What I wish everyone knew....

I am the proud mother of a child with special needs.  He might not fit ‘your’ criteria for being classed as special needs, so let me enlighten you on what life is like and perhaps then you can understand why I make certain decisions regarding MY child that you may not understand.

Being ADHD, people automatically assume he is an extremely hyperactive child who is naughty and doesn’t listen. Let me educate you... being ADHD doesn’t ALWAYS mean the child is bouncing off the walls.  It means that when he finds himself in a situation that he does not know how to deal with, he reacts in a way that he can deal with. Be this perceived hyperactivity or simply sitting in the corner reading a book quietly.

As a mother of an ADHD child, I often find myself sitting on the floor next to his chair, simply rubbing his hands because he cannot stop the nervous movement that is preventing him from doing anything with his hands. He crushes his knuckles against the desk or chair as hard as he can as the pressure/pain response triggers more quickly with the brain than he himself can instigate and process, which relieves the symptoms. To take his mind off it, we put on a video or something he can simply sit still and focus on, thus allowing his brain time to catch up and calm down.

Yes, he has moments when he is bouncing off the walls (high pitched squealing and laughing, unstoppable running around) – but this is usually because I as his mother, have decided to allow him the normalcy's of being a child and indulge in something containing sugar. Don’t feed your child sugar for a week and then give them a lolly and we’ll see whose child fits into your naive ‘ADHD’ categorisation.

I am the mother who has had to watch my chubby little bubba grow into an extremely thin child who factors in below the 5^th percentile for weight. Those same chubby cheeks are now hollowed out, his eyes seem too big for his face, his little ribs stick out so much, I’m worried he will break one if he bashes into something too hard. (Did I mentioned he has broken his arm twice in a 12 month period) His little knees just don’t seem to fit on his very skinny legs that just don’t seem strong enough to carry his 25kg frame. 25kg’s isn’t a lot when you consider the average weight for a 10 year old of his height is at least 10kg’s more. Even more concerning when I tell you he has been the same weight for the last 3 years – he hasn’t put on a single kg.

I am the mother who has become obsessed, and if there were a stronger word than obsessed, I would be her too, with my son’s food intake. I wake up in the morning thinking about how and when I can ensure he gets his required calories for the day. I am the mother who has to take all of this into consideration when trying to factor in the following:
My son doesn’t like anything runny/saucy; he refuses to touch red meat as he cannot digest it and being constipated is not pleasant, he doesn’t like certain textures or smells. We are super lucky that he doesn’t mind the colour of his food – I have much empathy for mothers with children who don’t eat certain coloured food.

So next time you’re dishing up dinner for your family, consider that my son doesn’t eat, to name but a few:

·       pasta (slimy texture)
·       potatoes (grainy texture)
·       tomato (too wet/slimy)
·       any dairy (too creamy and thick on his palate)
·       Vegetables of any kind (each one has a texture he cannot handle)

And what he can and can’t eat this week, will change next week, so every meal is trial and error.  No he isn’t just being a "stubborn child who refuses to eat", I’ve watched him shovel food into his mouth because he is literally starving and his body convulses and he ends up gagging and throwing it all up. My child has lain on the toilet floor sobbing because he is so hungry and he can’t keep the food down.

So when we agree to go out for dinner with you and my first question is – “what is on the menu that he can eat?” I’m not being a parent pandering to their fussy eater child; I’m a mother who would like her son to feel normal, to go out with others and enjoy his meal.  A mother who would also like to enjoy a meal out with friends, being social.  It’s wonderful that your child is so willing to try new foods, but for one minute, consider that my son doesn’t want to throw up in front of a bunch of strangers because his overly sensory brain doesn’t like what he has put into his mouth. I have another son who will eat anything and everything, (and he too is ADHD diagnosed) so I get your thoughts, I know what you’re thinking, because I too ask myself those same things and then for a moment I stop and consider how my son is feeling, what he may be thinking.

Let me add to this that his mealtimes don’t coincide with what is considered ‘normal’ Eating breakfast before 10am to him seems impossible, yet as a mother, I have to force and watch my son shovel breakfast down as I know he needs to go to school and function for a few hours before tea time. Now consider this, your body’s breakfast time being 3-4 hours later that it ‘should’ be means your lunchtime is 3-4pm and your dinner is around 9-10pm. Fit this scheduled in with school, homework, activities, bedtime and tell me just how organised you think I need to be. So no, I’m not OCD, I’m just a responsible mother doing what is best for her child.

I am the mother who gets up every 2 hours at night to make sure her son is sleeping. Yes, it is frustrating that often I find him huddled in bed with the iPad watching a movie or playing a game, but consider this.  His brain produces less than 1% of the required melatonin it does for an average child of his age. A hormone which would enable his brain to recognise key stimuli of needing to slow down, shut off and rest. As an adult it is suggested we have between 6-8 hours of good sleep per night. For an average child of 10 years old, the sleep requirement is between 10-12 hours. So when I tell you that assisted my son gets between 3-4 hours’ sleep per night, you can appreciate just how exhausted we both are. Spend the next two nights getting only 5 hours sleep and then we’ll discuss how pleasant your demeanour is towards people who think they know and understand you.

Tell me how you think you’d deal with peers staying away from you because they think you’re grumpy and short-tempered.  How would you as a parent cope with teacher’s chastising you about non-relevant things when you have all of the above going on?  His "violent outbursts" at school are not a result of the games that he plays or the books that he reads or the kids that he hangs out with, they are a result of his inability to process his feelings on a "feelings scale" and respond accordingly. For James, he is always at an extreme emotional level - shutting down completely or having a massive meltdown. I wonder how people would react if just for 30 second before they do, they stop and consider what this little person is thinking and feeling and trying to understand for himself.

Shall I mention the sensory issues he deals with daily? We all have 5 senses that function, hopefully, pretty normally. My son’s eyes hurt because he has to try to focus on what he is doing so much more because his brain isn’t always processing as it should. I guess he feels that if he sees it, then hopefully some part of his brain will remember it.  His sense of smell is greatly heightened, which as you can imagine causes issues with food and going new places. He is extremely sensitive to sound, his brain is already working overtime to accommodate for the lack of attention and focus, loud noises – definitely a no-go.  As you can imagine his taste buds are off the charts – bland food with minimal flavour must surely be a boring way to sustain yourself, don’t you think?!

I think the worst of all is the sense of touch – SPD - do you know what this is? Sensory Processing Disorder.  When someone who clearly has no idea of what is really happening decides to be a nosy-busy-body and comment on what my child is or isn’t doing, consider how much social attention you have now placed on my son.  Consider how as a child he must feel having an adult draw stranger’s attention to him for something they all do not understand. No, my son does not need you to hug him; he doesn’t like to be touched by strangers because

a) Its too much stimulation for his brain to process

b) You smell different, again too much for his brain to process

c) You really don’t understand, so pretending you’re giving him sympathy when my highly insightful child can sense that you’re trying to put a band aid over something that really doesn’t need attention drawn to

d) you touching him is unwelcome – he will ask if he needs to be touched by you – how would you feel if I walked up to your child and simply started hugging them or patting them on their head and making inappropriate comments about how they will grow out of this because it’s just a phase?!

I am he mother who sits and rocks him every night while rubbing his back and arms and legs in the places and manner he can tolerate and finds acceptable.  I’m the mother who has over the years sung the same songs over and over again to build up his tolerance as I know how calming soft singing is to him. I am the mother who gets down onto my knees to look him in the eyes to make sure that he hears me when I speak to him. I am the mother who has to remind her child several times every single day that he has his pants on backwards or his shirt on inside out.  I am the mother who has to make sure my son wears underpants because society says it’s unacceptable for him not to wear underpants even though I know the constricted feeling of tight undies drives him insane. (I also do it because I know that other kids are cruel and will tease him for something so insignificant)

I am the mother who has to brush her son’s teeth for him because he gets distracted and forgets to do it properly. I am the mother who still has to wash her son’s hair every day in the shower because he hates water so much and even though the shower water is falling onto his body, it’s so much better than him submerging his little body into a bath of water. (imagine how much this mother misses her little tyke playing with bath toys in a large bubble bath and how much I would give to have a soaked bathroom knowing their kids has had an absolute blast pouring cups of water over everything).

I am the mother who has to remind her son to wipe and flush every time he goes to the toilet because it has to be done despite him hating the feeling of wiping his skin and the sound of the flush.  I am the mother buying her 10 year old Velcro shoes because despite him learning to tie his shoelaces at least twice a month, he forgets. I am the mother who allows her son to sleep with the light on because being in the dark is too much sensory deprivation for him to cope with. I am the mother who allows her son to wear wheelie shoes everywhere we go, even though they irritate me and I’m always concerned about him falling and hurting himself or bumping into someone else and hurting them, because I know that his legs get tired and that the wheelie shoes do in fact strengthen his legs.

I could spend days writing about how life is with a special needs child, (I'm sure I have left out loads of things I will think of later) but all I would like for you to think about now are this:

When I say “we’re having a bad day’ it could be for any number of the above reasons, but mostly a combination of a few, so please just understand that we’re not blowing you off, we’re honestly juggling so much at that point in time, adding an outing and all the things that go with being out, is just too much stress for all of us.

When I say we have to go home because its bedtime o mealtime etc., it’s because routine is the best way for our son to function in life – he doesn’t like change or surprises, so the more routine he has, the better for him and everyone around him.

When we do agree to go out, please understand that I will be concerned about my son keeping busy and by giving him a phone or something technology based is not because he is addicted, it’s to keep him calm and from being over stimulated by everything around him – trust me, we’ll all have a better night out if he is happy.

To other parents – yes, my son is a little different, but your child is no more normal than he is – stop for a moment and assess what your child does that you overlook – I’m just more open to accepting the way my son is and I won’t make excuses for it.  Believe me, when he is naughty or in trouble, he is treated like any other normal child – he has repercussions for bad behaviour and punishments for wrong-doings, he gets grounded from time to time and loses the rights to possessions for any period of time depending on the crime, I’m not a jaded mother with a blindfold on. I’m just more open and accepting to a lot of things he does because in the grander scheme of things, he is after all just a child, learning his way through life.

To teachers teaching my son – take the time to get to know my child – you are teaching him for an entire year and he spends 1/3 of his day with you – he looks up to you because you are nurturing and encouraging his brain to grow.  He is a beautiful boy who is extremely sensitive and loving and once he gets to know you back, you better believe he will do anything in his power to impress you and win your approval.  He is a normal little boy, simply looking for the affirmation that he is liked. Imagine how tough his short life has been with all of the above, the struggles he has overcome with and without help and now tell me you don’t think he is an amazing kid who deserves a little extra time to help him process what other kids can do without assistance. There is no need for you to worry about him being so little or looking so tired – I’ve got that covered, I’m worrying enough for an entire village about his food intake and sleep he gets.  Focus rather on where your responsibility lies – teaching my child.  Teach him the things he needs to know to get by in life, teach him about kindness from strangers, and teach him that he can achieve whatever he puts his mind to.

And if you can’t accept that this is just the way it is with us, then you don’t deserve to have my friendship because despite the hard exterior bravado I put on, believe you me, I’m a kind-hearted, caring and giving person who would absolutely give up my entire world for a child who needs something – and my childrens' needs most certainly factor in long before my need for your friendship.