Do I just accept this?

image Do I just accept this?

Do I change my children or do I change the world?

As my daughter sat beside me in bed and read from her reading book I wanted to freeze frame the moment. This is awesome. That any child learns to decipher scribbles on a page and decode them to understand words and meanings is amazing. This is the wonder of learning to read. It made me want to cry. Partly with pride in my daughter but partly with sadness for her twin.

Will her brother ever understand sentences and grammar and spellings? Will he ever be able to speak or read a book to me? Does that really matter?

And once again I am faced with the autism dilemma that I try to bury every single day:
Do I force my children to conform to social norms and mainstream curriculum, do I carry out therapy after therapy with them, alter their diets and ‘treat’ their autism, or do I accept their differences and embrace all that they are and instead spend my time educating and encouraging society in awareness and love for all people?

In other words, do I just accept this? Do I try to change my children or try to change the world?
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The longer I am in the autism community the more I am pressurised to join a different ‘camp’. People want to know if I am in the ‘acceptance’ camp, the ‘genetics’ camp, the ‘vaccine blaming’ camp, or the ‘healing camp’. And it is so complex an issue I just can’t decide.

The problem for me is I have two very different children both of whom have a diagnosis of autism spectrum disorder (or should that be condition?). One is non verbal, one very verbal. One has severe learning difficulties and global developmental delay, the other is academically able and only displays delay in gross motor skills. One attends a school for children with severe leaning needs (a special needs school), whilst his twin sister goes to the local mainstream. I have the honour and privilege (some would argue stress and difficulties) of seeing so much of the spectrum. I hear talk about which end is the most ‘difficult’ or the most ‘challenging’ and I truly can’t answer that.

On the days my son is biting me, screaming for hours in distress and I have no idea what the cause is, or I can not pull him away from the lifts in the shop in order to buy a simple item, I would agree with those who argue the more ‘severe’ end is harder. Then on the days when my daughter takes panic attacks and can barely breathe, when she talks about how sad and confused she is, when I look at her and see a child so vulnerable and socially struggling, I can identify with those who feel the more able end of the spectrum have it harder. I love that my children won’t bow to peer pressure and see the world in a very unique way. I love that something so simple as a lift door closing brings my son to the height of ecstasy. I love that my daughter can focus so intently on her obsession and memorize huge chunks of script. I can see benefits to their basic understanding of the world, how things are black and white to them and their love of order. Of course I love them for who they are, irrespective of autism. I don’t ‘hate’ any part of them even in my toughest moments.

But on the other hand I fight strongly for speech and language, and occupation therapy, and support in school. I would do anything to hear my son’s voice. I push for respite even though I love them. So I feel so torn between the different camps.

While I didn’t see much change in my children after their vaccines I know families for whom the change was both real and devastating. If I truly thought vaccines had an effect on my child would I want the world to know and prevent their child or family going through what I had to? Of course I would. So while that anti-vaccine camp may not apply to me I do understand people’s passion.

While I really want to know and understand if there is any genetic reason for my children’s autism I feel very uncomfortable with the thought that if a full genetic explanation can be found this could lead to couples choosing to not give birth to babies believed to be on the spectrum. And it does seem like every other day there is another article giving some bizarre reason why there is an increase in ASD. There is enough guilt on families already and for a huge proportion of families this can lead to parents taking antidepressants. And with massive funding in research there seems to be ever decreasing funding for support.

As a believer in God I have also been asked about my views on whether I believe God could heal my children. I firmly believe he could. Do I believe they need healed? That is another question altogether. So I pray for strength, wisdom, and knowledge to know what paths and camps to seek advice from and when. I pray for healing. I pray for their teachers and therapists and I also pray that as a society we become more tolerant and understanding.

As with everything in life there is rarely a simple answer.

Do I just accept this?

Well I clearly want the best for my children so I will continue to pursue any avenue I feel is right for them to help and support them.

Do I change my children or change the world?

Right now I think it is a bit of both. In fact I would even say my children are possible changing the world in so many wonderful ways.

They are starting by changing me.
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9 thoughts on “Do I just accept this?

  1. Neither, you equip them as best you can to change the world for themselves♡♡♡ I also have twins, girls. One with special needs and the other perfectly mainstream. I love them both immeasurably. But I am awestruck on those occasions when I stand still long enough to view the world through my SN daughters eyes, it is breathtakingly beautiful.

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  2. Autism politics are time consuming and pointless. Don’t get sucked in to any ‘view’. Keep a very open and sceptical mind. As a believer you do not need idols to sacrifice to ‘Acceptance’ can slide into intolerance of therapy and education and too much belief in a cure can undermine reality.

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  3. This post very much reminds me of discussions with a friend of my mothers in the 80s who worked with deaf pupils in a school – many of her pupils were adamant that if a cure for their deafness was found they would have no part in it: their being deaf was who they were and they and their families were proud of who they were. I wish there were easy answers to your questions. I guess the fact you are asking these questions in such an eye opening, clear way will help you, and the rest of us, work out the ‘better’ path for children who don’t fit into false ideas of ‘normal’.
    Thanks for writing and sharing this – truly eye opening,

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  4. I have both ends of spectrum too (son and stepdaughter). You don’t change who they are, but you do try and teach them skills is my view, so they can have the best possible quality of life. Too much of the autism education world has low expectations, dressed up in the clothes of “respecting the autism”.

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  5. My son has ASD. He’s 6. His little sister is ‘normal’. She’s 5. They’re in the same mainstream school and look after each other on the play ground at break time. He only started reading at the end of July. She’s reading like a pro. She’s a social butterfly, he’s got 3 friends (I know, I never imagined he’d make 1!) It’s a hard slog some days and she doesn’t understand that chatting his ear off makes him upset, she just wants to talk (all the time!) I’m not in any camp except the nil support camp. We have no therapy, no respite, no support worker. Most days I’m just glad he slept lol I tell anyone who wants to know what autism looks like in our house and few are brave enough to tut, snigger or comment nowadays. Keep doing what you’re doing mum. You can help your kids and raise awareness 😉 look up the autism parent serenity prayer. I have it stuck on my kitchen cupboard xx

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  6. My son is 14. Diagnosed aged 4 as ASD. Now has ocd as a co-morbid condition. He’s bright in many ways but his crippling ocd has masked the seriousness of his ASD conditiin. We were told this year that he does not have “mild” autism but servers autism with significant impairment. I’ve been banging my head against a brick wall since he was 12 months old. Further back than that, if I’m honest because I always knew.

    He is such a fantastic person as he is. His take on the world and those around them is “pure” , not wrapped up in any of the hidden, coded language and antics of us “normal” folk. For his future I’d like him to be as so called “normal” as possible because it’s a tough world out there and it’s still all about fitting in and to fit in, you need to display conformity. Very sad.

    I take issue with God being able to heal my child. I do not believe in God. Might as well believe in unicorns and leprechauns and fairie people, as far as I’m concerned. And your God could “heal” your children? Really? Why doesn’t he then? Why did he bestow the gift of autism on them in the first place?

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    • Thanks for reading and commenting Wendy. As with autism, everyone is entitled to their own opinion. I respect the fact you do not believe in God and trust you respect my faith two.
      Thank you for sharing about your son.
      I hope he continues to develop and grow and he continues to be a blessing to you.

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  7. Dear Miriam,
    What a parent! I have just stumbled across your blog yesterday and read Jan 13 –Jun 13, Jun 14, Aug 14 and this. What an amazing journey so far and path you have been given. Your faith, courage and strength are admirable .. amazing .. wonderful. My expertise is in a different health field, so this may seem intrusive, but as with all human conditions there is much in common. I am always struck by how much has to be gleaned by the concerned individual/parent from the internet because of practitioner reticence at sharing full information, or plain ignorance/ incompetence. So here goes with a few (random!) questions, if I may.
    I did not see it in the early part of the blog so I was curious about the various therapies carried out. You mentioned Isaac responded well to deep pressure. How did they both respond to craniosacral osteopathy?
    Given the situation it is a wonder you have any time for yourself. And while there is very little respite it would be interesting to hear how you manage beyond getting a break from attending to their every need; how do you cope with meal preparation demands? How do you attend to your own health and fitness for your own good (acknowledging too their increasing physical demands on you)?
    Would like to chat to get your perspective sometime. And perhaps I might add to your already wide body of knowledge from research and experience. Not a facebooker, but can be reached at togbuga@ymail.com
    God bless, D. R.

    Liked by 1 person

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