Sunday, August 14, 2011

"Fixing" Autism



Please take some time to view my first attempt at a video blog. Please share, like, and rate the video if you deem it worthy. Thanks!





If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.



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57 comments:

  1. Loved it. It covered everything most of struggle with, especially siblings and insurance companies, at least in our family. Good job!

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  2. Lou- This had me sobbing, b/c I understand every aspect. You see-- I have 4 biological children & all regressed into Autism. The love you have for your daughter (& kids) is AWESOME & she is such a blessing. My kids have made me a better person-- and I echo your sentiment. NEVER GIVE UP. Hugs, love & blessings to your family.
    Tanya McQuaid Schoonveld

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  3. Yes. Yes. Yes. Thank you. Thank you. Thank you.

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  4. beautiful. thank you for making that. my son is also autistic and i'm trying so hard to "fix" him despite divorce, struggling to find work, being a single parent. but he's worth every effort.

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  5. Thank you for your video. I have two girls with ASD that I fight for everyday.

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  6. Lou,
    I have a daughter named Bianca who is 100% recovered. DAN works, toxins in vaccines, pesticides, and all sorts of products sold to children cause it.
    My son is more severe and more work. But don't ever give up. Estrogen protects, girls can recover faster than boys.
    Look me up on Facebook if I can help in any way. David's Autism Daddy.
    All the best

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  7. Some friends posted your powerful video. I re-posted in my blog: http://allinadaysquirks.blogspot.com/2011/08/powerful-message.html
    I hope that you don't mind. Your video is effective, I don't think you need to change a thing (saw a post on youtube about adding photo of Bianca). It's about parenting, awareness, call to action. I find the stark black and white to be dramatic. Using cards and no speaking highlights communication difficulties with autism. Excellent job. Good luck from G's mom (5.5, Autism, ADHD,and much more). I "follow"-ed you, please "follow" me.

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  8. Thanks for sharing this. I read some of your blogs as well. I have twins 12 year old ( boy/girl) with severe autism. My logic is to share not just the sad/depressing and serious stuff about Autism but also show the lighter side. This is very necessary for public to be educated that Autism is not always just a struggle and something to be dreaded about. I dont want folks to be afraid of folks who have Autism or dread to have families dealing with Autism over for social gatherings. I laugh heartily everyday at something or the other my kids do and I dont believe this would have been possible if they had been typical. I have two kids that will be 2 year olds lifelong :-D The fun never ends! Even puberty and hormone struggles are very different and can have a fun side to them. So keep smiling and you will see life is better, even if nothing is "normal".

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  9. I could not agree with you more TP. There certainly are some wonderful moments that Bianca and I share that are so incredibly unique to parents of children with ASD.

    We share deep belly laughs, Bianca is very affectionate and we communicate on a level that is really special. Despite the fact that she may not "talk" to me, we have fantastic conversations. Her body language and facial expressions tell me all I need to know.

    That said, I feel very strongly that there are two separate messages that need to be communicated. One is about the struggle, the other is about "coping". Currently I think it is more important to focus on the struggle so that the "coping" will be easier for those that will be dealing with Autism later on down the road.

    For now, I feel like people need to know how difficult it can be to deal with insurance companies, find therapists, communicate with schools and insuring that these special kids get all the support that they can at an early age so that when they get older they can reach their full potential.

    I do plan on sharing more about the lighter side of ASD in the future, but right now we are in a war... and I plan to win.

    Thank you everybody for taking the time to share and comment on my video and blog posts. The path never seems as tough to traverse when you have people helping you navigate the terrain.

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  10. What a beautifully done video - thank you for sharing it. I believe your experience mirrors that of the majority of families who have a child on the spectrum. You are right that we need more funding for research and more resources and supports available for families right now. I wish you the best as you help your daughter reach her highest potential!
    -Nicole Beurkens

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  11. Thank you for sharing! you brought tears to my eyes...but also a smile to my lips because with a dad like you bianca is sure to be feel better than "normal"...she will feel LOVED!

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  12. Great job. I posted it on my blog too.

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  13. This was the most moving and eloquent post I have seen in a long time.

    No we will never stop fighting for our kids.

    Thank you.

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  14. You did an amazing job. I have a 14 yr old boy with autism. Your video is spreading through Facebook and some have said they will adjust their giving this year . You are already making a difference. No one has ever captured my feelings like you did. I will speak up, I will share my experiences, I love it! Well done!!!

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  15. Really beautiful, really poignant. So glad it was shared with me (even though I'm at my desk at work with tears streaming down my face!) and I'll now share it with others.... Much love to you and your family.

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  16. I loved it and was very moved by it. I posted on my FB and will post on my blog as well http://thisisnotholland.blogspot.com/

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  17. I first want to thank you, I know how hard making that video must have been, this is the very time i have visited your blog and i believe i will become an avid reader (lol). My son is 5, he was diagnosed with autism at 3, it was so hard at first, not knowing what to do, believing i caused it in some way, and watching his milestones gradually disappear was heartbreaking for my family. I shared the video on my FB wall (hope you dont mind). I used to be afraid to take my son places because of his behavior and people with questions, but i realized that was counter therapeutic, i love my son unconditionally i like you just needed to find the courage and be the voice when he couldnt be. My son has autism, but i will NEVER let autism have him. GOD BLESS YOU LOU!

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  18. The post by David's Dad is profound. It's way past due for everyone to simply accept that this is a man-made epidemic and the worst medical blunder ever. Look at the big picture and not the small deceptive print learned by doctors and conveyed to the herd. For real change to occur, we must call it what it truly is. It is vaccine injury to those genetically susceiptible to the genetic material and toxins used to produce those products.

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  19. I always said that Coldplay was the sound track to my life.......my son has Autism, to hear that son and see this video made me weep. I am a blogger as well ( theneurotypicalmom.com) and I have been trying tonged across to people how difficult this all is on parents. We fight and fight and fight and out up a tough front, but sometimes your insides are hurting and you don't want to let it show. thank you for this video! Thank you a 1000 times.

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  20. Had to shut my door to cry in peace. Thanks a lot! Good video. I enjoyed it.

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  21. The tissue box is empty!! My 4 year old son was just diagnosed with ASD this summer. This video is so powerful, I had to share it with my friends and family on FB. Thank you!!!

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  22. I posted this on my blog: www.theslackermom.com I just don't have words, other than Thank you. Simply perfect.

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  23. Oops- forgot to add that I have identical twin boys (2.5) diagnosed the week before Christmas- we are on quite the journey. Putting your two year olds on a bus to go to school 3 weeks after getting an unofficial diagnosis 20 minutes into a speech evaluation (confirmed twice in the next 4 months)is humbling to say the least.

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  24. Wonderful and straight from the heart! We will never stop fighting for our kids. Thanks for the reminder. Your daughter is blessed you are such an advocate for her.

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  25. I cried so hard I had to take my contact outs. Such a moving clip. Bianca and Sarah are worth the fight!

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  26. Lou, as a teacher I see the fight parents have to make for their child. I am moved by your video and am looking forward to sharing it with my fellow teachers. Keep doing what you're doing. Thank you for fighting.

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  28. Thank you.

    Sitting here with tears streaming down my cheeks... We do NEED everyone to want to learn about our kids. To want to find the answers. To want to support their challenges. To want to do better for all families living with autism.

    The numbers do not lie. 1 in 88 military dependent children also lives with autism. We NEED the government (NIH, DoD)and the private sector to come together and put proportional dollars up against this tsunami of autism that is already upon us.

    You ARE making a difference, Lou. Not only is your voice being heard, but you are raising up those of us who stand beside you, too, and giving us support by sharing your story.

    Thank you.

    -Rachel
    http://stimcity.wordpress.com

    [Please support the Caring for Military Kids with Autism Act (H.R. 2288) by contacting your Members of Congress and telling them its not ok - NOT OK - to deny our military families autism coverage. http://cmkaa.wordpress.com]

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  29. Lou,

    Beautiful sentiments that resonate strongly (tearfully) with me as the father of an 8-year-old boy with Down syndrome and some pretty significant behavior challenges that are getting harder and harder as he gets bigger and bigger.

    I'm glad that you talked about Bianca reaching her greatest potential, and that you put "fix" in quotation marks. When I first saw the title on a friend's facebook page I was hesitant, concerned it was going to be about trying to somehow eliminate her disability. But your video makes it clear that your focus is on seeing her for who she is and finding a "new normal," as you put it.

    It's so important that we target our efforts at helping all kinds of people understand that it takes all kinds of people to make a world, and that what we once considered-narrowly-"normal" is just one of millions of variations.

    Thank you for your powerful message, your love for your family, and your advocacy.

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  30. This video is just soo amazing and powerful. I have posted this on my blog (including a link back here).

    On my blog we have started a bloglink/bloghop for parents of children with Autism (running every weekend). I would love it if you would consider joining and sharing with us your posts. http://www.athomemum.com/blog/category/autism-awareness/life-on-the-spectrum/

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  31. I finally got to watch it. It's just GREAT. It covered all my concernes and thoughts and wishes for future of our "not so normal" children. Thank you for this great video!

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  32. Your video moved me. Also, I shared your video on my FB profile. While my son's journey with autism hasn't been the same as yours, I can identify. Thank you for bravely sharing your story. Thank you for inspiring me. We need a bit of that every day to keep up the good fight.
    Last year starting in Sept. through Jan. of this year my son (5 at the time) was hospitalized 4 times for this disorder + comorbidities. He also has early childhood onset bipolar disorder. I've fought the insurance companies, appealed through the Dept. of Managed Health Care, and fought the schools. I have 5 children total. I understand what you have gone through and continually go through. I'm happy to share that my son is doing significantly better now that we have found him a proper placement. It has been a heart-rending process but we have come through with our marriage in tact, which is a miracle in and of itself.

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  33. AMazing, I felt so moved, I shared it too.
    I work with chidren with autism, and I learn so much when the families open up their feelings, I hope my work can help, seriously.
    Ma Inés from Argentina.

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  34. Amazing video! My son was diagnosed with autism about a year and a half ago, he was 2 years 9 months at the time of his diagnosis. The last year has been full of ups and downs, as most parents with a child with ASD can relate to. Fighting the insurance company has been our biggest fight, spending significant amounts of our savings to provide the necessary therapies for my son, finding the therapists that best fit with my son, taking a 6-month leave of absence from work because our school district (we've since moved) wouldn't provide an appropriate program for my son, moving to a school district that would provide an appropriate program, etc. But we wouldn't change a thing. In the last year, my son has made nice progress.

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  35. Thank you so much for this video. It is comforting to know I am not alone... it doesn't make things easier, but it helps.
    I really felt like I could identify so much with what you were saying...
    My little Harry was diagnosed a year ago, and I have spent this last year coming to terms with it. I feel more ready than ever to fight for him, and help him be the best Harry he can be.
    Thank you again for the moving video, I will be sharing it with all my friends and family.
    I will pray for you and your family. God Bless.

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  36. Lou, what a good man you are! We have much in common. Our oldest daughter has autism. I could substitute her name, Lauren, into your blog about Bianca...it is exactly the same story. If you ever want to know about the future....just ask me. My Lauren is going to be 30 this December. She still lives at home (I can't think of her not being here). She is a happy girl...preciously innocent like your friend Kevin. We too have 3 kids. Lauren is our oldest. Can you imagine 30 years ago....there was NO info about Autism....we just knew "something was terribly wrong". She did not "officially" diagnosed with Autism until age 17. I had figured it out way before that. She always had lots of interventions and special schools...all possible because we were on her team and fought fiercely for appropriate services. My other two kids are even more terrific because of having had a sister like Lauren. My son is 27 and he teaches Autistic kids. He calls me almost every day and starts his conversation with "Mom, guess what one of MY kids did today?" (I could weep!!) My youngest daughter is a senior at the University of Puget Sound in Tacoma, Washington. She is majoring in 'Communications" and she is perhaps my Lauren's biggest advocate. Stay tuned to see what she does next. Both of my other kids were always more mature and compassionate that kids their age. They were protective and proud of their sister. My son once wrote on an essay about "friendship" (age 8)...."it is important to choose nice kids for friends so that they aren't mean to your sister (that has some disabilities)". The result is that Lauren's siblings are role models. They have always made good choices with friends and life in general. When people ask "how do we do it?" I say, "We just do it...this is our life...we are SO ok...we are very lucky to have been given Lauren...she has given us much....I could not imagine life without her." ;-)

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  37. Followed a link through Facebook and found your video and blog. Very familiar feelings, I have lost two daughters to genetic issues but many of the challenges were the same. We just wanted them to reach their full potential, and fought for that. I posted your video on my Facebook as well. Rather glad I didn't this song while my girls were live, just a little too tender to handle. Wonderful.

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  38. After a day of "enlightening" an entire school and years of "enlightening" school systems through determination and fighting to be heard, I came upon this in my mailbox tonight. I was beginning to re-think my warrior approach and the answer came to me in this video....never stop fighting for my son no matter what someone calls me, says to me, or denies his rights. Our autistic children are covered under the laws of the Americans with Disabilities Act. Telling people that when they want to be educated or judgmental, can and will stop them in their tracks. Today, in the grocery store, people I didn't know talked about their autistic children to be....and no I was not wearing anything that would indicate I have a child with autism....messages on the tree of life...we are not alone and somehow we come together unknowing how or why, but we do. Thank you for reminding me to fight the fight for him to be the best that he can be.

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  39. Lou I work with children with Autism every day, and I have a special little boy that I am taking care of now. They are the most incredible children, and your video made me cry tears of happiness that you are informing everyone in such a beautiful way. Thank you so much for that, and God Bless you and your family

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  40. Thank you so much for making this beautiful video. My 3 year old son, James was just diagnosed as "mild Autism" recently. I understand your struggles and I will never stop fighting for him.

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  41. I felt this was very powerful. I have four sons, my eldest has autism. I wrote a play about him called Autistic License. His father is a professional actor and he played our son in the original production. Much of what you speak about is shown in my play. I love what you are doing, but I will be honest, I struggled with the "I will fix her" part. I think we need to move away from the notion that these individuals are somehow "broken". I know many high functioning people with autism who find that kind of attitude very offensive. Nobody would ever wish a struggle for their child so I understand the feeling behind this completely and it one that I don't think I will ever fully resolve.
    Recently a theater director who had worked with my son for many years approached me about producing Autistic License, but this time he wanted my son to play himself! I said no for two years but finally agreed. The results went beyond my imagination. We put this on tape. I would love for to check out my website and watch some clips from the play. I think you would relate.
    www.autisticlicenseplay.com
    Best wishes,
    Stacey Dinner-Levin

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  42. Hey Stacey,

    Thank you so much for sharing your feelings and your story. Your son sounds like an incredible kid, and I really admire you creating something like a play that increases awareness in a way that is easier for people to understand what life is like for those affected by autism. I will try my best to make it to your site and check it out.

    I have written in several places about the reason behind "Fix" First off you did misquote me and therein lays the problem. The quote is NOT "I will fix her"... the quote is "I will 'fix' her"... big difference.

    There is a reason why "Fixing" and "Fix" appear in quotes. I am taking a literary license to change the meaning of the word. I certainly would never suggest that any autistic child needs fixing. They are not broken.

    Also, feeling the need to "fix" things that aren't right is specifically a guy thing. If you ask your husband about this, I am sure he would agree. That is another reason for the use of the song and the phrase "To "fix" her". That is how I felt as a man. It was a call to action.

    I hope that clears the meaning up for you. Again, I appreciate you taking the time to share your story and your concerns.

    Best of luck to you and your family!

    Lou

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  43. This is an AWESOME and inspirational video by a father of a little girl living with Autism. This really choked me up... it makes me want to hug my wife and kids.
    I am the father of two kids on the spectrum, Max 9, and Avery 5... My middle daughter, Zoe 8 not Autistic, but probably the biggest protector of her siblings.
    This video brought back so many memories and feelings. Thanks for making it.
    I can't wait to start reading your blog, I have some catching up to do.

    Thanks a lot for doing the video,

    Mike L.

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  44. Hi my fcb friend Tarika just posted this video in our group about autism, and I just can say I cried so much and I can tell is the more emotional video I have seen so far!! What u just said throuhg papers is correct , we don't have support enough from anybody else!! We depend of our own conditions, but to treat autism is so expensive, we lost so much since then and we never know when we gonna stop to spend, my son already recover from autism and hyper, he just need to heal about leaky gut and yeast, but I can tell we spend everything we used to have , and we are under the debts, we don't know how to pay back for ppl , they don't accept money back, but is too painful to ask one by one who can help us !!! A million thanks for the video, and I wish many ppl share your video I loved it and I wish from heart Bianca recover from autism!!!! May God bless your family!!

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  45. I just watched this video with Aurora, my 8 year old daughter with Asperger's (an ASD). What she said to me as soon as it finished was the most brilliant thing i have ever heard! Aurora: "Mommy, I know how to cure autism!" Me: "How honey?" Aurora: "Just be yourself. (giggle giggle)" She truly is a genius. \o/ Thanks for you Lou.

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  46. Lou,
    Your video made me mad in a really good way. We have three children, 2 typical boys and an autistic 6 year-old daughter. Maddie has been in intensive ABA therapy for 4 years and I'm so proud to say she just started kindergarten last week. She is not "fixed" - yet. She has full-time para support while in class with her "typical" peers and then goes to a special-ed classroom for additional work. She then comes home to even more therapy. The stress has been enormous on all of us and I can barely allow myself to be optimistic despite seeing how incredibly hard she works and all the strides she's made. I guess I just feel beaten down, fatigued by all the different forces you describe in the video. And then every once in a while I come across something like your video and it reminds me that I'm not alone, I've had the strength all along and I'm ready to fight again. From one father to another, thank you again.
    Justin

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  47. As I sat in my kitchen and watched this on my computer the tears just streamed down my face. Thank you for sharing your personal story. My son has SPD and the part about not being covered because of "Significant Improvement" speaks to me so well.

    My son was denied early intervention through our county school system saying that he scored low, but not low enough. He is is private speech and OT.

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  48. wow, this video really touched me.. My 6 year old stepson has Autism.. I dont really know what else to add except that I shared your video on my facebook page with the hopes that it will help other people understand the struggles we face as parents of these very special children.

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  49. I found your video on my friend's facebook wall. It made me cry. Thank you.

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  50. Thank you for educating me more on a subject that doesn't get discussed much using facts. I will share this with others. Hugs to you and your sweet family.

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  51. Thank you a BILLION times for such a POWERFUL video! And thank you for sharing your most precious gift... your Bianca! I will be sharing this on my facebook page, my twitter feed and on my blogs.... all three of them!

    Wishing you nothing but love, peace & continued happiness! Blessings!

    Phylis
    (Mom to an awesome Aspie)

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  52. I loved your video. It's a powerful statement for how difficult it is to have a child with autism and how much you are willing to do for her and others like her. Thank you!

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  53. I don’t know but it seems from your story that the 'experts' have caused you more worry than help. I know it is easy to say don’t give up hope.

    When my son was born he too seemed O.K. However, not long before he was 2 years of age I realised something was not right. Eventually he was diagnosed as 'profoundly autistic' and I was told by medical experts that he was a ‘write-off’.

    My husband left unexpectedly before our son Howard was born. I had no idea of his whereabouts. I didn't tell anyone that I was pregnant as I was afraid I'd lose my job.

    Howard is autistic and asthmatic and has insulin diabetes. As a child he was hyperactive. I had to nail bars over the bedroom window because he'd climb on the sill and push against the glass. Once he butted me and chipped my two front teeth when I picked him up to save him from danger. Another time he hit me in the eye with a Corgi bus to wake me and I had to go to work with a black eye and a bruised nose. He was refused education as he could not speak until he was 9 or 10. Doctors told me to place him in and institution and forget him.

    I always worked, there was no choice. Social security money would have been insufficient to keep Howard. He always had a large appetite and his extra large-sized clothes were expensive. I managed to save enough to buy a very old house with no bathroom and an outside toilet. It took ages to clean up and get rid of the mice and cockroaches.

    Many consider Howard as being a "bit odd" but he is popular and has a sense of humour. He is great company and is kind and affectionate. A few years ago we both signed on for computer courses to try to gain an education which we both lost in our youth. Howard became so proficient that the tutors nicknamed him "cyber-junkie". We were both thrilled to gain our computer science qualifications and went on to complete our studies in local universities. Howard graduated from University - computer science. Our lives were transformed. We won despite stigma and are very happy.

    We were very lucky as we survived despite the system - not because of it. I hope eventually you and your family will be lucky too.

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  54. We finally made our clip...wanted to share it with ya! Thank you for the inspiration! http://mymommyhoodjourney.blogspot.com/2012/04/awareness.html

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  55. Hia, my friend nicky has shared this a few times on her fb wall, Nicky is an inspiration to me, I have shared your link to the fix it video on my blog, if there is a way I can put it on as a widget please let me know, bianca, all your children are beautiful and you are an inspiration.

    ps my late sister had autism without my friend nicky, id never have put 2 and 2 together

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  56. http://eenymeenyminym00.wordpress.com/2013/01/19/autism-not-as-rare-as-you-think-get-educated-i-did/ this is the little bit, on my blog, I will happily share all things autism that arent myths yet true inspirations, nicky said you are on her friends list, good then you will know what a beautiful person she is, a great family unit they have.

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