On Saturday it will be one entire year since HRH was diagnsosed with autism. It feels like a lifetime ago, it is a lifetime ago. Our lives have changed so much in this year, but I can honestly say it has been a good change, overall.
Well, ok, I could have done without the reams of paperwork, the ongoing reams of paperwork! I have filled out more application forms in the last year than I thought possible. I suppose we could have done without the general shock and upset that went with the diagnosis initially. It was a lot to get our heads around at the time, more so because we had to explain what autism meant to everyone else when we really didn't know ourselves. There was a steep learning curve but now the jargon is second nature to us.
It hasn't all been rosy of course, the battle for services in this country is beyond ridiculous. The waiting lists have to be experienced to be believed and we have not recieved any help by way of Occupational Therapy or Speech Therapy. None!
His progress in the last year far outweighs the stress that went with it. He was non-verbal, not even attempting any sound and now he has several words that he uses often. He babbles and chatters non-stop and eventually that baby talk will turn into words, it is just happening later for him than it does for other children.
He has our Fabulous Royal Advisor, who loves him almost as much as we do. We are also very lucky to have great support in our extended family and they all accept HRH exactly as he is, no questions or judgements on any of us. The Royal Advisor, family support and the Facebook support group are what have gotten us through the rough times in one piece.
But it boils down to this: I don't think I could bear NOT knowing he had autism. HRH already had autism and in this case ignorance was not bliss. For us, the stress of not knowing how to help our son was far greater and diagnosis brought some relief. A year on I can be genuinely grateful that we found out when we did because it gave us direction on how to help him. We have seen such incredible changes in the last year, he has worked very hard, as we all have.
HRH will be three next month. We won't be having a party, he hates singing and is terrified of candles but that doesn't upset me. For now this is how it is, this is how he is, but in a few years.................who knows!
For anyone starting out on this journey, take heart and have courage. It is hard, no doubt about it, but what you get back from your child is priceless.
*photo credit google images
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31 comments:
He truly seems to be doing very well. :)
HRH has achieved sooo much: Huge congratulations Jen to you and everyone who has worked so hard to help him make all this progress xx
Wise words.
Knowledge is the only way forward
XXX
Great post, but I love the last line. It is perfect!
Absolutely beautifully written Jen :D
'The truth sets you free' I thought of that quote when reading your post, Jen.
Our children are who they are, so we need to work around that fact.
Congrats to HRH and yourself, Jen, you've all come so far in such a short time :)
You have done so well in the last year! Congratulations sweety!xxx
Congratulations to you and HRH for the amount of progress you have (both, may I say?) made. I wish Marie wouldn't want to celebrate her birthday sometimes!
Thanks for commenting:) It feels good to have gotten through the first year with a good measure of success:) Jen
I just wanted to say it was a lovely, moving post written from the perspective of an adoring Mum who has had to cope with so much the past months. It is true that it is better to know, and to accept and move on with the new knowledge. It is a scandal that there is so little back up from the local authority though – too much spent of ridiculous projects instead, I fear.
Happy anniversary! This post is a great 'party' for HRH! Wheee!
Sounds like you have found your 'new normal' and are adjusting well. Good for you!
That is such a heartwarming post, and hopefully one that will help others know that things will be alright, just your normal. You should be proud of everything you have all achieved over this past year, happy anniversary!
Knowledge is power and power gives us the strength to get through something as devastating as a diagnosis, no doubt about it though its tough but very worth it when you see what great strides our children make, well done to HRH and you for getting through this first year. xxx
Well done Jen..and HRH and ALL your family. What a fabulously positive post after such a stressful year. A year in which at least you knew what you were dealing with , so progress was made.
Can't wait to read more as your journey continues. Onwards and upwards (with a few detours no doubt... but don't worry about those!) I say!!
xx Jazzy
You are so positive about life, what a great quality. it is such a pleasure to read in your words the love you have for your kids. hope next year is a good one.
Great post. We too are so glad to have our diagnosis. It just means that rather than school assuming she is naughty they can see her behaviour for what it is - misunderstanding, inflexibility etc.
It is a shame more people don't look at a diagnosis as you do. Many parents see it as a bad thing, when in reality it is so much better to know.
I know at least one child who is definiately on the scale but the mum just won't contend that it is possible for him to have ASD despite him and Geeky Daughter being very similar simply becuase she sees it as such a negative thing. She doesn't even believe that Geeky Daughter has ASD. Such a shame that he won't get the help he needs.
BTW - have you been on Early Bird? Great way to learn more about Autism, tips and meet other local families.
Well done, all of you, it does get easier, or maybe the challenges change!
It sounds like you've had quite a journey in the last 12 months ;-)
Well done to you all x
What a great post! I agree about not knowing being very difficult. We just had our son diagnosed about 9 months ago and he is 7. He had been diagnosed with SPD and we'd been getting therapy, etc. but I still worried there was more to it than that. I wasn't thrilled with the autism Dx of course, but I knew it was right. And the knowledge has helped us a lot.
I am so glad HRH is doing well. And I am sure this is just the beginning!
Oh Jen..lovely post..rings so true! I remember being relieved at diagnosis..finally an answer!
I am beyond furious for you for the lack of services-furious! How very wrong that is.
Even though he hasn't gotten everything he is entitled to service wise...he is thriving because his Mama and his family is right beside him..:)
Things will continue to change. I understand how frustrating it can be to not have the proper services for your child. I am working to get ABA therapy for my son. Insurance won't pay. I'm also still trying to get a communication device for him. He is completely nonverbal, and really needs one.
Excellent post Jen. You are such an amazing and strong mama. Your patience and understanding, and the way you can make this situation into such a relaxed easy process is great!
And I totally get the party thing. We have to do things differently with our special guys don't we? But that is what makes them so unique!
That first year does teach us an awful lot doesn't it; least of all to be strong, patient and calm.
CJ xx
I bet it makes a massive difference knowing how you can help HRH. It is such a shame that the NHS is such a postcode lottery (do you have that in Ireland - sorry how ignorant am I?).
My JJ has his Aspergers assessment on Friday and I wonder what will come out of that? We will see.
Mich x
jen-tagged you on my latest post-and gave you a blogger award..:)
Hi there, just found you via 'Strange & Beautiful'. We've recently found out that our 4 year old son has Asperger's and we're already noticing how difficult it is to get help. I'm trawling the internet for information and I really appreciate all the ASD bloggers as they are proving to be a great source for us at the beginning of this bewildering journey. Hope your little one continues to go from strength to strength. I'll be popping by whenever I can to catch up with how things are going for you all.
Tilly.
http://non-neurotypicalnipper.blogspot.com
http://tillytatas.blogspot.com
Hi Jen- what fantastic progress he's made- nobody can understand how hard it is though, let's hope that next year you actually get access to some OT& ST
x
"His progress in the last year far outweighs the stress that went with it."
Gives as much hope as your ending sentences. A promo for early identification and intervention.
Barbara
Lovely post Jen, so well written. Your love shines out through your calm, gentle, thoughtful words, well done to all of you!
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