Now admittedly I am writing post 27/30 in the “Health Activist Writers Month Challenge” (#HAWMC) some 5 days overdue and yes I still have 4 more post to write (this one included). As its now May, a brand new month, technically the challenge has come to an end but come on, cut me some slack here! Mother of three demanding little monsters and them monsters come first. However, having come so far and not being a person who gives up on things easily I am determined to see the challenge through to the very end!
So… The 27th challenge was to give my top 5’s. These consist of the top five things I find most difficult as a parent of a child with Aspergers Syndrome as well as my top five victories (the things that kept me going when things got tough or the battles we over come)!
Now having bashed my tired brain for a while, I finally compiled a list for each, broke it down to the required number, explaining my reasons for each.
Things I find most difficult
1)Sleep: Yep, it has to be the total lack of sleep! Yes, this is more difficult than the meltdowns, swearing and black and white thinking style (such a thinking style can create problems). I often state that I’m used to the crazy sleep pattern that has been part of my life for donkeys years and as a result I’ve adapted my body clock, but in all honesty, despite this being true it really doesn’t make it any easier! Some days I’m fine where others I’m seriously having a hard time dragging my own arse around the entire day. I snap more easily, cry at day time TV and not really dig the huge black bags that dangle under my eyes most days.
2) Anxiety: Little man can become extremely anxious about the “smallest” of things. He can get so worked up that he loses himself in a thick fog of panic. Little man needs lots of reassuring when his like this! He may ask the same thing continuously, take many trips to the toilet and pace about loudly speaking to himself. His even been know to quite literally worry himself sick!
3) Discrimination: This is not a trait but something that comes with this diagnosis and many others besides. Discovering that those that are meant to do the best by your child, are actually treating him in a way that sees him extremely disadvantaged to that of his peers, is a terrible thing to witness as his mother! The fact that my child starts to become aware of this treatment, makes the situation one million times worse.
4) Days Out: These are meant to be enjoyable but yes, I do often find day trips and holidays quite stressful as does little man. This sometimes restricts our options, if deciding to embark on any spontaneous trips I need to do so at my own risk. Nonetheless, good planing and preparation is the key and combined have resulted in some good days out with little problems.
5) Meltdowns: As if these acts of built up exploding stress wouldn’t make my list… Of course they would! What can I say except who really wants to deal with screaming, swearing, crying and violence! But above all else the most difficult part of parenting a child with Aspergers is actually having to see your child become that overloaded and at times not being able to make things better for them! No mother wants to witness they’re child in this state.
1) Diagnosis: This itself is a victory, as to finally have that label actually opens more doors to services and support. I’m not starting you no longer need to fight for things, but without that label you have even less chance of getting anywhere.
2) Results: Having fought some almighty battles to obtain everything from acknowledgement, respect, suitable education, fair treatment and more, I can tell you it really isn’t easy! You discover that those you put your trust in are those you may need fear most! It’s tiring and at times you feel like just throwing in and trowel. You don’t, you just keep going and when the good finally happens its the most amazing feeling ever!
3) Progress: Watching the progress my son has made since attending an independent special school is wonderful! When your son goes up 7 reading levels over a few terms you know you made the right choice.
4) Rewards: Every time my little man receives an award at school whether it’s for improvements in behaviour or that of his learning progress, I’m overly proud. Of course I feel the same for my daughter, but these are things little man never received in mainstream and it’s lovely to see how such achievements rebuild his fallen confidence.
5) Inspiration: The inspiration my child’s diagnosis has given me to bring awareness and support to other parents of newly diagnosis children.
So, there you have it, my little list of 5’s.
This post is 27/30 in the #HAWMC