Tuesday, March 22, 2011

My Son Harry

My heart is breaking for my son Harry and for me and we had such a terrible time yesterday.  Harry has mild autism. It is mild but significant enough for people to notice he's somewhat "quirky".
Harry of course has been blissfully oblivious to any problem and has floated through life in a Fae fairy sort of way, while mummy has watched and hovered for 8 years wringing her hands and exhausting all avenues in any attempt to help my son.

Yesterday my lovely big boy asked me the questions I have been dreading since he was 2. He is 8 now and is getting more aware of his peers. .So we were snuggling on the couch when he asked me quietly "What's wrong with me mum? Why don't I get invited to birthday parties? Why don't I have friends? Crack!!! That was the sound of my heart breaking !!  In the past I never thought about telling him...It was always my problem and his dad's never something to burden him with, he doesn't grasp things like that anyway. But what if it made a difference? I thought. What if making him aware of his issues (being old enough now) he might be a little more self regulating and try and curb some of his not so socially acceptable nu isms.OK I thought I would give it a shot
I asked him lots of questions about his thoughts and why HE thought he was different eventually I told him quietly and slowly that he had ASD and of course he didn't understand, so we watched some tapes some parents of other little boys had posted on YouTube (yes everything goes on You Tube!!) that also had high functioning Autism. The little boys were just like him....Imaginative, serious, earnest, complex, bloody hard to have a conversation with and struggling to fit themselves into a world that isn't too comfortable for them. 
He DID NOT LIKE IT ONE BIT and got upset. Ran off screaming and slammed the door. I guess if I was him I would do the same.
It's not fair to put labels on kids....but sometimes you have to...the schools want the labels, the government want the labels and as parents you need the labels to get the support your child desperately needs, so you can access the Speech Pathologist, Occupational Therapist, Child Psychologist and extra Tutoring and Special Education Teachers. You have to label your child. But I didn't want Harry to think I labelled him. I just wanted him to understand that there was a reason for his uniqueness and that there were lots of little kids like him. Maybe I did it the wrong way? Maybe too early I don't know...All I know now is I feel like I've spoilt something for him. Ruined some serenity he had. So now I am sitting in the shop and am supposed to be writing about new furniture but can't as I'm feel too heavily burdened with mother guilt. Perhaps that is why I am blogging about this..... usually I don't talk about it let alone write about it on such a far reaching platform ...and probably many people that know me will be very surprised. It's not that I'm ashamed or embarrassed as there is absolutely nothing to be ashamed of. It's just so personal and painful and close to me that it does not occur to me (usually) to discuss it.  

There are many different areas in Harry's life that are challenging for him and therefore also for me, but I have (as mummy's do) hitched up my belt taken big breaths and just forged ahead.  But the thing is sometimes mummy's fall down, they need back up and support from people that have been where they are and can say "hang in there." I want to know How to get the parents at school to invite the Harry to parties? How to get the kids to understand when Harry has a meltdown that it's not his fault...that he just can't cope with all the stress and anxiety that he has to calm himself by hiding under bean bags!??!
 I KNOW he is loving, caring, happy and a beautiful boy but how can I shadow him everyday and say to people "look how marvelous my son is!! and you would know that too If you would only take time to find out!!" Talk about Helicopter parenting !!!!
Anyway if anyone has any words of wisdom for me or advise It would be greatly appreciated. Because Harry's teacher just called me to say she wants an interview and the nanny just quit after 2 days (this is my 5th in a year) and mummy has fallen down again!!






Harry
Us

24 comments:

  1. What a heartfelt post. Having two little children my heart broke when reading this... when you sat on the couch and he wanted to know why he is different.
    It would be so great if Harry's teacher could read this very post. I hope upon hope, that some compassionate kids come his way, and a few friends are on the horizon.
    Hug to you. I feel for you.
    Sonia

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  2. I don't think for a second you made a mistake by telling him. He asked you and you told him the truth in what sounds like it was in a very supportive way.
    I really feel for you and Harry. It sounds like you are doing an amazing job of raising him. If just his schoolmates would be a bit more open.
    What a moving post x

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  3. No specific advice for you Melinda, but it's obvious you love your son madly and would do anything to help ease his pain a little, which is what every kid deserves. He's very lucky to have such a loving mum, so remember we all make mistakes, we all fall down (even if it doesn't look like that from the outside) and we all just muddle through the best way we know how. Take it easy on yourself, K xx

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  4. I really feel for you after reading this post. I hope that writing it has helped you in some way. Whilst I have no direct family experience of autism, I have worked with young people and their families in a previous job role.
    I know everyone is different, but as Harry's peers get older they will understand him a bit better.
    Hang on in there, it sounds like he has an amazing, caring Mum.
    x

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  5. Both my boys have High Functioning Autism (8 & 6) Both Aspergers and the older maybe also ADHD.
    I guess I have been a little luckier than you in that they have each other and go to a great, very supportive small school.
    It's very hard to know what its like for them in everyday circumstances.
    I have found that the 'aspy's at school seem to find one another and hang around a bit (I'm seeing Big Bang theory in 15 years time - lol)
    The thing that keeps me going is knowing that these conditions have always existed and many of the great minds were probably ASD but of course never 'offially' diagnosed. We are lucky that there are people who can help our boys find their way to a happy and fulfilling life and we are the ones to get them there. Bloody hard with a job and home as well. Just getting them through their day is a full-time job in itself.
    If you want to talk or vent or just know that there is another mum with probably some of the same sorts of issues as you I am happy to listen. My email is
    ibireneb@gmail.com
    Irene xx

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  6. Hi, I have no educated advice just a pleasent experience.last year my son played soccer in an under 8's team, there where 8 kids on the team, 7 on the fiel at a time. 2 of the 8 boys had ASD. The coach was fantastic & treated all the boys as equal & it was the best season ever, they all had a fantastic bond & displayed such wonderful sportsmanship & even completed the season undefeated. Whenedver one of the boys with ASD got the ball the others would cheer them on encourage them & give them a pat on the back. The boys mums both commented how much there kids grew in confidence & started to develop better skills for participating in things at school, especially socially in the playground.
    Not sure if this is something do able for you guys, but it truly was a lovely experience!
    Good Luck with Harry!

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  7. My heart really goes out to you as a mum, doing the best you can, second guessing yourself, and ultimately wanting the very best for your son.
    My involvement with ASD is limited. I am a prayer partner in a program called Kids Hope (World Vision)where mentors go into primary schools and spend time 1 on 1 with children that benefit from regular focussed attention. The mentor I support found out today that the young boy we support has just been diagnosed with ASD. I am planning to do a bit of research as I am sadly ignorant.
    I would love to add Harry to my prayers if this would be okay with you.
    It was great to read Irene's comment. It must be somewhat of a comfort to know you're not alone in this.
    Angex

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  8. I'm thinking of you... what a heart felt beautiful post!
    Harry will find his way and so will you life has a funny way of working things out eventually, it's just hard getting there.
    If people practised more kindness and understanding in their lives it would trickle down and reach their children and the world would be a better place for us all!
    Keep on talking it always helps...
    Amanda XX

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  9. There is a child of a similar age to Harry's at my kid's school & at the parent info night, the teachers explained, with the parents' permission, all about the child's ASD. As a new parent to the school, it was good to know this child has ASD & now I won't be thinking that perhaps the child is 'naughty' or 'not disciplined'. The teachers explained how they would manage any 'meltdowns' and what strategies were in place in the classroom. This has been very helpful to know & I can now talk to my child about their interactions with the ASD child & how we are all different & can contribute and be friends in so many different ways. I'm all for explaining things up front. It's certainly helped me and my child be more understanding.

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  10. Hi Melinda, my heart reaches out to you. It's hard being a parent at the best of times so I can only imagine your extra challenges and frustrations. I think the previous comment (from Anonymous) is a good idea. Understanding and support from Harry's school environment would probably help him a lot and help him develop friendships. BTW.. he really is a beautiful boy, they both are. x

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  11. http://melaniejai.com/

    Have a look at the above website. Melanie is a friend of a friend from when I lived in Gladstone. She is an artist and has a son of a similar age with ASD. She currently has an exhibition all about her journey with ASD which is called "Through the Looking Glass". Very confronting. Very emotional. Maybe she might be good to talk to? She's very nice ... tell her Jillian ex-Gladstone said hi!

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  12. My heart broke for you reading this post! I know that feeling of watching other people struggle to relate with your own beloved boy and wanting them to understand that's only a small side of him and that he's really a sensitive, lovely, wonderful boy. We all want our babies to have friends and feel included and Harry's concern about that is heartbreaking! We've been through a bit of this with one of our boys, they say he's 'somewhere on the autism spectrum' and we await a meeting with the psychologist. There is no harder job than the full-time love and worry of being a mum, and all we can do is provide guidance and a supportive home environment- which you obviously do! Hang in there, you're doing a great job! Naomi xx

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  13. If you believe that everything gets better, then it will.

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  14. Thank You to everyone for your heartfelt and thoughtful posts. I have received many emails from mothers with beautiful children who are struggling with the same issues that my family is facing. It has helped to lift a heavy heart. Even though this is a blog about design it also a blog about me, and my children help to make me who I am. Thank You xx

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  15. I'm a fellow Qld mum with a 12 year old son. My heart hurt for you as I read this post.

    If he's not being invited to birthday parties then I think he's at the wrong school. My son started at a one class per grade school in prep. He had one diagnosed ASD, one undiagnosed ASD, a blind student and deaf student in his class/grade of 25. It was fantastic. Because they all started together so young, while they knew their friends were different no-one thought anyone was strange. It taught them all lessons of tolerance that have endured into high school.

    I'm still in a state of shock that your son would be ignored like that. The general rule on parties was you either invited the whole class, or just all girls or all boys - this happened right up to grade four.

    I think you need to find a place where you and your very special boy will fit in.

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  16. Well I feel like jumping on a plane and coming over to give you a good warm hug! Such honesty has left my heart breaking for both you and for Harry.

    I see that you have received lots of good advice already, so my little comment is really just to say "hey, hang in there, things always get easier as they get older and can understand more."

    My youngest son was born just a little differently. We always knew something wasn't quite right ~ but numerous health professionals just
    ummed and ahhed and said No, nothing seems to be the matter. We struggled on, what else can parents do? Eventually, in grade 2 he was lucky enough to have a teacher who gently suggested that he may have a Proprioceptive Disorder. A "what" I said. I could barely even spell it, let alone remember its name. She put me onto an amazing occupational therapist who diagnosed him as such, and for our family, life changed overnight as we finally understood what was wrong!
    We couldn't fix it straight away, but we understood it and that made it so much easier. And as he gets older, he is understanding it too, which makes him much more accepting and less angry that he was just born different.
    So I guess what I am trying to say is, don't beat yourself up. You were honest with Harry ~ which is the hardest thing to do at the time because of the hurt ~ but it is the beginning of him understanding, and then hopefully accepting, that just because he is different it doesn't mean that his life will be any less amazing.

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  17. I don't think you did the wrong thing telling him and showing him the images. It is a hard thing to explain to anyone let alone a child. My daughter has been diagnosed with Aspergers and it is a big learning curve for our family. A book we found useful trying to explain it to her was "All Cats have Aspergers" by Cathy Hoopman - this may explain part of ASD in a simpler way for him. Good luck with everything.

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  18. I wish I had the perfect advice for you, but all I can say is that he is leaps and bounds ahead of so many children out there because he has a mother who loves him like you do.

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  19. Hi Honey

    I want to say although your situation is different, it is also 'normal' at 8 to ask these questions. Autism or not. most eight year olds feel that they are left out. My son, who I think is a funnny, happy, clever, kind, kiddo, often eats alone. Although he prefers craft/music club to sports.. He was suprised to get told he couldn't go to a friends birthday, because "he didn't play soccer".

    We should accept and embrase diversity. It is what makes us unique and interesting.
    Our job is to help them understand , it is ok to be different. He will learn this with time.

    All my love to you
    x
    D

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  20. Hang in there! I received the best advice when pregnant - as a Mum I would feel guilty no matter what decision I made. If you care and want to do the best by your kids of course you will second guess yourself. Im a big advocate of changing care & schools if you arent happy. Harry looks like a gorgeous kid! In no time at all he will find friends who see him.

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  21. What a wonderful post and if it helps, I think you handled it just fine. Never easy. My daughter has a girl in her class (age 10) how has autism and she seems to be the only one who understands and has befriended her. She knows that her outbursts are not within her control but I also talk to my daughter about it.
    I just have seen the most amazing movie that was on HBO in 2010 in USA and now in Ireland on SKY Atlantic called Temple Grandin (it is based on the life of the real and still living Temple Grandin) - Clare Danes plays Temple - it is an absolutely amazing movie and it will give you hope for the future of your son and what he'' be able to accomplish. Stay strong - he has your love which is the most important thing.

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  22. Hello,

    My daughter is 10 and has learning disabilities and experiences some of what your son experiences.

    She doesn't get invited to parties. I started inviting a group of the girls over to our house for a designated activity, usually associated with a holiday; coloring easter eggs, halloween trick or treating, making gingerbread houses. I never just invite to come over and play. That is a failure for our situation.

    I usually get about 4-5 girls to come.

    Also, I started a girl guides/scout troop so that my daughter could have social interaction.

    She still only gets invited to about two birthdays a year; but the other events I mention above are some compensation. It is a lot of work - and rest on my shoulders; but frankly, otherwise she would have little social interaction because people don't invite her.

    A mother I met when in America for one year, has two autistic sons. At the outset of the school year she sent a note to all the parents in the class explaining that her son has autism and that it was important for him to have social interaction...and that if any of their sons would be interesting in helping with the one hour of social interaction after school once a week, to contact her. She said that every year she gets at least one parent that responds for this. She said that most of the kids have been neurotypical.

    Another piece of advice I will throw out that was given to us on the brain tumour chat group was from a fellow parent. She said it is her goal for her child to have one good friend a year. The definition of "good friend" may differ from what it would be for a neurotypical child; but this helped me to have something to strive for and worked towards rather than running around with no direction in the friendship area for my daughter. If she has one main consistent friend and we can "nuture the relationship through the school year, I feel very satisfied.

    I have often found that I also need to talk the parents of other children that I see befriending my daughter. I have found the following words, "Sue has been treating my daughter very good. That is something that only a confident child can do. You have a wonderful child."

    I have found those words go a long way to developing a relationship and trust with the parents of "friends" of my daughter.

    I hope some of my words help.

    You are a good mom making good decisions : )

    Ann

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  23. Hello Melinda,

    So easy to give advice, but the more YOU can talk about it the better. Have similar stories from two sets of relatives of mine. One is from my extremely well spoken and very traditional Italian cousins in Sydney. Lets just say the joy they had at producing an heir to take over the so many generation family business has needed a re-adjustment. But sometimes action speaks louder then words. My son Jamason is 9 and has spent plenty of time interacting with his cousin who is identical to Harry. We just recently enjoyed a 10 day cruise together so he has seen all the highs and lows. In other words, I can vouch for him. I am supposed to be meeeting with Michael to talk boats tomorrow morning. Would love to bring my son Jamason up to play with Harry if it can be organised. Keep it simple, it will be fine. Just get Michael to send me a text and it will happen. Regards, Jason Chipp (Ensign) P.S. Jamason has a peanut allergy, just so that you know.

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