FAQs

I was reading Little Mamma said‘s blog post about being asked questions about her son’s condition – well actually in this case she was asked outright ‘what’s wrong with him?’

I’ve been asked that about Sam. It was worse when he had his NG tube in because that was stuck on his face and impossible not to be seen. Now it is really when we are out and pump feeding him or when people (who we may know a little, or don’t know at all) stop and chat to us and notice something might be a bit different with Samuel.

I  know people don’t mean any harm or offense. We, as humans, are just terribly flawed when it comes to putting our foot in it. We say things without thinking. People essentially do mean well. If you are reading this thinking that you might have asked a daft question, please please don’t worry about it. But I do wonder though whether I should have a list ready of frequently asked questions to give to people before they come out with their questions.

An example could be, in no particular order:

Question/Comment: Gosh, isn’t he a big boy? My cousin has just had a big baby too. (This is said a lot, but it is because I have to hold Samuel as if he was a little baby because he is unable to support his own head and neck)  Answer: No, not really, he’s just right length and weight actually. He was only 6lb 4oz when he was born.

Question/Comment: Was he a premature baby? How early was he? Answer: He was full term, well one week short of being bang on full term.

Question/Comment: What’s that? (Said after spotting him being gastrostomy fed) Answer: He is having a feed via his gastrostomy button, it goes straight into his tummy.

Question/Comment: Oh, how bizarre (looking very confused), can’t he eat normally then? Answer: He hasn’t got a reliable swallow so all his feed and medicines go through his gastrostomy button.

Question/Comment: Was very sorry to hear about your baby. We’ve been thinking about you a lot but didn’t want to get in touch as didn’t want to bother you. Answer: No need to feel sorry for us, we have our child that we’ve always wanted and who we love very much. He has brought so much joy into our lives.

Question/Comment: What’s wrong with him?  Answer: He has a rare condition that affects the brain, causes severe epilepsy and global development delay. (It’s a funny question because with strangers or people I don’t know very well, how much detail do I go into? So I just mention the epilepsy and special needs in the hope that is enough to satisfy interest but not boring or scaring them with more info than perhaps they needed!)

Question/Comment: Will he grow out of it? Answer: No, unfortunately not.

Question/Comment: Would an operation help? Can they cure his condition. Answer: No unfortunately not. Samuel is missing a part of his brain & has lissencephaly which refers to the smoothness of his brain. This cannot be repaired or cured.

Question/Comment: I don’t think he likes me/is interested in what’s going on/he looks bored. (This is normally said when someone tries to interact with Sam, but Sam just ignores them)  Answer: (I’m never quite sure what to say here) He isn’t ignoring you really, he has special needs so doesn’t realise that you are chatting to him.

Question/Comment: I heard you were visiting the hospice. I didn’t realise things were that bad. Answer: There are a lot of unknowns with Sam’s condition, particularly as it is very rare. But we do know that he has a life limiting condition and that not only means that he is extremely limited in what he will be able to do, it does also mean that how long we have to enjoy him is very limited too. The hospice offers us great emotional and practical support and respite. They also have fantastic facilities and are great at looking after children like Samuel.

Question/Comment: So will you be having more children? Or when do you think you’ll start trying again for another one? Answer: Err, it’s not quite that straightforward and Sam is only 15 months so we will take our time.
Question/Comment: Does he sleep ok at night? Do you have to stay up with him all  night? Do you get to sleep? Answer: We are lucky in that Sam has a drug called Chloral Hydrate that helps him sleep at night. Doesn’t guarantee he will sleep straight through but helps him settle and gives him more of a night and day. He’s on a feeding pump for 10 hours overnight so is bound to do a massive wee nappy which can disturb him so often get up to do one nappy at night. Much like a lot of ‘normal’ parents I imagine.

Question/Comment: You are very brave. I don’t think my husband and I could cope with a disabled/special needs child.  Answer: Yes you could, you are a parent, you love your child and would do anything for them. You would move heaven and earth to help them. We are just like any other good parents who love their child.

Question/Comment: Is it ok to give him a cuddle? Do I need to hold him a special way? I wont hurt him will I? Answer: Cuddling Sam is just like cuddling a big baby. Just hold him close and if he has a seizure then just hold him tight.

Question/Comment: Oh is he having a little laugh? Answer: No, unfortunately he’s just about to have a seizure.

Maybe I should just give them a link to my blog post about how damn perfect my boy is.

Other random comments we get:

  • Oh my goodness aren’t his eyelashes amazing, why do boys always get stunning eyelashes?!
  • You would never tell anything was wrong with him when he is calm. He just looks so perfect.
  • My friends step-son has Downs Syndrome.
  • Could I have a cuddle with Sam please as I’ve had a stressful day and need a Samuel cuddle to relax me.
  • (Stranger looking at him snoozing or calm in his buggy, normally said when we are in a lift) Ah, sometimes you just want to keep them little like that. Enjoy the peace while you can as they grow up quick and will be running around causing havoc in no time. (My dream would be for Sam to be running around causing havoc!)
But one of my favourite things said to me recently by a stranger has to be, ‘I have to tell you that I think your baby is one of the most beautiful little creatures I’ve ever seen’.
If this post sounds all too familier to you, Kate from The life and Times of Team Kitchen blog wrote a great poem called Staring. Pop over and have a nosey.
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13 thoughts on “FAQs

  1. Again, so well written. Thanks for the answers! I have to confess, I’m one of those people who often manages to put her foot in it – maybe it’s because so often I’m trying very hard not to?! Even though I know saying ‘whats wrong with him’ is just terrible, it’s likely that could slip out of my mouth before I even realised… so I’d like to apologise now to everyone I’ve ever offended by mistake….. thank you for being so calm and matter-of-fact about this – it’s the kind of attitude which can help everyone.

    • The funny thing you know Steph, is in a way it is ok to ask. I think a lot of parents would prefer people asked then stared. But for some reason the phrase ‘what’s wrong with him?’ gives me chills. I don’t know why. I think it is just hard explaining it to strangers, how much info do they really need or indeed want to know? But don’t worry about it, please don’t. Hope my post hasn’t made you feel bad. x

  2. Yep. Know exactly where you are coming from. We get most of those comments.
    no one bar nurses and close family and 2 friends ever wants a Nate cuddle 😦
    Went to a visual Impairment sensory group today, had to park far away as non disabled badge cars had taken all the disabled spaces and others were full and stood trying to get Nate out of his SN chair into the car. A woman sat in the car next to mine stared at Nate to entire time 😦 xxx

    • Oh that does make me cross. I know with Sam it will so become very evident that something is different before too long and I’ve told his dad that we are just going to have to be prepared for people looking, especially if he’s noisy or has a seizure. Just expect it, so don’t be surprised when it happens. Easier said then done. There is a little boy who goes to the hospice who has Epidermolysis Bullosa where his skin blisters and looks (and is) very sore. They can’t go out very much because people stare and even make comments in the parents hearing that the mum and dad must have burned the child or that he has some contagious disease and not to let their child go near him. He is three now and very bright boy and knows they are staring at him. Makes me so cross. x

  3. Rachel, that’s horrible 😦 (hugs) and I’ll give Nate a HUGE cuddle if/when I see him. and that poor boy at the hospice Zoe. :(. Sometimes I think H is lucky because he doesn’t realise when people are staring.

    Nice to be inspiring, by the way!

    I liked your comment about when he is seeping! I get that ALL the time. And I’m dying to say – if only he’d run around and make noise and shout and fight with his brother!

  4. Pingback: Good Questions, Bad Questions. « Pressure Support

  5. Pingback: 27-02-12 Love Special Needs Weekly Showcase | Love All Blogs

  6. what a great post – again! (damn, you are a good writer!)

    some of the questions you are asked and the answers you give resonate deeply with me: the ” we’ve been thinking about you but didn’t want to get in touch” – is it out of fear or guilt that they don’t get in touch?; the hospice which is so, so much more than a place for end of life care; the bravery when actually this is all that we know and we *would* do anything for our child.

    thank you for sharing this post
    x

  7. What a wonderful and informative post. What resonates with me is your calm acceptance of your situation. Your posts are factual and written in such a way that I want to read more. I know that it must be tough, how can it not be when it is your precious child. He is such a sweetie and I would LOVE to give him lot of cuddles.

  8. Hi there, thank you so much for sharing your experiences. My son was born with severe epilepsy anddiagnosed with Ohtahara syndrome. He has justt turned 7 months yesterday and its been a real rollercoaster. To date we have no answers but test results are still pending for the ARX gene and our neuro expects this might show something. Your explanation of the gene is the best I’ve found so far using Google!

  9. Thank you for your blog. I have been searching all over for another family with a baby like ours. The other blogs I have found the kids had head and trunk control and weren’t as severe as William our now 13 month old. I would love to email with you if that’s ok to find out about medical equipment and just to chat. It is nice to know that we aren’t alone in our struggles. my email is catherinelmcclain@hotmail.com

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