Parents of ASD children. Just how on earth do you cope? I am so worried for a friend who just can’t accept her little ones path. Particularly struggling with daily meltdowns, no communication whatsoever so little understanding yet of what causes his meltdowns or what he does/doesn’t like. I feel very helpless and don’t feel like I’m supporting enough
I posted Welcome to Holland as I had to remind myself that wishing my son was neurotypical/at the correct stage developmentally was not only pointless, it was stopping me seeing the good things in our lives.
My son was diagnosed at 3 1/2, he was 6 last week. He has Autism and Global Developmental Delay and just now, the latter is the biggest hurdle for us. The uncertainty is crippling for me, it’s not something I deal with well. In saying that, my level of acceptance has improved over time - the irony? I am in a 12-Step fellowship which is based on acceptance being the key to peace of mind!
My son went to a developmental nursery and some of the mums from there are in a What’s App group. That has been a life saver for me. I can be honest and know that they’ll understand. We support each other and celebrate the victories too. There are a lot of ASD groups from my own area, maybe your friend could join some? Or if her child is in a supportive setting, could she set a What’s App group up?
The Health Visitor played a huge part in the process for us. I appreciate the last two years have changed things HV wise and maybe your friend’s child is at school so that wouldn’t work but she set the ball rolling in times of diagnosis and accessing services. She referred us to everyone we needed to see and she was brilliant. In Scotland, once your child goes to school their Head Teacher becomes the ‘named person’ but I’m not sure how it works elsewhere.
If the child is at school, are they in an appropriate setting for their needs? I know this is a huge issue (our council has an inclusion policy so far too many kids are in the wrong environment) and your friend may have to fight. Do they have a Paediatrician assigned to them? It’s different all over the country but in Scotland, we were under a Community Paediatrician until my son went to school.
Does your friend have a good support network? We had to adapt quickly and we’re a good team (my husband has a totally different outlook on things). It’s important she has people she can be honest with (sounds like you come into that category). It’s ok to grieve; I still am it’s just not as acute. It’s ok to feel the family has been cheated and that it’s just unfair. If your friend keeps her feelings to herself then they will fester. She is not a bad person for wishing things were different or getting frustrated or crying a lot, even if she thinks she is.
My son is non-verbal. We have been lucky that he’s been able to indicate quite well what he needs since he was little but that’s coming on leaps and bounds since he started school. Speech and Language Therapy have been the most disappointing part of the process for us (we’re on our fifth Therapist in 2 1/2 years) but now he is able to point to his teachers what he wants on a picture board and understands that’s what he’ll get. We’re lucky he goes to an ASN wing at school and is in a class of 8 with 4 members of staff. Nobody can say he’ll talk but they can’t say he won’t either. The intentional communication is coming on leaps and bounds. Maybe your friend’s child could understand Makaton? It’s never worked for my son but has for other kids I know.
Meltdowns are so tough, and distressing for everyone. It’s maybe coming from frustration or under-stimulation/over-stimulation. Or it could be something in the environment - too light/too dark? Too noisy? I went on a sensory workshop put on by our Occupational Therapy Dept at the kids hospital, it was interesting. Some can feel things opposite - my son hates getting his haircut and that maybe because of the falling hairs we aren’t aware of feel quite heavy and sharp to him.
Does your friend work? If so, is she aware of what she’s entitled to as an unpaid carer in terms of time off for appointments etc.
Are they claiming what they’re entitled to? My son is on Disability Living Allowance. The form is awful, having to think of the worst case scenario for each question but it might make things easier. Before my son started school we were going to use it for private SALT but the waiting lists are huge. Now most of that money goes on feeding my son’s addiction to berries and expensive scampi
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It is a really, really tough road. I have no other children so my parenting experience is solely autism and GDD and that overwhelms me sometimes. Many a day I have a cry because my son is still in nappies at 6. But Holland is beautiful. When we see my son picking what he wants to watch on his iPad or putting his rubbish in the bin or coming in for a cuddle then that fuels me to carry on. And we just don’t know what the future holds - I have to work on accepting that good things will happen but I know they will. Your friend will get there and they’ll find their rhythm. But it will be easier if they’re getting the help they’re entitled to. Sending your friend lots of love
Hopefully being back into that routine will help everything! Do you think Christmas was a bit overwhelming for him this year? My little boy had a funny couple of weeks he had a virus of some sort, nothing serious but he barely played or made any noise for days. The dr didn't seem too worried but I was! Then once that shifted he sparked back and has a good few days! He's seen the physio again and is going to get a lycra bodysuit to help with his sensory issues and hypotonia. I'm hoping that will help a lot! X
