The dreaded question

Published May 22, 2012 by swanfreddie

I went to the park today with a friend & her two children. One 3.5 years & one just turned 2. As usual when i’m around other children Freddies age I end up feeling a bit down. This little girl was talking, playing, laughing, climbing & running around. Everything I long for Freddie to  do, who on the other hand was sat silently in his pushchair. I did try to sit Freddie on a baby swing but it’s not supportive enough so he went back in his chair.
Situations like this are really hard to deal with. Harder than anybody not in my situation could imagine. It’s an eye opener. Your taken out of your own little world and made to realise the extend of your child’s delays. It’s pretty heartbreaking.

While we were there the dreaded question was asked “So whats actually wrong with Freddie?” My response went something along the lines of…

“O well erm hes erm hes got this eerrmmmm… well it’s a undiagnosed syndrome that well eerrr it causes him to have, well it means that he has erm developmental delay and well erm hes got feeding issues, and er hes partially tube fed. Its just a… well it’s just a syndrome thats has no name. But hes fine…hes just fine.”
I then rapidly change the subject whilst being really annoyed with myself for not explaining it properly.

I don’t dread the question because I don’t want to discuss Freddie my problem is how do I explain it properly? Where do I even begin? Some may say it’s nobody elses business, but I feel that the more people I can explain Freddie to the more people who will gain an understanding of him and other children with special needs.

If I tried to explain Freddie properly it could be a bit lengthy…

“Well basically Freddie has a genetic syndrome. He was born with failure to thrive and low set ears, this is an indicator of organ problems, particularly the kidneys, which luckily for now seem fine. He also has dysmorphic features, including Micrognathia, Microcephaly, Trigonocephaly/metopic suture, which may require major surgery soon, adducted thumb, which too is going to require surgery, unusual toes & fingers, high arched pallete & a retro position epiglottis,  he also has a gastrostomy button that’s hes partially fed through & takes his 8 doses of medicines through, he has a plagiocephaly, an atrial heart defect, a stridor, a tracheal tug, astigmatism, long sightedness, Esotropia, severe reflux & milk protein intolerance, sleep apnea and has developed epilepsy, they are not entirely sure what type, he tends to jerk alot, has staring spells & has a few shaky moments through out the day, but it’s not categoric of any particular type of epilepsy.. I think that’s everything. O no wait he also has severe global developmental delay. Meaning he is behind with his development & has a low understanding of the world & what he is supposed to do. Hes not walking or talking or crawling or playing as he should. Hes been stuck at the 3-6month age range for about a year now. With alot of help from physios, occupational therapists & speech & language therapists we are hoping to eventually make steps forwards with him. I would like to be able to tell you the name for this syndrome. Unfortunately I can’t, theres no name. The doctors don’t know what it is, for now it’s a bit of a medical mystery. I hope this answered your question?”

To be honest i’m not sure theres ever going to an easy answer to such a question. I’ve been asked it alot before and I never find it any easier to answer. Like i’ve said it’s not that I don’t want to talk about Freddie but it’s not really the easiest thing to discuss. I’d never like anybody to think they can’t ask me about Freddie & I thank all the people who have asked for showing an interest but there really is no short, simple answer to that question.


2 comments on “The dreaded question

  • I know what you mean. I find it difficult because I think people, when they first meet Samuel, aren’t always aware that there is a condition. People probably just think he’s a big baby in an odd looking buggy! But people do ask. People who we vaguely know. Neighbours or friends of friends who are curious.

    We have a diagnosis as you know, but the name of it means nothing to people (even his GP), so all I say is, ‘Samuel has a rare condition which causes global development delay and development-wise is just like a little baby, maybe 6 weeks old. His condition causes severe epilepsy where he has daily seizures and is fed through a tube through his tummy and takes nothing orally.’ They always ask for the conditions name, I tell them ‘ARX’ and they shrug, look surprised and say they’ve never heard of it.

    Don’t see any use of over complicating it and giving them more than what is needed. What I tell them covers the essentials. I don’t add on that he has a shortened life span, is there any point if they are just a vague acquaintance. I’ve been asked if he will grow out of it and to that I just answer ‘no’. I’ve learned over time that there is no need to over complicate it.

    Saying all that, it still is bloody hard though isn’t it?! xxx

  • As you may have seen from my own blogposts I know exactly where you are coming from and like you I believe in answering peoples questions (so long as they are genuine) as I think it brings us a step closer to acceptance and integration of children/people with different needs. It sounds easy but we know how hard it is both on a practical and emotional level. I recently discussed this with someone and they said ‘why can’t you just say undiagnosed and leave it at that’ but I have found from experience that that just promotes more questions along the lines of ‘what do you mean undiagnosed’. I would still like to see SWAN being a recognised term not that it would stop the questions but at least in years to come people might be able to say ‘oh yes I have heard of that’ means the same as undiagnosed but not so open ended.

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