So you have child with autism, you have a diagnosis, you have a school place and even receive DLA. All of the above are major obstacles you have to get over. Be under no illusions you will have to jump through hoops and in our case have to educate yourself on processes and have some heated conversations with the people who place the obstacles and hoops for you.Experience would suggest these people may frustrate the life out of you but they are not the enemy, they are trying to do the best job usually with hands tied by local authority budget restraints so remember to be firm but civil.
Budget problems are not your immediate problem doing the best for your child is the only priority to consider; never be rail-roaded or pressurised by authority as legally from age of 5 your child is entitled to full time education and no one knows your child’s needs like you do. If they can not provide the correct environment for your child they are failing they’re responsibility plain and simple and don’t be afraid to be vocal with that opinion.
So once you have got through the stress of the above its all plain sailing right? WRONG the world won’t stop turning the mortgage still needs paying, the car still needs tyres and the washing machine will still break down when you’ve no money. In short ASD is probably the biggest daily challenge the household will encounter but what happens to the family unit when bills need to be met?
In a nut shell it is very difficult to get a balance, if one parent works extra to make ends meet and provide a home that parent then misses out on the parental bond with the kids and the parent who takes on the responsibility of caring for the kids can often feel isolated and probably stir crazy!
The stress on the strongest of relationships and family units will become head splitting at times and unless you’ve an extraordinary support network nights out and long meals with adult conversation will seem like distant memories; even family days out are tough usually requiring military precision!
Most days I work late and am either greeted by a happy little boy clutching a Smyth’s catalogue and his trainers or a rat bag tired and screaming but usually still wanting to go out in the car; back to experience tells me take him out to the park, shops, beach wherever it stops the melt down and the fresh air usually guarantees no 2 am wake up with lights on trampolining on your head. 6 hours exhausted sleep is better than an hour here and there and the time spent what ever we do even after a hard day is priceless even precious and it de-stresses me from the work environment.
There is no manual to parent a child let alone an autistic child but the same principles apply the more you put in the more you get back; your child may prefer their own company but don’t let that stop you get on the floor and interact, get on the zip wire, slide or swing (even the bloody North Sea as happens here) to share experiences.
A happy child will interact more positively in my opinion and when you learn what makes them happy it’s great to use as a distraction to nip a potential meltdown in the bud.
So summarising be civil,firm,tired,skint, stressed, thoughtful of your partners situation but most of all try to smile and interact with your child.
Just wanted to say its good to hear shames perspective. Ive been following your blog for a while now and totally identity with how hard life is with a child on the spectrum. My son is the same age as reilly and I have struggled with the day to day as well as accepting the condition. Theres not many fathers attend the support and play groups we attend so its been good to hear shanes take on things on your blog.
Keep up the good work.
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Thanks Craig. Its so hard isnt it, I feel like we are just winging it day after day. Ill get Shane to write some more blog posts. We are no means experts but hopefully people feel a bit more normal and can relate to our thoughts and mishaps.
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