Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

Hugh's First Packed Lunch


Mmmmm ... luminous green mush!
Hugh took his first ever packed lunch to school yesterday – smoked salmon, cream cheese, broccoli, cauliflower and spinach, - a little bit fancier than his big brother Sean’s usual cucumber sandwiches and a lot more fiddly.  Blended to a pureed consistency it looked radioactive with its luminous green glow but I felt so proud being able to send in ‘real’ food.

You see, for the last three years Hugh has been fed by a tube.  Initially an NG (naso-gastric)tube – a tube that passed up his nose, down his oesophagus to his stomach, then via a gastrosotomy (a surgical opening into the stomach via the abdomen) through a device known as a PEG (Percutaneous endoscopic gastrostomy) and now a mini button.  Prior to tube feeding, Hugh had fed orally.  At 14 months I was still struggling to wean him and he was mostly bottle fed, though he managed some purees.  Apart from severe reflux issues early on, which were resolved with a cocktail of drugs and changing his milk formula, he was managing to gain weight adequately so although his feeding wasn’t really age appropriate we weren’t overly concerned. 

L-R: The NG, The G-Tube, the button (photo credit for G tube)

That all changed however, when a long and dangerous run of seizures left Hugh unable to swallow.  In fact the seizures, and drugs used to stop them, had a devastating effect, robbing him of his ability to roll, to lift his head, even to smile.  While he recovered on the high dependency unit, he was fed through an NG tube and as time passed and he started to improve enough that coming home looked likely, we were trained in how to feed him using the tube.  I was devastated.  I was under no illusions that Hugh was developing typically, but this tube, taped to the side of his face, marked him out as different.  Tube feeding felt like such a step backwards in a world where our steps forward were so few anyway.  I’d previously sat waiting for hospital appointments and seen posters offering support to tube-feeding families and thought ‘at least we don’t have to deal with that’.  I was assured though that it was only a temporary measure while he recovered from the effects of the seizures.  I remember a speech and language therapist coming to see us on the ward before we were discharged (speech and language therapists also deal with feeding and swallowing issues as well as communication) and discussing surgical options for tube feeding.  I looked at her aghast, disgusted even, explaining that we didn’t need to think about that, as his tube was only a temporary measure and he’d be eating orally by the end of September.  That was in July 2011! (You can read a little bit more about this time here: Six months on from an epilepsy diagnosis)

As time went on, I began to see the benefits of the tube.  Instead of being admitted to hospital every time he got ill, I could keep him fed or at least hydrated at home.  Previously, any bug – coughs, colds, sickness and diarrhoea – would leave Hugh too tired and weak to eat or drink.  It would be impossible to get fluid or medication into him and he’d invariably end up having lots of seizures and become dehydrated.  The tube made managing that a bit easier.  But the down side was his poor little face, my God, it was red raw.  He’d pull the tube out at all hours of the day and night ripping the surgical tape from his face as he did so.  He wore socks on his hands constantly to try to stop him grabbing it and I changed the tape daily as he would try to rub it off with the back of his sock-covered hand.  Re-passing the tube was a nightmare, during the day the community nurse would come and do it, but at night we’d have to take him to hospital.  Often parents are trained to pass tubes themselves but we were advised that because Hugh was so difficult to pass a tube on and fought it so much that it was safer to get a nurse to do it.  I would have to pin him down while he screamed, held his breath and went blue in pain and anger.  Invariably they’d draw blood.  We’ve since discovered that his adenoids were huge and his tonsils almost touching so it’s no wonder it was so difficult and painful.  At that time though it was necessary but I felt so evil pinning him down while he screamed and cried.  Poor Sean witnessed it once; he was only two at the time.  He sobbed for ages and was really distrustful of any nurses that came to the house for a long time after that.

I tried my hardest to wean Hugh but seizures and illness made it impossible, so a year after having the NG tube, I was begging for a gastrostomy – at least the skin on his face could recover (by now the stigma of a tube was the least of my concerns) and we wouldn’t have to fight him so frequently to re-pass the tube.  He’d also get to use his hands again – they could come out of the socks!

Cauliflower cheese anyone?  Anyone?
Since then we’ve persevered with the weaning.  There have been peaks and troughs – times when he’s managed a full days worth of food orally and times when he struggles to swallow at all.  Like most areas of Hugh’s life, progress moves at a glacial pace.  Being on the ketogenic diet (for hisepilepsy) makes it all slightly more complicated because he has to have a very specific ratio of fat and carbohydrate, plus everything needs to be blended to a purée consistency.  But we’ve persevered, invested in a high tech blender and fancy digital scales and I make batches of meals for him and freeze them.  Sometimes he’ll manage quite a bit, other times it’s just a mouthful or two before he gags or gets tired. When he comes home from school he’s usually far too tired so lately weekends and holidays have been the only times I’ve been able to really pursue this.

However, yesterday, the speech and language therapist assessed his feeding at school and has given the green light to say that Hugh is safe to have tasters of food at school now too.  This is fantastic news and in Hugh terms a real leap in progress.  From now on, when he’s well enough, he’ll be having small amounts of food at lunch time, just little tasters but hopefully this will progress to larger quantities.  Hugh used to always be so motivated by food – when he was little, we always seen the most intentional communication around meal times (i.e. shouting to mean “hurry up mum give me some more”) so I’m really hoping that it will help in this area too.  The routine of being able to do this regularly at a set time every day is bound to help him too.


So while at first glance sending a packed lunch into school for a 4 year old child doesn’t seem such a big deal, for us it’s a huge achievement and I hope that it’s the start of many more small steps in the right direction.

What's for pudding?


Ethans Escapades

Comments

  1. This is fantastic news, how fantastic that he can take a packed lunch into school. I really feel your pain about having to pin your son down, I have had to do this a few times and it's a real heartbreaker. I know this is going to be a slow process for you but its a good step forward. I have also learnt something from this post, there is a man at BounceAbility that has socks on his hands and I never knew the reason why! #SSAmazingAchievements

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  2. What a tough time you have been through. What a brilliant day and such an achievement!

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  3. Oh my, this is an amazingly big step for you all. I hope this will lead to more new tastes for him. Lovely post. Thanks for linking up with #SSAmazingAchievements

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  4. Hi Lovelies, thanks for all your comments. Ah yes Jane - socks on your hands - much more effective than gloves or mittens :D

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