Tuesday, 29 January 2013

Vulnerable Two's

It's far more common to describe Two as Terrible, but right now, Two feels very vulnerable.  

Chris and I have been finding these last few days really hard and we've spent time quietly talking through what's coming next, feeling worried, and we've also spent time crying.  We've always known this time was coming; two is the age where Adam begins having his developmental reviews - at the moment he's 22 months so he's not quite there yet, but very nearly.  Two is the time where doctors and therapists have stopped saying things like, "Give him time, he'll catch up." or, "He's a boy, boys can sometimes be a bit lazy," or "We don't yet know what he will be able to do, time will tell."  

Two is the time where doctors and therapists have started saying, "There are now significant concerns with Adam's language development;" and, "Is it just his hearing holding him back or is there something cognitive that is preventing him from learning language?" and, "We need to put Adam forward for the full developmental review.  This will involve all of his existing therapists along with a few others like a psychologist;" and, "Adam's hearing could change from day to day because of the dyssynchrony, and it is also possible that his eyesight could change from day to day because of the nystagmus;"  and, "When we do Adam's two-year assessment, you have to start understanding that, unfortunately, he is very likely to fail most of it."

These are all phrases that we've heard in the last four days.

There are times when Adam says something that excites and encourages us - like his interactions with his story books that I described in the last post.  There are other times when I realize how very delayed he is.  I watch a lovely girl at college who is two months younger than him saying to her mother, "WANT to PLAY!"  while Adam says, "tan-oo" (thank you) and "uh-bye!" (drink).  This girl, when her mother says, "Look!  There's Adam!  Can you say 'Adam'?" replies, "Adam! Adam! Adam!"  If I ask Adam to say his name, I get a blank look.  If I make the sign for "mother" (tapping three fingers on top of my head) and say, "Mummy"  Adam responds by tapping his belly and saying "Buh-bee" (baby).  There is some comprehension there, in certain instances he will attempt to mimic.  But now is the time when the difference between my son and other's children is becoming very obvious.

Until November, if I counted very carefully, and included his personal words that consistently mean the same thing even if they're nonsense (like 'uh-bye' for drink) then I could get to a vocabulary of eleven words.  At the time, Adam should have been able to speak between 6-20 words so he was about in the middle of his age range for language.  Now, by 22 months, he should be approaching a vocabulary of fifty words.  If I try very carefully, I can get to 6-8 words - yes, he's gone backwards, not forwards.  The storybook interactions are the exception, not the rule.

There are other things that we are noticing and that others are also noticing.  We have decided to start recording observations in a daily journal because some of these things could be very minor areas in which Adam is simply developing, exploring new things and learning new skills.  They could indicate disabilities that we already know he has.  But yesterday, Adam's health visitor soberly told me that it is possible they could indicate other conditions that may be starting to appear.  Here are some examples:

1)  On bad days, Adam now has near constant tantrums.  These involve throwing himself onto the floor, thrashing around, kicking, screaming, arching backwards in a U-shape, banging his head (generally on the padded back of his high chair or banging it on us if we're trying to hold him).  On a bad day, he can be tantruming for hours - sometimes the tantrums continue for the entire day and nothing can soothe him for more than moments.

2)  Adam rarely, if ever, makes eye contact.  

3)  Over the last fortnight, Adam has begun regularly walking on his tip-toes.

There are of course easy explanations - the tantrums could be normal toddler behaviour - he may be increasingly frustrated at his inability to communicate, he may be frustrated that both his sight and his hearing can change from day to day.  The lack of eye contact could be because he is visually impaired.  The walking on tip-toes could be that he is experimenting with walking and learning new skills.  But all three of these are also behaviours common in children with autism.  

Both Chris and I have noticed that, on occasion, Adam will blink a few times very rapidly - but the type of blinking that involves squeezing his eyes together almost comically so that his whole face screws up and he will shake his head in a motion that almost looks like he's twitching.  Is this a time when his vision has suddenly changed, come into or gone out of focus?  Or is he just playing?

I've thought that a few times, it seemed that Adam was blanking out for a couple of seconds and appearing to freeze before "coming back".  At first, I dismissed these as my imagination but now, I'm starting to wonder - is it my imagination?  Or is this a petit-mal seizure?  While infected with GBS Meningitis, Adam was having near constant seizures in NICU and for those three weeks, he was on very strong anti-seizure medication.  These stopped and so the medication was withdrawn before he left hospital and no one, ourselves included, have seen any reason to reinstate it.  But are these instances of "blanking out" my imagination?  Or does he have epilepsy as was predicted in NICU?

All of this is in addition to his near constant breathing problems, which I believe to be asthma yet which one of the G.P's at the surgery still believes is simply viral-induced wheezes.  This despite the fact that, this past Friday, he had what I believe to be his first sudden asthma attack.  We had been at Stepping Stones to have his new hearing aids fitted and afterwards, I put Adam into the car symptom free.  About ten minutes later, as we were driving, he started to cough, then to wheeze, then to gasp for breath.  I pulled over to give him inhalers by the side of the road which relieved the symptoms.  How is this anything other than asthma?  We have already been told that maternal asthma is the most likely to be passed on and I have severe, chronic asthma - I have had all my life.  Adam has had breathing problems from the age of six months - not counting his three weeks in NICU on a ventilator of course.

The other thing about this is that his Speech and Language therapist has said that children who feel ill usually go off their food about two weeks before an illness and for about two weeks after an illness.  For a child like Adam who already has a known behavioural eating disorder, and who is constantly lurching from one illness to another, this makes feeding him even more of a nightmare than it already is.  So my next step is seeing one of the other doctors at the surgery, who we have a great deal of time for, to ask for a referral to a chest consultant (specialist).  If he agrees to this, and I understand from my health visitor that we have the right to ask for a referral if we wish it, this would bring Adam's total consultants to seven.

Yesterday, it was just all too much for me.  I was speaking to our health visitor about Adam's lungs and as she was encouraging me to seek this referral, I broke down in tears saying I just didn't feel I had the strength to keep fighting for Adam on so many fronts.  If it was just one thing, or maybe two, we could cope with that.  But at minimum, it is known that Adam is hearing impaired, visually impaired, has an eating disorder, has breathing problems, has developmental issues and language delays...and it seems increasingly possible that more are on the way.  Wendy, being the lovely person that she is, dropped everything and promised to be with me in twenty minutes - and she was.  The first thing she did was just to give me a hug and tell me she was there for us, to be an advocate for us.  This made me cry all over again.

As we spent the afternoon together, she took me through all of Adam's known issues and explained the next steps to me - CAF forms, a TAC meeting, developmental reviews, educational assessments...you get the idea.  Then she said she hadn't said this to me before, but that she had always known this time would be the most difficult for us.  She knew what was coming and she knew that although, on the one hand, there is the potential that we could finally receive some conclusive answers to just how impaired Adam is and having conclusive answers could be a relief.  But on the other hand, the time is coming very soon when it will no longer be possible to give Adam "latitude" for just taking his time and when the developmental labels will be confirmed.  She told me that in her opinion, I am very strong to be coping with all of this while also training for the ordained ministry but she questioned whether or not I should actually be doing so - whether or not it was simply too much for me to handle.

And she's right, it's not easy commuting seventy miles to college with Adam in tow, staying for three days and coming home again; dealing with the academic requirements of studying for an MTh, while also juggling all of Adam's appointments and needs.  There are days when it would be so much easier just to curl up in a ball in the corner and give up - yesterday was one of those days.  But today, I am back at college and Adam is currently napping behind me in his pram.  

What will life look like in the future?  What will Adam be able to do?  What won't he be able to do?  We don't know yet but the picture is going to become much clearer over the next six to eight months...whether we like it or not.  Adam is still Adam - so often cheerful, cheeky, full of life and the absolute centre of our world.  We adore him and we will do everything and anything we need to do in order to make sure he has the care he needs.  But the path isn't getting easier.

Two is Terrible and Two is also very, very vulnerable.


  1. Love and prayers Charlotte - you ARE a strong woman, amazingly so. God bless you & give you strength for the continuing journey xxx

  2. Prayers for you and your family

  3. Am I A Theologian?29 January 2013 at 20:04

    Love and prayers Charlotte - you ARE a strong woman, amazingly so. God bless you & give you strength for the continuing journey xxx

  4. Thank you for sharing your honest thoughts and feelings again Charlotte. I will be praying for you and Chris and Adam. I can't imagine everything you are going through. My Mom has always reminded me that God won't give me more than I can handle, she just doesn't know what His measuring stick is. If you have specific prayer requests, please don't hesitate to tell us. Hugs.

  5. Thank you Krista, I appreciate your kindness. Pease do pray for us, for Adam's development and healing and for strength for us to help him receive the care he needs and the strength to keep fighting and keep loving. x

  6. Oh Charlotte, sorry this is such a hard time. Vulnerable hits the nail on the head, both for you and Chris and Adam. In the summer when we got our CP diagnosis and they started requesting tests, and then we got the tube it was like a slap in the face knowing we were in the for the (very) long haul.I knew there was something(s) to some degrees, but facing up to it was hard, still is hard to some degrees. We had CAFs when Alice was teeny tiny and last year; both were incredibly productive and a relief to have everyone on the same page afterwards and finding as much support as wanted/needed. It help iron out lots of creases, any misconceptions and uncover any pitfalls! That said, as you are feeling now there is an emotional baggage for the parent. It is so hard watching and waiting, is it a phase, is it a pointer to something. In terms of work, college I'd take it one day at a time and be gentle on yourself. I'm not job-hunting at present precisely because I don't yet know what the next year holds for us either; my own decision entirely and it differs from family to family. You've always sounded so strong-might sound empty words now when you just want everything to be ok. but it will get you through. Glad you've got support around you, and hoping the next stretch is a little easier for you all. xx

  7. Thank you so much Amy, I really really appreciate your message and support. I think (in turn) you hit the nail on the head when you mentioned facing up to being in this for the long haul. For such a long time there was hope that maybe Adam could beat at least some of the odds and where, in certain areas, things seemed to be improving that this period when we're facing and accepting that things aren't improving is so hard. It's facing up to the fact that this is a long haul situation. Having diagnosis and the labels that go with them will in some ways provide us with a lot of helpful clarity and end much of the uncertainty - so in that way, they're good. Yet in the other way, those diagnosis do have the twist of confirming impairments that we so hoped he would grow out of, because we were told this was a possibility. His hearing could have corrected itself through his auditory nerves maturing, his eyesight could have corrected itself though similar means. But it's increasingly likely that, short of a miracle, this just isn't happening. That's hard. We have a TAC meeting at the house tomorrow (the CAF has been filled in as a first step) and hopefully it will be helpful rather than discouraging. Thank you for your support and empathy, believe me, I know my words often demonstrate strength when they're written here, but I still spend a lot of time crying, worrying or feeling very vulnerable - especially right now. x

  8. Aw. Drats, I did leave you a comment and just popped back to check and its been and got swallowed in cyber space. Just wanted to say big hugs and stay strong xx

  9. Im sorry I never saw your first comment Christina, its frustrating when things get lost in cyber space. Thank you for your kindness, all hugs gratefully received. X

  10. Also sending you big hugs and lots of love. xx I have been wary of comming too close this week as house ful of cough bug germs! I got it now thanks Dan and Georgex will be praying for you for wisdom and disernment and just for hanging on in there! katie

  11. Thank you Katie, thats very sweet of you and much appreciated. I must confess to not noticing you keeping your distance but I've been in such a fog all week from lack of sleep that you could have been wandering around with a chicken on your shoulder and I wouldnt have noticed!

  12. What can anyone say, this is really tough but you are both a huge inspiration to so many people and I am sure your willingness to share will continue to be a massive blessing to others who face a similar road. Jess XXX

  13. Thank you Jess, this is very kind. I do hope our experiences may help someone else, I know how much I would have valued knowing I wasnt alone in experiencing GBS back in those dark days in NICU. Hopefully our continuing journey may help someone else. X

  14. Oh goodness, I don't know what to say, Charlotte... You have so much to cope with. There but for the grace of God...

    I'm not religious but I'll be saying a few prayers tonight, and Adam and yourself will be amongst them xx

  15. Thank you so much Christina, i suspect we'll all be saying prayers tonight whatever our beliefs or none, and thank you for including Adam and our family in yours. X

  16. It's so challenging, and inspiring, and humbling, to read all that you've shared here. It's a real privilege to share life at college with you AND Adam (as well as Chris, sometimes!). I can only empathise with you in the smallest way, but as well as seeing the struggles you have, I'm constantly taken aback by the sheer breadth and force of the love you show for Adam.

    Whenever you're here, please do ask if there's ever anything that I can do to help....

  17. Thank you so much Haydon, you made me cry with your kindness - not that this is hugely difficult at the moment! I am equally continually amazed by the battle you face every day to keep studying while also battling against the pain and obstacles you face with CP. I do look forward to the day I hear your voice echoing across the corridor at 4am as Adam performs: "The night has passed, the day lies open before us....." ;-) Seriously though, thank you for your kindness and support, I very much appreciate it.


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