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7 years ago our lives changed. Our beautiful little boy arrived and life would never be the same again. Now we love our boy unconditionally but if we had been told before that day what the future held i would have committed myself to an asylum there & then as the only way to describe life now is structured chaos!
See, little did we know our little boy was slightly different from the other babies born that day. He had 10 fingers 10 toes and looked every bit perfect. He still is. But he has problems that, despite having no physical sign, affect every part of every day life. Not just for him but for us, for his siblings, for family, for everyone that comes into contact with him and when he lets rip everyone within earshot knows about it.
He expresses himself in a way that leaves no doubt as to his frame of mind! He has several issues but his problems are something that will ring true for every parent of a child with additional needs regardless of the specific medical label. He has sensory problems- sudden noises are petrifying, some textures are unbearable, change is unthinkable, touch and pain are registered very differently, speech is an additional form of communication but by no means his preferred one.
He has behavioral problems- sensory overload means a meltdown isn’t far behind. This could be from something as simple as a different bowl for breakfast or putting on socks, being nudged in a queue or simply too many people in his vicinity. Things that families do- like funfairs, carnival, bonfire & fireworks, even a trip to a shopping center or supermarket are a big no. Siblings try to understand and they love him dearly. His reaction to these things? Floor- cover ears- scream- shake- roll and thrash around- head bang floor- bite and/or hit himself. What do we do? The best we can. As thats all we can do. Remove the problem if possible or if not remove him from the situation, sit next to him and repeat simple calming instruction if hes in no danger. Use too many words and the craziness escalates to a whole other level and then its batten down the hatches and restrain him as no one wants to be in the firing line- he’s like a little cyclone, little, spinning but jeez the trail of destruction is immense!
Other peoples reaction to this? Varied. Those that know know. But most? At best rude. At worst? Unrepeatable. And yep we try to explain and stay calm but some people are so rude, arrogant and ignorant they get told in no uncertain terms where to put their opinion! Our boy has significant anxiety issues when away from family. He didnt speak until 3. He has tics, fine motor skill issues, little sense of danger and he’s a runner- think greyhound out of a trap- the boy has enough speed and stamina to make olympic athletes jealous. Learning difficulties- he struggles to read nursery grade material and writing is a no. Nocturnal incontinance- he has no idea he’s even wet at night, carries on sleeping oblivious. Now, its not an inconvenience to have to change continance aids several times a night- we have several children so bare bums n nappies are nothing new. But having to change a 7 year old when his younger siblings are dry? Thats a reminder every night of the battles your own child- that tiny perfect baby- faces every day. And that’s tough.
But certain areas and he’s showing us what to do. Technology and visual based work and theres no doubting his talent! Social life – remind us again what that entails?? See, we cant simply get a baby sitter. Nor can we leave him in a relatives care- although they would happily help out. He cant cope with that. And if we get an invite for us all as a family we have to work out if its suitable for his needs- noise, light, people, food, dress code. Normally its not. And hey- the last thing anyone wants is a mega meltdown! Right down to his daddy missing the births of his siblings. Because he needs his daddy if mummy cant be there. And his needs come before ours. Every time.
Sometimes his boundaries have to pushed for the sake of the other children to maintain some normality. And because we know that we wont always be there to guide him for his whole life. But for now, Military style planning (and copius coffee and nurofen after they go to sleep) occurs in these situations. Boot camp has nothing on the planning that goes into a day out for us! And if you see him naked dont panic- we wont. Just carry on and trust that in the least distressing way the removed garments will go back on. Eventually! Families like ours dont want pity. We want people to understand that every parent has worries and difficulties with their kids. For us, they’re just a different set of worries. And trust us when we say we got our stuff covered- we deal with what appears to be extreme behaviour every day. We can handle it! If you want to help watch our shopping while we tend to our babies that were born dancing to a different tune. And thats just it- our kids are different NOT less.
They’re beautiful, amazing and have personalities just like every other child. They just need a little less ignorance and a little more tolerance. If you read this far well done. when you put your own child to bed tonight be thankful not to have a 2 hour battle of tears, hitting, spitting. When they take ages getting dressed for school be thankful they do dress themselves and not require 2 adults to dress them and carry them under extreme and aggressive protest to school. And appreciate every milestone your child hits- we sure as hell do.
Every child is special in their own way.
Posted by We Are South Devon on behalf of the family(after a discussion we had with them following someone complaining on Spotted Torquay about the behaviour of some children in Torbay. Thanks for sharing this with us. A little reminder not to judge)
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