As I write this we are 8 months into investigations as to whether our toddler has Autistic Spectrum Disorder, the road is long and stressful and whilst we are still awaiting his formal diagnosis, his professional team are all in agreement that ASD is an accurate diagnosis. His diagnosis will likely be complex and it is also likely that we still have many more months of assessment and consultation before we have a full and final diagnosis for him. He is 2 years and 4 months old and we realise we are very fortunate that we have got this far while he is so young, and of course there are many parents out there who are fighting tirelessly to get their children the support they need. Being a parent of a child with additional needs is a challenge, every day, but I would never change my boy for the world, here are a few of the things I have learnt so far…
- Fighting the battle for healthy balanced meals is pointless, and will cause you more stress than it is worth, because one day the only thing your child will want for breakfast will be a cupcake. You can prepare a colourful fruit salad, or a healthy bowl of wholegrain cereal but it will probably end up in the dog! Lunch will likely be whatever you can get them to eat, you try for a sandwich but that may be thrown on the floor, then you give some crisps and they will either be gratefully accepted or thrown on the floor and stomped into the carpet. Dinner is slightly easier as by now you are a pro in the serving of beige, processed foods, veggies are a no no. Let your child eat the foods that they can manage, some they may not like and some they may not be able to eat because of their sensory issues. Thank god for the multi-vitamin!
- New found appreciation for Justin Fletcher AKA Mr Tumble! Now, when my eldest son was little he absolutely loved all of the characters played by Justin. Me on the other hand, not so much, he drove me crazy. Fast forward to now and I have a non verbal 2 year old who struggles to learn sign language, we have Sky+’d so many episodes of Something Special and actively encourage our monkey to watch it. I learnt nearly all of the signs that I know from this program and continue to learn many more.
- Any parent of a non verbal child will feel my pain on this next point, when you hear someone comment about their child that just won’t shut up, or how they have been going on and on all day. When you hear that, it is a painful reminder that your child does not have any language, you think of how nice it would be to know what your child’s little voice will be like when they say their first word. It is easy to take these things for granted when your child does not have additional needs, I know because I was the same when my eldest was younger, and I probably moaned about him talking too much too.
- Getting excited about things that other parents just wouldn’t get excited about, like when your 18 month old claps, because actually this is the first time that he has ever done it by himself. At 2 years old when your child waves goodbye for the first (and only!) time, when other children have been doing both of these things for a long, long time. This is perhaps where I went wrong, I spent a lot of time comparing my baby to other children his age when in fact the developmental age gap between them was huge.
- Avoiding places that are not autism friendly, this is a huge one for us. We have a few places we can go out with our little monkey to eat, one of which is a pub around the corner from us, the seating arrangement is such that there are lots of sectioned of areas where we could eat away from too much noise and too many people. They have the TV on in the bar so there is never music on so it is nice and quiet at the table. We can’t shop in Morrisons supermarket, something about the tones of the tills and the background noise from the cafe is too much for him, yet he doesn’t react in the same way at other supermarkets. We haven’t yet had to abandon a full trolley of shopping somewhere, but I know that one day we will, and really, who cares
The most important thing I have learnt from being a parent to my little monkey is that when you are the parent of a disabled child, you are invincible, you are a superhero and nothing can get to you, or beat you. If you can handle a meltdown where your child will head bang on the wall and floor, causing physical pain because of the pain that sensory overload is causing them, and still hold them tight when they are headbutting and smacking you out of sheer frustration because nobody understands them, then you can handle all of the trivial things that life throws at you. Don’t get me wrong there will be tears and there will be days when you wonder if you are strong enough to get through it all, but you are, because you and your child are on this journey together.