I knew going into both of my major diagnostic appointments what the outcome would be.
The first time with Ehlers Danlos, I was certain it was what I had. But, I’d been told by so many other doctors that I was making it up, or faking it, that I’d began to believe them, somewhere in the dark parts of my brain.
Having a geneticist talk to me, look me over and declare it the easiest diagnosis he’s ever made, it was a shock. A relief too, but a shock.
Up until you hear the words declaring you diagnosed; in the back of your mind sits the fear that you’re making all this up inside your head. If you tell a person something often enough, for long enough, they’ll start to believe it.
That’s how it went with Isaac’s diagnosis too.
I was pretty sure that Isaac had autism – but in the back of my head was the little voice saying you’re reading too much into these behaviours. It’s all in your head.
We got his official diagnosis today. He has autism and I’m not shocked.
He wasn’t a straightforward case (unlike his EDS diagnosis), apparently my son has quirks on top of quirks, including masking symptoms and acting normally in some areas, while not in others.
Out of 11 assessed criteria, he met 9 of them. Normally kids are assessed on 12 criteria, but Isaac wasn’t assessed on impairment in the ability to initiate or sustain a conversation because of his age. Not that we get conversations anyway, just repetitive question and answer sessions.
I watched him play today, running around chasing the chooks, playing on his bike, asking obsessively for me to push him on his bike (even during the actual pushing) and the meltdown that ensued when I couldn’t push him anymore. I realised that his behaviours and what I take as normal, they’re really not normal. This is who he is and now I can’t hide behind that voice telling me you’re wrong, surely you’re making this up.
A diagnosis is hard, even when it’s expected.
My diagnosis of Ehlers Danlos was hard, even though I knew it was what I had. Knowing how bad my joints are likely to be in 10 years makes me want to put my fingers in my ears and sing lalalalaaaa a lot. But it doesn’t work like that.
The same deal with Isaac’s autism. He isn’t going to grow out of this and his behaviours are not going to magically disappear overnight, as much as I’d like them to.
The therapists are worried about his anxiety. I’m hoping we can start therapy at ECIS soon, to help him with this, because his anxiety is hard to manage.
It’s all just hard.
But I’m okay. I will be okay.
Email to a friend
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I wish I had some wonderful and wise wisdom to impart, but I don’t. You said it yourself though – You are okay, and you will be ok. You all will x
(((hugs)))
Don’t look too far ahead at this stage, take it one day or one hour at a time until you find your balance again, the overwhelming devouring hugeness of it all can swamp you into anxiety.
Find support groups to meet others for coffee or have phone contact with – you’ll need to have a voice you can hear saying “Yes, we know what you’re going through” it can be such a big help, these little things xxx
I wish you all the best Veronica. May you be strong though and inspire yourself through friends and family to be stronger.
- tork
Oh man, it really sucks no matter how much you expect it. Take it one day at a time and remember to breath…
big hugs
thinking of you..
am here if ya need
((hugs)) glad you have a diagnosis and now you can deal with it
Sorry that the diagnosis was so hard to hear. You are right. It is hard, even when expected. Hope you can get in with the ECIS asap.
I’m lucky – I’ve had ECIS checking in every week for the last couple, waiting for his assessment to be complete, so that they can work out which group he needs to be placed in. I left a message with our teacher there today, I fully expect a call tomorrow and a playgroup organised asap.
Am so glad you have some firm answers, as it gives you a path tofollow.
I’m so grateful for early intervention, as much for how it helps Heidi as for the friendships we all made. We still get together every school holidays with the families from our first year in early intervention. The children are all at different schools now but it is so wonderful to see their friendships continue over the months and years. Even more wonderful is being able to relax and know these other families get it, I don’t need to explain behaviors, I can take a break from advocating for my children. I hope and pray you can find something similar.
Early Intervention were life savers with Amy and I expect the same thing will happen with Isaac.
I’m so grateful for early intervention, as much for how it helps Heidi as for the friendships we all made. We still get together every school holidays with the families from our first year in early intervention. The children are all at different schools now but it is so wonderful to see their friendships continue over the months and years. Even more wonderful is being able to relax and know these other families get it, I don’t need to explain behaviors, I can take a break from advocating for my children. I hope and pray you can find something similar.
Yes you will be okay, because I’ve met you and you are awesome. You will make everything happen to help him … and if you ever need to compare notes, share info or even vent, please feel free to talk to me. xo
Diagnosis is such a double edged sword whether it’s your own or your child’s. There is relief as you say. That official confirmation can bring relief and an end to those voices in the back of your mind that tell you that you are wrong and over-reacting. A weight is lifted. But conversely it is replaced by another weight that takes time to fully comprehend, let alone accept. As a mum, you’ll get there, you’ll find the path to acceptance and then to plan and take the necessary steps. It’s what mum’s do, as there is no alternative when it comes to our kids. But along the way it’s okay to cry and shout and swear at the universe, even mum’s need that, actually, mum’s deserve that release. I hope you can find that place of balance soon. Hugs.
Hugs and love to you all BG Xx
You are so much more than ok.
You know… I hear Australians are weird and actually budget for services. You might actually get some help!! Here’s hoping for great things for Isaac and maybe even a preschool friend someday too!
I think you are an awesome mum and Isaac is going to be ok.
I know, we are weird. I think it’s all that walking upside down we do, it sends the blood to our heads and stuff.
There are excellent support services and funding here. It’s brilliant.
It must be oh so hard but you, darling girl, are oh so strong. I guess if there’s anything good that you can take from this diagnosis happening now it is that it is very early in his life and there will be no delay in accessing services for him. The diagnosis will never go away but by pushing for this now you have done so much for him. Early intervention can be a wonderful thing, truly I know the difference it can make, and I know that you will push and poke and shout to get him every service he can possibly get.
xxx
A diagnosis is a good thing Veronica. Because of it you are going to get the help needed (even if sometimes you might have to fight for it) and Isaac will benefit hugely. Be glad you listened to, and acted upon, that little voice in your head when it kept saying something was wrong because it has given you the opportunity for EI which is going to pay off big time. One day at a time . . . just take it one day at a time.
xox
I’ve said it before, but it warrants being said again.
These kids are lucky to have YOU as their parent. You are aware, and that’s the biggest key to dealing with this.
Yes, diagnosis gets you support for your son.. And you? How are you? When you deal with your own condition it must be incredibly taxing for you .. So sorry about “the news” because no matter how prepared you think you are, the actual is still a shock.
My hub, 62, has suffered many chronic illnesses for over 30 years & we thought we had a handle on the management but when his neurologist diagnosed Parkinson’s Disease as well I wanted to think she got it wrong. Now 3 years down the track, I agree it’s what he has & it’s a bastard of a condition b/c it’s different in everyone … But with acceptance came knowledge .. To give him & me the best quality of life together for as long as we can.
Veronica, you have my admiration for every minute of every day! Xx
I know this must be so hard. But Isaac is lucky, he’s got a great Mama…:) sending hugs…
Oh sweety. *hugs* I know how you feel. xxxxxxxx
I’m relieved for you. I hope that is all right. Labels are hard, but they seem to bring services. I am sorry that you are going to have to expend so much energy advocating, but I am so glad that you are able to advocate and advocate well. And I hope that this sounds the way I mean it, rather than rude and mean.
Thinking of you, Veronica. I don’t pretend to know what you’re going through, but am glad to hear you’re now able to move on and get him the support he needs. Take care of yourself too. As you say, you will be OK, but that doesn’t mean you can’t ask for help when you need a help/time out.
Judging by these comments, you have a lot of support.
I really do admire you. xx
Oh…I must be the last person on the internet to have logged into Twitter and seen this news. Having read this blog for a long time now, I don’t know what to say…I’m not ‘sorry’ to hear about the diagnosis in itself, but I am sorry in the sense that it confirms that there are going to be extra challenges and hard work ahead, to a greater or lesser degree. Only time will tell what those will be.
You’ve had so much more courage, pushing forward and not ignoring your instincts or brushing things under the carpet. As hard as it has been, your courage in facing things head-on now means that Isaac will get the earliest intervention possible and best long-term outcomes. I hope that you will always have that sense of pride that you did the best thing possible in this moment, and that you had the courage to keep going with it for his sake.
Those pictures of Isaac, by the way, are just beautiful. xo
Wishing you all the best, V. I’m not too sure I’m able to do/say much to help, but I am with you in spirit x
Hi Veronica. Thank you so much for coming to my blog and commenting. This is the first time I’ve read your blog — and what a hard post to read. I can imagine that it was hard to write. I’m thinking of your family during this time.
I hate when people compare situations, and I don’t want to do that. I just wanted to say that when you wrote about when you were diagnosed – how you knew what you had, but then people made you feel like it was in your head. That resonated with me, as I went through that before I was finally diagnosed with lupus.
Also – what you said about “normal” and how you know it’s not, but it’s normal to you. We still step back and talk about that with one of our children. It’s normal to us, but it’s not “normal.”
Sorry to have random thoughts on this post. I’m going to go back and read more of your blog. I’m really looking forward to learning more and following you. I sincerely wish you the best as you navigate this new diagnosis. Hugs.
It’s like that with diagnosis isn’t it? A family friend has lupus and our symptoms are very very similar, they’re both connective tissue problems, only mine is genetic and hers is auto-immune.
I think it’s because doctors are so used to being right in everything, when whatever you’ve got doesn’t fit the usual ear infection/chest infection/broken leg/cancer they get a bit overbearing and make us feel 2 inches tall for daring to be “different”.
oh! and i’ve been voting for you on Circle of Moms.
Im glad you have a dx.you can get services for him and the help you need.
Do be prepared for the grief though………
lots of hugs
Glad there is help available, but sorry you and Isaac will need it.
Just wanted to say a quick hello
Sorry, fingers slipped… Sending an e-hug, diagnosis is bloody awful, even when you know it’s coming and you know it’s going to help. My son is 14 now, so his dx was 11 years ago, but every March I am SO glad to have got another year further away from that grim time. Would be very happy to chat on phone if you’d like to and do email. The ASD mums club isn’t one any of us would chose to join, but if you have to be in it, you have to, and it is full of wonderful people to know.
I would like that, all support is gratefully accepted!
There seems to be a lot of ASD mums out here on the internet. Birds of a feather?
Sorry, fingers slipped… Sending an e-hug, diagnosis is bloody awful, even when you know it’s coming and you know it’s going to help. My son is 14 now, so his dx was 11 years ago, but every March I am SO glad to have got another year further away from that grim time. Would be very happy to chat on phone if you’d like to and do email. The ASD mums club isn’t one any of us would chose to join, but if you have to be in it, you have to, and it is full of wonderful people to know.
Just wanted to say I really admire the way that you are dealing with this, you are such a good Mummy.
http://slightlymoredepththanateaspoon.blogspot.com/
Yes. I can see what you’re saying. Hugs, I hope you get all the help you need and no interfering busybodies!
He is so darn big now! OMG, where did time go?
You are a strong woman, you take everything in stride and always manage to make it work. You got this, and you had it managed even before they put labels on you and your boy. Having the support and tools to aid you should make things easier right?
It was so good to see you (even briefly) yesterday. While it is what you expect diagnosis wise actually having someone say “No you are NOT crazy” and putting a name to things helps. EICS is amazing, and I know they will take care of you, Nat, Issac and Amy. I’m gonna MISS you when I go.
I’m going to miss you too! I completely forgot to bring the GF pizza dough mix with me on Wednesday too. Bugger.
Its obviously fate saying we have to meet up again before I go! (BTW email me your address and I’ll send you and the kids and Nat postcards from the UK and Hong Kong)
Hard diagnosis, but at least you have one and that is a starting point. There is a long road ahead, as you know, but having you as his Mum is the best news he could ever have. Just remember, it is okay to sometimes run away and find a quiet space for yourself, even if it is just sitting on the loo. Although in saying that, when I went to the loo – my kids always found me – lol xxx
Offering hugs.
A tough thing to go through, for sure. Diagnosis of such problems is both good and bad. It’s great to know what’s wrong but often sad when thinking ahead. One step at a time is the best way. Do your job, and you’ll be fine!
I know that hearing the diagnosis was hard, now that he can get treatment, things can get easier. I hope they do. xo.
What shines through here Veronica, is that you are surrounded by genuine friends who care, offer support and gentle words to wrap around you a support network which in the days to come will prove I think that genuine friends make the world of difference when coping in adversity.
The knowing part I understand wholly. As ever I agree wholly with Rusty Hoe, aka Michelle. Wise words.
The coping and dealing part will push you to your limits but in the doing of which I am sure, you will find that both of your children are so wonderfully special that despite down times your heart will overflow with the blessing of motherly love as their individuality and spirit makes you proud.
Milestones will be passed, early intervention has been proved invaluable. There has been a lot of reports in The News very recently about collective researcharound the world into Autism which I think will really help with alternative education opportunities for those with Autism. The emphasis also talked of the need for education on the understanding of Autism, embracing special qualities as gifts to be recognised as such. Working with drawing for example as ways of expressing thought rather than expecting everyone to use language as the only medium of expression.
It is so hard to push for diagnosis when every bit of one’s self wants to run away and hide. But you prove each day in every way that you are a good mother because you strive to get the best help for your children. The doing of this takes it toll but you should be proud of yourself Veronica very proud. Because you embrace challenges and in the doing of this, each day you become stronger.
The knowing, acceptance of diagnosis you describe. with maturity and clarity. The coping is hard but you are loved Veronica because you are so honest. As you describe the journey ahead, around the world via your blog there will be people supporting you, good days and not so good days.
I am off to read the links given by you and others. To learn more in the hope that I will be better placed to be there if you need me to be.
ps I hope I got across what I wanted to say ok, I am typing with one eye shut again.
gentle genuine hug xoxoxo
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