My princess, Ivory-Rose - UPDATED July 11th
Posted 4 years ago2019-06-20 00:35:24 UTC
Some of you might recall me yammering on just over four years ago about having a daughter or whatever. My little princess, Ivory-Rose.
Ivory is now four years and three months old and should be starting primary school in September. However, it now seems as though that is not going to happen. Instead, she will need to stay at home most days, and attend primary school only in the afternoons. Why?
For about a year now we've been unable to get Ivory to speak. She can count, spell, sing along to music, repeat what you say and will happily respond to questions. However she wont start or hold a conversation. She cannot sit and watch a video or a movie because she cannot understand the point of it.
After battling with the NHS to get her in to see the right people over the course of that year, we now finally have her official diagnosis. She's on the Autism Spectrum. Exactly where we do not know, and we have a load of new assessments coming up before she should be starting at school, but currently we've been advised that her speech and communication remains at the level of an 18 month old.
This is of course very upsetting to both me and her mother, but not because of the diagnosis. That came to us with some degree of relief. We're upset because it now means Ivory-Rose will grow up in a world where she will be considered a lesser person, because of something that she has absolutely no control over.
She isn't broken. She isn't worth less than anyone else. She's a human being.
TWHL is the best community I've experienced online, which is why I feel I can post this journal with no apprehension. I don't need to tell any of you this, but keep being good people. Stand up for those who need help and above all, be patient.
Urby.
Update 11/07/19
Her position within the autistic spectrum has been described as spiky. She appears to have strengths and weaknesses within every aspect. Her motor skills are top notch, while her fine motor skills are quite far behind. So she can run around, climb, jump, kick a ball and so on, but cannot hold a pen correctly or draw a shape. This also makes Makaton quite difficult for her which is unfortunate given her speech and language delay.
Her S&L delay which is affecting her communication is actually being considered an entirely separate matter at this point. However, vice versa, her autism is affecting this in other ways. Apparently, when a child has a speech and language delay, they fall back on their motor skills and communicate via gestures. Ivory cannot do this because she lacks the context behind what she is trying to say.
It's a wonderful double edged sword... In spite of this however, Ivory has been approved to go to the school of our chosing, with additional funding for one on one support. She will be going for the morning session every day which is three hours of a more structured, learning environment. The educational psychologist is confident that she can start going full time as soon as the new year, depending on her next few evaluations.
We're at the beginning of a very long journey with this. Thanks for listening.
For about a year now we've been unable to get Ivory to speak. She can count, spell, sing along to music, repeat what you say and will happily respond to questions. However she wont start or hold a conversation. She cannot sit and watch a video or a movie because she cannot understand the point of it.
After battling with the NHS to get her in to see the right people over the course of that year, we now finally have her official diagnosis. She's on the Autism Spectrum. Exactly where we do not know, and we have a load of new assessments coming up before she should be starting at school, but currently we've been advised that her speech and communication remains at the level of an 18 month old.
This is of course very upsetting to both me and her mother, but not because of the diagnosis. That came to us with some degree of relief. We're upset because it now means Ivory-Rose will grow up in a world where she will be considered a lesser person, because of something that she has absolutely no control over.
She isn't broken. She isn't worth less than anyone else. She's a human being.
TWHL is the best community I've experienced online, which is why I feel I can post this journal with no apprehension. I don't need to tell any of you this, but keep being good people. Stand up for those who need help and above all, be patient.
Urby.
Update 11/07/19
Her position within the autistic spectrum has been described as spiky. She appears to have strengths and weaknesses within every aspect. Her motor skills are top notch, while her fine motor skills are quite far behind. So she can run around, climb, jump, kick a ball and so on, but cannot hold a pen correctly or draw a shape. This also makes Makaton quite difficult for her which is unfortunate given her speech and language delay.
Her S&L delay which is affecting her communication is actually being considered an entirely separate matter at this point. However, vice versa, her autism is affecting this in other ways. Apparently, when a child has a speech and language delay, they fall back on their motor skills and communicate via gestures. Ivory cannot do this because she lacks the context behind what she is trying to say.
It's a wonderful double edged sword... In spite of this however, Ivory has been approved to go to the school of our chosing, with additional funding for one on one support. She will be going for the morning session every day which is three hours of a more structured, learning environment. The educational psychologist is confident that she can start going full time as soon as the new year, depending on her next few evaluations.
We're at the beginning of a very long journey with this. Thanks for listening.
24 Comments
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Make sure you be the parents she needs to have , not in terms of finances , but in terms of sacrifice , and if so I doubt she will ever turn out not right.
My belief is while they are little children it is always their parents fault for how do they turn out, but once they grow up they must be aware themselves, parents can not be blamed forever.
I hope you will find resolve to spend as much time as possible with her each and every day.
We just figured she was quiet, until we saw her together with her cousin (2 week age difference)
He was attempting to talk in sentences while she resorted to pointing, grunting and saying only one or two words.
hate me if you want but:
stop vaccinating her, or at least carefully study the composition. I dont know how anyone could inject mercury or formaldehyde into their kid
make sure she drinks clean water without fluoride
make sure she eats healthy, organic food, avoid animal products
make sure she doesnt spend time and especially sleep near sources of wi-fi or cellphone signals
again hate me, but theres nothing to lose
Urby, autistic folk tend to be razor sharp comedians when they get older, so at the very least she'll be better at telling jokes than her father.
Also how the fuck is she four already. Have you checked her for latent time traveller DNA???
Related to speaking, I also knew someone who couldn't speak until about 3 or 4. I hope this doesn't give false... hope. I think she's a beautiful child and there will be a place for her in this world, it's just that she's going to use a different set of mental tools to navigate the sea of reality.
For my own curiosity, when you say the she's not interested in seeing movies, why exactly? Is also play a subject that needs to have a purpose in her eyes?
Some autists turn out to be badasses. At least that's what Hollywood taught me. See The Accountant and The Big Short.
Being a distance education school there was a lot of physically and mentally handicapped students who couldn't go through the regular system (public schools are worthless for any sort of special needs), with a lot of them on the autistic spectrum. Being a kid I had no idea there was anything "wrong" with them socially speaking, it was mostly completely normal to me how they acted and socialized.
The school didn't really work out as at 16 years old I was rated at a grade 9 level (YIKES!!!) and we weren't going to get our K12, so again my dad pulled both of us out of there and put us finally into an alternative school. The contrast between the two experiences is indescribable, and I am glad I never have to go through the 'regular' system ever again.
There is most certainly a difference in parenting but nonetheless all of the kids (and adult students) at the distance education school were extremely well mannered, with a very clear "treat others how you want to be treated" attitude to socializing -- And they were always very passionate about one thing or another. They also were incredibly talented at these things they were passionate about, I mainly remember a lot of them being artists but certainly I've learned autistic people to be incredibly skilled at whatever they enjoy doing.
I feel like the reason autistic people are socially shunned so badly is that in my experience they don't often seem very interested in people, but rather things. The kids in the 'regular' school's entire purpose was simply to gossip, shittalk and use the 'socially acceptable' label to justify being shitty human beings.
Very few of them were in any way notable because 100% of their interests was drinking, smoking and getting high -- if I ever did hear any of them mention any other interests or hobbies it was so incredibly rare that I clearly don't remember. And whenever they were drunk and/or high all they talked about was how to get more drunk and high, and when they were sober--They spent their time bitching about being sober.
I personally wouldn't worry in any way about her social capacity, because at least in my experience having 'high social status' is far too much work and costs more than it returns.
I wish I had the ability back then to say no to those lifetime ditch diggers and burger flippers, but I wound up wanting to fit in and went from 16 years of never used ANY drugs to drinking, smoking and smoking weed pretty fucking heavily -- to the point of incurring some pretty brutal panic attacks and anxiety from loading my system up with a bunch of shit I didn't need.
I kick myself every day for not taking care of myself because I really could've poured seemingly unlimited resources into whatever I wanted to do up until that point. I had absolutely fucking unlimited energy, my mind was incredibly sharp (yeah probably not but compared to now at least) and I could hold information effortlessly when I actually tried to.
But this isn't about me but rather these qualities I noticed in those kids at the DE school, if my experience is anything to go off of I'd say you're gonna be getting blown away by what your daughter is going to be capable of throughout her life with the right guidance here and there. I certainly look back on what I remember a lot of them doing and give my head a good shake at how little I've made of anything in my life.
The primary school that she's got a placement with is actually my old school, and we know they have a fantastic reputation for learning support. In fact, Ivory's key person at nursery has said today that she thinks Ivory would actually benefit going to school as normal. Early days yet, and there are a lot of meetings and assessments still to come, but overall we're staying positive.
@Bruce: No hate here, but Ivory is actually long done with her vaccinations. Next one isn't until she's between 12 and 13. Personally, that's not something I would be willing to do. Again, I'm not concerned that Ivory is on the spectrum and I much prefer that over her being vulnerable against measles, polio or rubella.
I can understand why you might worry about her future. People on the spectrum can often be misunderstood by others who are apathetic, ignorant, or simply cruel. Supporting her is the easy part, but changing other people's behavior and attitude is nearly impossible, but we shouldn't stop trying.
I work with autistic children nearly daily, and I learned to see the spark in each one.
After working with children and their families for over twenty years, I've come to realize that parents are almost never to blame for anything. People are quick to judge, especially the parents themselves. Feeling guilty is part of being a good parent, but we should never allow guilt to consume ourselves. Parents seldom give themselves credit when something beautiful happen to their children, but they need to do that more often.
As for the anti-vaccine tirade, I will try to contain my rage. Ignorance is the origin of all bad decisions. There hasn't been any thiomersal (the mercury-based preservative) in any childhood vaccine since 2001. Vaccines do not cause autism; vaccines cause adults. Without vaccination, we would have an increase in the number of dead children.
I highly recommend the book Neurotribes by Steve Silberman. It lends a different perspective on autism, and helps those who don't yet understand it to have a greater appreciation for different types of mindsets.
We are all humans, and all humans are unique. Instead of wasting time to layer judgement on the differences, we should appreciate the virtue of our uniqueness.
im out
I also second Archie's suggestion that you get her tested for time traveler DNA, I'm pretty sure I remember it only being last year that she was born.
Fuck, even provide a single piece of evidence that mercury causes autism, let alone thiomersal.
I don't want to hijack Urby's journal for such inane debate.
By the way, I forgot to mention that she is such a beautiful princess. Leia's got nothing on her.
As for people thrown by her age, trust me, I'm as shocked as you and I was there.
Hell, my son is nearly 18 months already...
I'm really sorry for what you're experiencing, but that's life I guess...
She's your daughter anyway, and from what I've seen you're a positive person. The only thing no one and nothing can ever take away from you is your love for her; which is the most important thing a father can have in life in my opinion.
Lots of hugs to you, your family, and your lovely little sweetheart.
(Sorry for the late reply, I've been a bit busy
Also apparently I never commented on this, so I feel to make the above joke I probably should throw something in.
There's not a doubt in my mind that she'll grow up well with you behind her, Urby.