Autism journeys & learning mindfulness

Autism journeys & learning mindfulness

I look back on our short autism journey so far and wish I knew then what I know now. Henry is our third child and still, we did not see it, we actually chose to leave it for another 6 months or so as perhaps he was just not ready to socialise!!! Were we in denial? Absolutely not, we genuinely had no idea there were any issues and after that 6 months, our concerns went no further than perhaps he has a hearing issue!

Early intervention and the benefits thereof is something I keep reading on social media and yes if you know what you're dealing with most parents would be immediately accessing whatever help and therapies they could for their child.

The reality is very different though (most professionals won't even mention the word autism until the child is around 5 or 6 years of age), getting access to therapy for your child is a minefield, and another thing you will hear/read a lot of is that it's super complicated, and autism for every child is different. It's true.

Early intervention simply means accessing professional advice/services on how best to cope with and help your child, it is not going to change their autism. 

I look back on some of the things I have written in Henry's EHCP sections and realise that we have been and are still are on a journey. Gosh, I even wrote once that whilst we felt strongly that Henry could not cope with a mainstream school for Reception, we felt that with the benefit of therapy we could see no reason why he should not mainstream for secondary, ha ha ha. As it turns out he wasn't able to cope in an autism unit attached to a mainstream primary even. 

I still believe Henry will achieve more than his paperwork suggests, I don't know why I just do. When you have the privilege of getting to fully know, connect with, love and raise a child on the spectrum you get to experience a mind that is so pure, and so incredible and most definitely on a whole other, and way higher level than ours, I believe.

In his own, very different, very unique way, he is super intelligent. Will it translate to independent living and a job one day, who knows? The journey will tell, we will share it, and no matter what, we will be there for him. 

I have mentioned it briefly in social media and the thing I want to elaborate a little bit more on now is that we autism parents and our extended friends, families, carers, support networks, need to be super accepting, respectful and mindful of the many decisions parents make when it comes to educating their children, and when or whether to tell their child about their autism.

We need to value and respect their choices and be thankful for the professionals out there who have dedicated their careers towards so many different types of research, therapies, schools, medications etc.

If we can't do this amongst ourselves how will the general public out there ever learn to understand and accept our children? I sound like a preacher now but, I have had to learn this and it has been hard. 

 

 

I have been baffled by people who do not want anyone to know their child has autism but, now I can understand.

I have felt infuriated by people saying I have it easier because my son is so obviously severe and will never mainstream but, now I can understand.

I have felt frustrated and saddened by parents who have not told their child they are autistic but, now I can understand.

And all of this has come from launching 'Autism Threads' and social media/IG. Amazing really.

Coming to terms with having a child on the spectrum is a journey in itself and recognition and acceptance thereof can take years, and that is as the parents! Telling other people about it can take more years still.

It is a vast spectrum and for every school choice a parent makes, or dietary choice, or therapy choice, or intervention or 'cause of' a parent decides on, there is a reason.

So, who are we, as autism parents, trying so hard to stop others from judging to then go and judge each other about our choices?

EXAMPLES:

1. ABA therapy that seems to get such bad press.

2. Vaccines being the cause of autism (some parents need to believe this, and that's ok).

3. Mainstream vs specialist vs autism-specific schooling, who cares? What matters is what is best for the child.

4. Stripping their diets of gluten and using Epsom salts and Vit B12 shots etc.

5. Going the homoeopathic route or, oils and massage, or medication.

6. Choosing to tell the child, or not.

7. Choosing to not tell the school or employer.

8. Liking or loathing the puzzle piece.

9. Parents of Asperger's children separating themselves from the rest of the autism community (for some, whose children mainstream and whose parents know only too well what the general public perception of autism is, well, ok).

10. Diagnosing. Yes, it's super important but, every family is on their own journey and whether that diagnosis comes at age 2 or 6 or 15 or 28 or 45, it's all OK. 

So bear with us complicated autism parents, please. Parenthood is a mind blow, and an ever-changing journey for us all (no truer than when they hit the teens....arrgh, screenagers!) It's just much harder and way more complicated with autism and associated learning difficulties.

We so badly want others to understand and accept autism but, it is indeed complicated.

 


2 comments

  • Gogo

    Gorgeous pictures of Henry and message from the heart. So warming and helpful for all. I am a grandparent just loving this outpouring and consequently loving Henry and his family

  • Myf

    hey Trish, this is really interesting! thanks for sharing x

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