngest was the best thing to ever happen to ds..little bro is very persistant and will not give up until ds answers him or takes whatever he is insisting he takes..the last 5 months ds is a different child when it comes to interacting with his siblings..he is really doing well.

Of course I don't give them as much attention as I should but I tell myself that they have each other so they are ok. Then Supernanny comes on the telly (they love watching the 'bold' children) and after watching it I feel as guilty as hell that I'm not giving each of them 10 mins quality time with me. I say to myself that I will do it tomorrow and make plans in my head of all I'm gonna do and it doesn't happen..due to nothing more than my selfishness for 'me' time.

Of course there will always be the excuses -2 o'clock and 3 o'clock pick up from school, then dinner, homework, tea, shower and bed so where am I meant to find the time? Even writing this gives me a knot in my tummy.

What is going to happen is that I'm gonna wake up one day and my eldest is 13 and I'm gonna regret missing this time with her cos I will never get it back.

But you know what Nick..this article could not have come at a better time for me..I have no excuses now that they are on hols and you've given me the kick in the ass I needed and tomorrow is coming and it will be the start of something new..i promise.

Thank you Nick & Hammie for posting

Anonymous said…
When my son got diagnosed and I was still "grieving", one of my favourite things to weep about was that my younger son would not have the big brother I had wished for.
My anxiety at the time got worse because I read an extract from a book by a boy who has an older brother with AS - and it seemed like all the family resources went into coping with the older child's condition.
But then I read something else, and realised my anxiety was "culturally conditioned". We have that idea about what a good childhood should be, and feel we should provide it for our children. When one of our children turns out to have special needs, sustaining this idea becomes a constant struggle, partly because our other children have to put up with less attention.

Truf (from RC)
Lisamaree said…
Thanks, Enc and SW. Poor Nick has been up to his cojones in hospital visits AGAIN! But your compassion is appreciated.
Now we just have to teach Nick that Manolos and Louboutins can save the world.(he thinks not)

Sesame and Truf, this is a much bigger picture. While I was denying I could comment, I was spending a week almost ignoring Boo while I nurtured Bratty and Mr Hammie (who had been away) In a two autie house; The higher functioning kid can suffer from the extra attention and preference given to the child causing ructions. And I find I prefer the company of Boo when I need a bit of company; just because we can share things more.

And Sister Wolf; I am loving the Autism Vox. My brain is being stretched like one of those DS lite games, maybe I might even grow some new cells.
But I still love pretty things.
Hello! I just posted on this post. I also appreciate your post on medication. Someone understands out there!!