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Autism in son and granddaughter - it's not fair

One-in-eight Australians provide unpaid care and support to a family member or friend with disability, mental illness, chronic condition, terminal illness or who is aged. But what is it really like to care? Share your experience here.

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JoWagg
Posts: 1
Joined: Thu Jul 18, 2019 4:43 pm
Group: Carer Peer Connect

Autism in son and granddaughter - it's not fair

Unread postby JoWagg » Mon Jul 22, 2019 8:04 pm

I have no idea if this will even show up on the Carer Peer Connect Forum, because I thought I logged in, but there doesn't seem to be acknowledgement of this. Can anybody tell me anything helpful about this? What have I done wrong, or not done?
I have been trying to find some kind of support group for myself. I am the mother of a 28 year old son who has Aspergers. His first-ever sexual relationship resulted in a pregnancy that was unplanned and, to be perfectly honest, pretty ridiculous, considering how unprepared and uninformed the young parents-to-be were. They would not seek the counselling that I had suggested might be a good idea, given it was an unplanned pregnancy and neither of them had any idea of what they were getting themselves into. The relationship was iffy at best and disastrous at its worst. But they stuck it out and, cutting a long story short, their daughter was born in the NSW country, where the mother of the child had grown up and had her parents nearby.
Eventually they moved separately to the Central Coast, where they have set up two homes for their daughter and they share her care. It is a very challenging situation. Neither of them has work, so they rely on the money that is allocated to them by the government. They both call on us, my son's parents, these days. It wasn't always this way, but they are pretty desperate these days, with one thing and another.....
The little girl was always different and I suspected that she had some sort of disability - probably autism. (I have a Child and Family Health Nursing graduate certificate). She was duly assessed before her second birthday - Autism Level 2. She has occupational therapy sessions and some physio, both through the Child and Family Health nurse. Speech therapy is once a fortnight, but she needs far more intensive therapy, as she is not speaking and rarely, if ever, mimics other peoples's attempts to elicit a word from her. I have offered to pay for private speech therapy until their NDIS funding comes through. Hopefully this will begin soon.
I am constantly concerned about the challenges of this family situation. Another concern is that they are vegan and this includes my granddaughter. To my mind our granddaughter is not getting adequate protein or vitamins in her diet, although she is growing normally. It's difficult to find anybody who understands my perspective on this. I talk to my sisters, but they point out the positives of the situation. I know this sounds mean of me, but I need somebody to listen to what I'm saying, not offer platitudes! The only way I can get this support is to pay for it through counselling for myself. It would be lovely to find other grandmothers who understand my pain. All the grandmothers I talk to are obsessed with their grandchildren and they rave about the wonderful relationship they have with their grandchildren. This kills me inside. I cannot understand why I have a son with Aspergers, whom I love to death, but he has been, and still is, hard work all the time! He is draining, needy, hopeless in some ways, but amazing in other ways. He will always need somebody to help him in many of the tasks of life. And now he has a daughter who is just as needy! Here I am in the middle of this, trying to work out where I fit in and how much I should realistically be involved. Family is everything though. What else is more important than family? Nothing that I can think of. I am pretty desperate about all this
Fortunately I have a supportive husband and a daughter who is supportive, although she is worried about her prospects of having a child with a disability. Grrrr........... I didn't ask for this and I don't like it! Where to from here I ask?

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