Ugh, tough week. You know it’s going to be a bad one when your wife is crying after picking the kids up from school. On Monday. On that day, the usual thoughts and fears rushed through my mind when I was greeted, at my front door, by tears. “What’s happened to B?”, “Has he fallen?”, “Been expelled?” I’m sure I’m not alone in spending a disproportionate amount of my time worrying about how my son is getting on at school.
It turned out that it was not my son who I needed to worry about, but those around him. Apparently he has ‘inappropriately touched’ two other boys in the toilets this week. It appears that the boy who spends half his life with his hand down the front of his nappy fancied a change of scene, and let his hands take a little excursion. A change is as good as a rest I suppose, though grabbing your classmates genitals is probably not what is meant by this saying. And then, to add injury to insult, he kicked his TA in the face. Presumably this was during a post-groping meltdown. Two bad things in a row, though thinking positively, it would have been worse if he had kicked his classmates in the face and… no, let’s not go there.
School have told us he’s had an ‘off week’. His timing is perfect. The head teacher is talking to the school governors our request that B attends breakfast club. The fact that it even needs to go that far suggests a reluctance on the school’s part. Not the best time to be causing chaos, then. Add to this the re-emergence of shoving anything in his mouth (those boys got off lightly) and a general escalation in challenging and difficult behaviour and you have the recipe for a tough week at school.
At home, B continues to put our parenting skills to the test. Luckily, my wife and I seem to have fallen into a natural pattern of strategic coping. The trick , we’ve found, is to make sure that at any given time, only one of you has reached the end of your tether. That way, the other can step in with the required patience and calm perspective. Until they lose it, then the other steps up. That way, at any given point our children stand a 50% chance of not being strangled to death by a parent who has lost it. We’re quite a double act, my wife and I.
As a result of all this, it would be fair to say that good spirits have been in short supply, and positivity on the wane. At times like this, it’s difficult to find someone to talk to. By the end of the day, the last thing we want to do is re-live the day’s difficulties. I rarely talk at work about what’s going on- who wants to hear about my troubles? Staying positive can be difficult sometimes.
I found some comfort this week, though, by looking online. The internet is awash with brave and strong people coping brilliantly with their diagnosis of autism or life with autism in the family. Sometimes I find these things difficult to read. Other people cope so well; take such a positive view of their situations. At what point will I feel like that? When will I embrace the wonderful journey that autism has blessed me with? Such cynicism was put into perspective though, when I stumbled across a blog called Autism Positivity Day Flash Blog. I’d recommend taking a look at it and finding out what it’s all about.
In the meantime, I have included below some selections from the blog. I do so without permission, but in the hope that you will click the links and investigate further for yourself. Reading these words didn’t change what had happened this week, didn’t stop B putting things in his mouth and didn’t heal the TA’s face. But they did give me perspective, and the ability to stay positive.
So thank you to the writers’ below and to all those people out there giving their time to support and help people they will never meet. Your words are appreciated and I hope that the words I write will help others in the way these have helped me.
From Autism Positivity Day Flash Blog:
My son is four years old and has autism. He has taught me what love really is. He has taught me patience, empathy, kindness, and selflessness. Autistic people are not judgmental, they rarely lie, and they view the world through logical eyes. Without autistic people we wouldn’t have engineers, scientists, and safety protocol experts. Autistic traits are needed for our society to function. I understand that having autism can be difficult in a world of neurotypicals, but many people are working very hard to spread autism awareness and to teach others to be more mindful of those who have autism. Very soon in the near future everyone will know what autism is and it will no longer matter what the “norm” is. There doesn’t need to be a “norm.” We all just need to be accepting of each other.
________________________
It’s hard dealing with autism in the family, and I won’t lie, there are days when I am overwhelmed and out of sorts with too many questions asked repeatedly, (no desire to do) potty-training, too many doctors, and not enough time or therapy to do everything I want to for my children with autism.
Everyone has a different idea about what autism (or aspergers) is, how to diagnose it, and whether one therapy works better than another, or one diet works better than another.
But at the end of the day, how you react to having autism isn’t found in how you treat your autism. Sometimes, in the ongoing struggle of every day trials, of things that don’t make sense and never will, or situations that are uncomfortable if not downright impossible to deal with, it’s easy to lose sight of the fact that YOU (or your child) is an individual FIRST. Autism is always second to who YOU are where it counts.
Don’t let the stigma of the diagnosis, the thoughts of the uninformed, or your own depression, let you lose sight of that — YOU matter. Not the diagnosis. Not the label. Not whether you make great progress or still struggle. YOU. Let yourself shine! Don’t Give Up Hope.
I don’t know if you are reading this as another parent, overwhelmed with the diagnosis of ASD, as a young adult (or mature one) new to the late diagnosis of Aspergers, or as any other person struggling to understand the diagnosis … hating it, even.
Don’t Give Up Your Determination. Determination is what helps dry the tears and quiet the fears; it’s what is left behind when others try to dictate who you (or your kids) will be; it’s what you hold onto when you are tired and scared and lonely, when the world seems overwhelming and confusing. Determination will see you through the storms in your life; and help you embrace them and rise above them. Determination is your friend. Never give it up.
Learn to embrace the positive, the good, the unique, the loving, the innocent, the mischievous … and remember that these are part of your child as well. Help them to see that, and you will appreciate it too.
Don’t give up. Persevere.
What a tough day. But you are a very positive parent already. Loved your last post which made ME feel more positive about my son. So there you go
Thankyou x
Yep to the taking it in turns to hand over to the other parent, no questions asked. Yep to the reading lots online until I find what really helps.
Yep x
There is a Childcare Act which says LAs must provide appropriate childcare for disabled children. Perhaps you need to contact Social Services Disabled Childrens Team and ask how they can help your child be included in breakfast club? You may be entitled to direct payments for 1:1 support.
Thanks. The Head knows we’ll be expecting an answer this week, so we’ll see what happens. We’ve given in over a couple of little ‘battles’ with the school recently. Not with this though. I don’t see how they can so no. If they do, I will act on your advice. Thank you for taking the time to post a comment x
I hated those calls from school. HATED them. I never knew what the story was going to be & I am pretty sure I developed PTSD from them.
I am glad to meet you & I am really glad that the autism positivity blog helped you. There were so many wonderful, amazing posts that day. You are not alone & I plan to stop by your blog as this crazy life permits
So sorry you had a difficult day. I suppose you just have to take the ups with the downs. The posts from the blog are inspiring and I’m glad they’ve helped you.
My husband and I do that too…I really laughed at your double act. We adore our little autie fella, but there’s no doubting that his condition is sometimes really hard to live with.
I also have no doubt that he made me a much better person.
I hope you have easier times ahead XXX
Thanks everyone, your words of support mean a lot to us x
gosh, thank you so much. just read the bits from Autism Positivity Day Flash Blog, i cried.
A few years ago, my daughter was in trouble at school. The principal called me and said she was making “terroristic threats”. Some kids were poking and kicking at her and she told them to “stop it or I’ll kill you!”…..TERRORISTIC THREATS!!!!! Sounds like child’s talk to me….
Sounds like the headteacher is a twerp to me!