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Hi

JackJon

Hi, I have joined this forum to see if maybe talking about the problems that I am experiencing will help, maybe someone else has had a similar experience etc.

So about my situation. I am grandfather to a three year old boy and about six months ago he was diagnosed with classic autism and they said at the severe end of the scale. Now six months is not very long and there is an awful lot to learn, also there was no history of autism in my family and so I was unprepared for it.

The little boy, I'll call him Johnny, is not my biggest problem. At three years old Johnny is lovely. He is beautiful, he smiles and laughs constantly and he loves cuddles. No the problem is his dad.

My daughter gets enormous support from her family, myself, her mum, grandmother, aunts and many of the older children but this is limited because her partner insists on living at a distance and collecting the children for the weekend or going up to babysit is a four hour round trip. We can only help so much. Dad doesn't help. He has just spent the weekend down here and he slept in bed till mid day, twice, like he's lucky that he doesn't have kids. Johnny has a four year old sister and a younger brother. My daughter has to look after them all on her own and she is exhausted.

When I talk to him about moving closer he says that there are no decent schools in this area. I get in touch  with the local authority and find an excellent school and he points out that there is a power station nearby. I tell him that is ridiculous and there is no health risk and he says that they cannot consider moving until he can afford a detached house as it wouldn't be fair on the neighbours. It's madness! Except that it isn't, it's autism.

The doctor that provided the diagnosis for my grandson asked a lot of questions about dad's family history. This weekend we had our first open discussion about his autism and his father's. It has never been admitted in the family but it is coming out into the open now.

I can't expect people to be educated and understanding about little Johnny's autism if I can't understand his dad's situation and to help my daughter I have to gain dad's trust. It's all very difficult because it has all been a secret and it's all happening at once and I am just unprepared.

I should say that in many ways Dad is a good parent. He loves his children and they dote on him, he just doesn't help look after them. He has a good job and he is a good provider. He is my daughter's choice of partner and I think that he will be a good father, in his own way.

For now though, my daughter is dropping from exhaustion and all three children are suffering from a lack of attention because she can only do so much. So I try to figure it all out and help her. That's life.

Thanks for reading this.

  • Hi JackJon,

    It's so hard being a part of the family, but 'removed' from things. I have a very similar situation with my sister and her husband. She has come a long way in accepting her son's difficulties, but her husnbnd refuses to accept things, which means he is no use to her or their son. He too spends very little time with any of their three children, and it is all left to her.

    If I could be so bold as to say so- I don't think it is right to expect them as a family to move to be nearer to you, as much as it means you would be able to help more. I live many miles from my sister and would love to help them more than I can, but it is something we have to bare if we are not prepared to move closer ourselves. Also, the change for someone with autism can be extremely stressful, not to mention the strain on your daughter of moving and having to build a new life for the family.

    What I know from my experience with autism, is that the journey to acceptance is a personal one. For you, for your daughter, your son-in-law, for everyone involved. But hopefully your son-in-law will get there eventually. It may take longer, and it will definitely require you all to support and give him information bit by bit, at times that he's ready to hear it. It's not something we can force, no matter how frustrating it is. It will also take longer if he indeed is on the spectrum himself, as you suggest!

    What you can do is be a listening and understanding ear for them all, support as and when you can, and maybe do some reseacrh for the area they are in- there may be some respite services or something that they could access that would help your daughter get a break or spend some quality time with the other children. Or maybe there's a club that Johnny would like to join, and you could gently suggest that that's something his Dad could take him to. Then he is helping more and will be spending time with Johnny outside the home, which might help him to see his difficulties and needs a little clearer.

    If you are a person in his life who is helpful, respectful and patient, I'm sure you will gain the trust that you seek, which will put you in a much better position to help them all.

    In the meantime- don't worry about being unprepared! We are none of us prepared for the unique and unexpected challenges that autism brings, we just have to learn as much as we can and celebrate the succeses when they come!

    Best of luck to you and your family.

  • Hi

    This is all a lot for you to take in and I know I am exhausted reading how your daughter is coping with 3 children under the age of 5.  Autism or not, that is exhausting.

    We are in the 21st century, however, I am going to go out on a limb and say that the mothers do tend to generally fall into the role of chief nurturer and the dads chief breadwinner.  Not always the case, but it is still the most common division of roles.

    My husband has Aspergers but has never been diagnosed or perhaps he just has some traits but I know I cannot always expect too much of him and he does his best.  I still love him for who he is and how loyal, honest, hard working and genuine he is.  I do of course find him very frustrating at times as I am sure he does me, but none of us are perfect.

    I was speaking to someone the other day who is grandmother to 2 children living in Tazmania.  She has just seen them for 3 weeks but may not see them again for 2 years so 4 hours seems very close in today's global world when you think of it like that.

    It will be a lot for you all to take in and they say you even go through a sort of grief when accepting diagnosis.  Your son-in-law may be feeling very guilty even though it is not his fault and anxious for the future to be good for his son.

    There are courses that are offered to parents after diagnosis called Early Bird and such like and I am sure there is a similar one for grandparents.  My husband and I found these very reassuring and meeting others in our situation that understood.

    There will be support services in your daughters area including an NAS branch where the others attending it will be a fountain of knowledge as to what else can help such as perhaps a support worker from a Disability Service.  DLA to help pay for some childcare for the other children occasionally perhaps to give your daughter a break. 

    Give yourself some time to go through the emotional reactions that are to be expected, including anger, but be cautious about destroying any precious relationships.  Your daughter must love her husband just the way he is.  It is hard watching family struggle and often being at the end of the phone to listen is as important as anything in my view.

    This little paragraph helped me come to terms with our wonderful boy and my wonderful husband.

    Best wishes

    WELCOME TO HOLLAND

    by
    Emily Perl Kingsley.

    c1987 by Emily Perl Kingsley. All rights reserved

     

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

  • Hi JackJon,

    I may have misunderstood but reading your account of things "It's madness, except...." are you suggesting your grandson's dad must be autistic and therefore the source?

    These things aren't altogether clear. They do look at family members to see if there's a pattern, and sometimes a parent or a relative may be on the spectrum. But this pattern need not be as obvious, and there could be autistic patterns in both parents' families.  Its not something you catch or necessarily in the genes. However no-one is really clear on the cause.

    It is probably not best to look for blame here. Your son in law may not appear to be helping directly but he is the breadwinner and is supporting the family. He himself must be feeling quite worried about the possible implications others will read into things. but I guess he's also likely to keep it to himself.