Sunday 19 July 2009

The Grandchildren

Photos are copyright of Maggie May.

Not long ago, my four grandchildren got together for the weekend and it is always lovely for the cousins to meet up.
One evening, I went with my son and my daughter, my husband and the four children for a pub meal and the children were happy to play in the enclosed grounds after eating.
Dean, Amber and Millie always get on so well and can often be seen with their heads together playing some game or other. Dean has infinite patience with his younger cousins.




However, Rick, who has autism, quite often wants to do his own thing and leaves the others to their own devices, often preferring to kick the wood bark and run around and release his energy. Sometimes this can get out of hand.

I think I knew there was something different about him when he was three years old and I noticed at his Birthday parties that he always seemed to be in a corner by himself, playing with his wrapping paper, while his guests played together with his toys.
It appeared that he was shy and it must have been put down to that. By the time he got to ten or eleven, it was pointed out at school that he was falling behind with his work and going off into a little reverie, when he wasn't interested in the subject, which was quite often. He also seemed to genuinely have little inkling about other people's feelings and didn't show much empathy towards others if they got hurt and his social skills seemed to be lagging behind too. He always liked to play with younger people rather than his own peers.
By the age of twelve, he was diagnosed with high functioning autistic spectrum disorder. My daughter is now joining organizations and getting advice on funding for him as well as visits to the Educational Psychologist. I just wish that it had been diagnosed earlier.




Sometimes he does play well with his brother and smaller cousins, so he is not always solitary and he does have some close friends at school who like and accept him.

Whatever has happened, my first born, fair haired grandson will always be loved by us. He is unique, as all these children are. He is a very special child, like the other three.
I just hope that he will not slip through the net at school though and that Deb will manage to get the very best for him.
Through no fault of my daughter's, there is a big delay in trying to get an official statement for school, so that Rick would get extra help automatically every school year and there is no guarantee that this will be granted.
Sometimes it is like trying to get blood out of a stone with the authorities that we have to go through even though Deb seems to be jumping through hoops!

I found that Crystal Jigsaw's post *Alternative Wiring* about her daughter's autism was very helpful and it is always useful to read about other peoples experiences.
Every child with this condition is different and we are also trying to cope with a child who has been hurt by the illness and the death of his father and also with the hormones that are beginning to rage round his body.

Why, oh why didn't I speak of my suspicions earlier! There was a lot going on in the boys' lives for a good few years and I suppose Rick's condition was not as significant as his difficult home situation was at the time. There was always the chance that he was reacting to those situations and that there was nothing else wrong with him.
Nothing can put the clocks back, but now that we know about his condition, Rick is responding to extra private tuition in the subjects that he found difficult and his weekly trips to the local Autism group that helps him with socializing. He certainly responds to one to one tuition better than being in a large group. It is no use though, to always be thinking if only...... We have to live in the here and now and hope that things will work out well for him.

30 comments:

Casdok said...

I sincerely hope things work out for Rick and glad to hear he is responding to extra help. It saddens me so much to hear that his school did not pick up on his autism earlier and give him the help he needs.
Glad your daughter is getting support to.

Hilary said...

This is a beautiful post. You certainly can't beat yourself up over not catching on earlier - particularly if life's circumstances could explain behaviours away. The best you can do is take it from here, and it certainly sounds like you are. The photo of all three children playing outdoors is just beautiful.

Sarah Lulu said...

Hello there ...I work with autistic children most days ...

He will find himself with so much love and care and attention.

I believe we find what we need at the right time and this is his right time.

With you and your wonderful non-judgmental acceptance ..he can't go wrong.

God bless your journey and his.

Sarah Lulu

Strawberry Jam Anne said...

He is obviously part of a very loving family who will give him as much support as they can. I do sympathise though Maggie and wish all good things for you and your family, especially your lovely "first" grandson. A x

Rose said...

It is unfortunate that he wasn't diagnosed earlier and couldn't have gotten extra help at an earlier age in school. But with all that Rick has gone through, it's understandable that this was overlooked. As you say, you can't dwell on the "if only's," but need to concentrate on the present. I know that having such a loving and supportive family will go a long way in helping him.

Irene said...

I had a son like Rick, and even tough he was only diagnosed with ADD, I always knew there was more the matter with him. He grew up to be a strong child in spite of himself and managed to create a life for himself that was unique, yet good for him. He died early, due to cancer, but I always wonder what other battles he would have had to fight in his adulthood. Live wasn't that simple, after all.

MarmiteToasty said...

I so hope you can all get the special help that Rick needs at school and elsewhere, I have a friend fighting to get her son statemented.. then the doors will open.....

But what a loving and beautiful family he has surrounding him....

x

Akelamalu said...

It is a shame that he wasn't diagnosed earlier. He has a loving family and I'm sure your daughter will fight tooth and nail to get him the help he needs. Good Luck to all of you.

Rosaria Williams said...

He is probably functioning on a high level in many things, one reason the school didn't catch his difficulties earlier. He will be tested, then meetings will be called to discuss the results and an educational plan will result. It takes time because schools have many needs and few resources. Your daughter needs to stay on top of the communication, persistent and positive.

Most of us miss the little things; or hope children will outgrow them. Don't blame yourself.

Suburbia said...

You are so right Maggie, if onlys are pointless but we can't help it can we?!

It is so frustrating that the wheels of bureaucracy work so slowly, but you know that you will get help eventually, and it's great that he is responding to interventions already have in place.

Take heart. Perhaps it was better that your daughter didn't have to deal with all this over the last few years when she had so much else on her plate.

(5 more days yay!)

S x

Grit said...

i'm glad he's receiving one to one tuition. i've seen many children really thrive with that type of close support.

SandyCarlson said...

What a loving bunch. I love that last photo. The socks! The focus. The kids just being kids. What a great gift of acceptance they have received.

Wendy said...

Such a heartfelt post. Maggie, don't blame yourself. Everything happens in the proper time. You don't know how things might have been had he been diagnosed earlier. As somebody else pointed out, your daughter might not have been able to cope with everything at once.

It really is a shame that the waiting list for special needs for autistic children is so long. It is here in Canada too. You'd think education and special needs would be addressed first, or at least quickly.

Well, grandma, your grandchildren look healthy, loving,and wonderful. Rick will be nurtured and find his wings.
Hugs

Maria said...

Now that the problem has been diagnosed, hopefully things will start to get better. He seems to have a good understanding mother and grandma anyway. I'm sure he'll be okay. All the best!

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Thumbelina said...

You can't berate yourself Maggie. You can only move forward from here. Don't let guilt be a destroyer.
I love the photo of the four of them all together. Such acceptance and the love of your family and his friends will make ALL your grandchildren feel like the special, unique individuals that they are.

Beautiful post.

Brian Miller said...

don't get too down on yourself for not speaking out further. i work witha a little boy that has autism and he has made some amazing strides in the last year. it took a while for the school to come around here as well, but he had good advocates. what you do now that you know will make all the difference in the world. grace and peace.

Maggie May said...

EVERYONE......... I would just like to thank everyone for the supportive comments and I really do appreciate it.

Some of you have said that maybe my daughter could not have coped with the diagnosis when I first suspected things were wrong and I think you are right as there was so much going on in her life at the time. She had enough to worry about and she has said as much to me along the same lines. Many thanks for pointing this out.

Anonymous said...

Hi Maggie, a lovely post as always. For some reason your grandson wasn't diagnosed at an earlier age but it can be celebrated now that he does finally have the support and encouragement that he will need in order to one day live in our forever changing world. Some parents and families of autistic children are in denial of their difficulties (I spoke to one mother recently in this situation and tried to make her realise the awful bearing this will have on her son in later years). You and your family have acknowledged that your grandson has issues and they are clearly being addressed by all. Your grandson is one of the lucky ones. He has a wonderful family and I suspect excellent support. I wish him, and your family, well. And should you ever wish to email me please do so. I'm not an expert, but I am a mother and live with autism every day.

Love CJ xx

Salute said...

It is sad that he wasn't diagnosed earlier, but with God and his lovely family I am sure that he will get the help he needs. Have a great week.

david mcmahon said...

Like you, Maggie, I recall Crystal's post well.

Anonymous said...

I wouldn't beat yourself up over not speaking up sooner. So much was going on in his young life, it would have been hard to tease it all out. The important thing is now and the services he is getting and your daughter being his advocate. The school can be so frustrating but you have to be tough and firm. He is beautiful and with the love of his family behind him, he will continue to thrive.
I love the photos, you have a beautiful family.
XXXXXX

Unknown said...

Congrats on the POTD!
Nicely done!
~AM

April said...

Hi Maggie ~ I believe that strong family support and love can overcome and allow us to cope with whatever hurdles come our way. Your daughter and the entire family has had so much to deal with - as always I am sending positive thoughts and warmth your way. You are a strong advocate for your family. Beautiful photos which show the love and friendship.

Sandi McBride said...

Maggie, there are so many wonderful Grands in here dealing with their Autistic family members...I'm glad that Rick is finally getting the help he needs! I hope you've met Jeni at Down River Drivel, as well!!!
hugs
Sandi

introspection said...

Hi Maggie, My first time here. Over from David's POTD. This is such a touching post, but don't be too hard on yourself. Your grandson is very lucky to have a bunch of doting family members. He will do well, god willing. Here's wishing you, your daughter and Rick all the very best in life.
Take Care

Eddie Bluelights said...

Very moving story and I hope Rick can be helped, thus improving his life. Congratulations on POTD. Eddie

Jay said...

Ah .. autism. Such a difficult thing to diagnose and wonder about. One of my older son's schoolfriends, P, has Asperger's Syndrome, so I do understand. It wasn't always easy to entertain him, but I was always so proud of my son for making no distinction as to physical or emotional differences, or differences in wiring, as in this case. He liked him and that was that.

There is no reason to blame yourself for the late diagnosis. I know how hard P's mother worked to get her son's condition diagnosed, and it was still a late diagnosis. Maybe a dx of autism simply cannot be hurried?

Came over via Post of the Day! I'm glad I did! :)

Unknown said...

There are so many programs out there for Autistic children, and so many that are willing to help, but some schools WILL allow a child to fall behind and not go the extra mile to help.

I have a friend at work whose husband is an attorney, and he had to go to the school and threaten to sue them if they didn't do what they are supposed to do. And there are many, MANY blogs regarding autism. I'm sure you have searched as well. I wish your daughter and son all the luck and help they can get.

Hadriana's Treasures said...

Maggie, what a lovely post. It was great to hear about all of your grandchildren. They are special as you know...in whatever way.
It is always easy to say "what if?" but I am especially guilty of that...

I agree with what everyone has said here. The main thing is that the autism is now recognised and you all seem to be dealing with it superbly.

Thank you so much for your kind comments over at my site. Much appreciated. Big hugs Hadriana x