Sunday, August 7, 2011

Life With Autism

Today I'm so happy to have Betsy from My Five Men guest posting.  Betsy and her blog have been a big encouragement to me as a mom and housewife.  She faces some unique challenges as a mother.  Her positive, cheerful attitude makes every visit to her blog like a pleasant chat with a friend.



Hello! :) My name is Betsy. I am married and have 4 sons. Our oldest is Taylor. He is a normal, healthy 20 year old, a junior in college and majoring in business. And we have triplet boys. Harry, Spencer and Alex are 17 years old and they have autism.



The more I thought about how to describe my life with three boys with autism, the more I felt like this post would be too long, too complicated and too overwhelming to write! I was afraid one detail might lead to long explanations and it might be easier to write a book! :) But I've finally concluded that maybe I can touch on some highlights and low-lights and if it in any way leads a reader to have some compassion on a family who is dealing with autism or if it will lead to a family with autism to be encouraged, then that would be great.



The autism spectrum is huge! A child is diagnosed with autism every 20 minutes. What used to be one in 10,000 is now 1 in 120. And the diagnosis is broad. Someone with autism can seem completely normal to people around them. They may have some quirky habits or compulsions. They might need some tutoring in school, or they may be lower functioning, nonverbal and obvious in their diagnosis. My boys were completely normal, healthy guys until just after their 18 month vaccinations. Now I know that there will always be controversy as to whether the preservative thimerosal had anything to do with their autistic symptoms and that it may not ever be proven. But let me just say that thimerosal (mercury) used in the vaccinations in the 1990's was 100 times the amount the FDA approved for safe dosages in adults. And that was for a single vaccine. So, imagine when my boys were given combined vaccinations (to save us a trip back at a later date as the nurse stated) how much mercury was injected into their little bodies. Mercury poisoning has almost identical symptoms as lead poisoning....and autism. They soon lost the few baby words they were saying, lost all eye contact, didn't react to noise, started playing alone, lined up objects instead of playing with them appropriately, and all the other typical symptoms. Fortunately for children now, immunizations can be given on a better schedule, preservative free, and autism diagnosis and treatments are earlier and vastly improved than they were 15 years ago.



So, jump forward to today, when I have 3 nonverbal, teenagers. They are still improving little by little, doing well in school (special ed. classroom with aides and therapists) but life is certainly not normal. In fact, it is downright difficult. They have food hangups, feel the need for sensory stimulation in the form of hand flapping, rapid blinking, lining up objects, etc. Crowds and loud, noisy places bother them. They feel anxious out of their normal routine. They can become frustrated if they cannot communicate effectively, especially with people who do not know them, and on we could go. They lack social skills and awareness. They don't embarrass and don't pick up on things that we learn by imitation. Because of these things, it is difficult to do normal family activities. We can't all go eat a meal at McDonald's, for example. Only one triplet would eat the food and he has been known to grab someone's fries or coke as we walked by the tables. Yes, it's true. Ha ha. I've been humiliated so many times that I don't even embarrass anymore! lol. Vacations are extremely difficult (we have tried a few) and it has even become more stress than it's worth to have company for dinner or even try to have all six of us sit together to eat. (Someone invariable looks at our plates and gags/throws up just at the thought of having to look what we are eating.) They have different diets among themselves, too, I might add. So I make their individual plates for each meal, and then something totally different for the rest of the family.



We have problems with an inconsistency in their motor skills. If they are interested in something, they are very motivated and very skillful, such as typing on the computer to search their favorite Internet sites on the history of the railroad or to find a favorite movie clip or song on you-tube. But to get them to shampoo and rinse their hair is a real effort. Work an electric razor to shave themselves? No way. They get 'fish hands' as I like to call them...dead, floppy and weak. So we are constantly working with them to do more things on their own. They can dress themselves but can't tie shoes, and usually all of their clothes will be on backwards...even the underwear. :) And the list here could go on forever. They don't have healthy fears, such as traffic or strangers, which keeps us on our toes! :) And if you read my blog with any consistency at all, you know that they leave the refrigerator open, faucets running and are known to turn off the washer and dryer mid-cycle because they don't like the sound. Yes, never a dull moment here and we are always counting heads, monitoring activities and checking for anything dangerous or unusual happening. :)



My husband and I waver back and forth in needing help, asking for help, or not. Most of the time it is more stress than it is worth. People were much more willing to help out when the guys were adorable little toddlers. And let's face it, helping a teenage boy with toilet paper or getting in and out of the bathtub isn't as fun and some people are just plain uncomfortable with it. We have people volunteer to do something with them but quit after a time or two. I don't think they realize how long it takes to learn each boy by their habits, mannerisms, be able to anticipate what they would like or not like and why. And all three boys are different! It takes months of contact to be able to know them well. Since they are all autistic and triplets, they tend to be lumped together. Most don't realize that something Spencer might love to do or at least tolerate, might send Alex into a rage. We've had kind, well meaning people offer to help that have fizzled out after only a few tries. And on the opposite extreme from that we have been burned and hurt by what turned out to be nosy, gossipy people who really just wanted to be 'in the know' about our family and use the information against us. News travels fast in our little village and I don't think they realize how it eventually gets back to us, too.



Autism has taught me a lot. It's shown me how strong and resilient I can be. How the sun comes up even after the most horrible of days. And it's increased my faith in God and broadened it in directions that I never thought possible. Do I have all of my 'why' questions answered? No. But I'm a better person because of what I have gone through and continue to live with. I find myself content when others are complaining about the pettiest of problems. I don't sweat the little things. I feel I have a broader perspective of life and remember to see the big picture. And I feel I truly find beauty and happiness in the smallest of life's gifts. Why does God allow some people easy, carefree lives and others to have such heartache? And I worded that last sentence the way I did for a reason. Did God make my boys autistic? Does he give someone cancer? No. I believe he knows it will happen and still allows it to happen even though he could prevent it if he wished to. Yes, he allows the good and bad to happen to us. Being his child doesn't come with promises of a carefree life. Life is full of ugliness, hurt, and hardships. He knows what will happen and offers us strength and grace if we ask for it. Why? Well, for a lot of reasons, I think. One answer is in a scripture verse on my sidebar. "What a wonderful God we have. He is the Father of our Lord Jesus Christ, the source of every mercy, and the one who so wonderfully comforts and strengthens us in our hardships and trials. And why does he do this? So that when others are troubled, needing our sympathy and encouragement, we can pass on to them this same help and comfort God has given us." 2 Corinthians 1:3-5.



If you know a family that is dealing with autism, I hope you will try to encourage them. Simple things can mean so much. When you see them, don't look away or ignore the child standing right there. Say hello directly to them and use their name. They might not like to be touched so just be friendly, get down on their level and look in their eyes if they will let you. Include the whole family in circles of friends and try to make them feel comfortable. They will appreciate your extra effort so much. And if you find your interest goes beyond those simple things and you want to become more involved with that family then start to get to know that child better. Learn everything you can about them so you can be a reliable sitter and friend if they would ever need you. But most of all, we families of kids with autism just would like some love, acceptance and genuine concern. A little kindness goes a long way.





And if you have a child with autism, I hope I've encouraged you to keep plugging along, be thankful for the little triumphs and know that you aren't alone. Get the best treatments you can for your child and don't be afraid to speak up for them and for yourself. I would also say we all need to give up the little chips on our shoulders. I hear, especially in blog-land, mom's of children with autism saying things like "My child is not a puzzle" (in reaction to the puzzle piece international symbol for autism) or "My child is not autistic. He has autism" I just cringe when I hear things like this. No wonder people stay away and don't want to help if you are offended at such things. I'll be the first to say my boys are a puzzle...three big puzzles and all of the pieces are the same color. And out of 10,000 pieces, I only have half put together and many key pieces are missing. It's a perfect analogy, in my opinion. I hate the ultra politically correctness that we can get wrapped up in. I would also remind you to ask God for strength. And, find your sense of humor! Laugh, because not only does it lighten your stress and put things into perspective, but it is a valuable survival technique.



Thanks, Rebecca for asking me to do a guest post! I hope this in some way educates or encourages someone!

43 comments:

  1. Thanks for asking me to do this, Rebecca! :)

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  2. PS ~ I've linked to you and have sent my readers over for a look!

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  3. You are entirely welcome--thanks for your excellent post!

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  4. Beautifully written, Betsy.

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  5. Betsy: thank you for this post. It really encouraged me. We have a child with a different set of problems but we have experienced a lot of what you were talking about with people and how they act sometimes. Our son has PDD-NOS plus early onset Bipolar Disorder. Thank you for posting this. I did learn more about you and your situation. You are certainly right that it takes the small things daily to get us through.

    Blessings,

    Shari

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  6. You are truly a super woman. That is no exaggeration.

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  7. Shari ~ I know you do, and I think of you often! Thanks for reading! :)

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  8. Otin ~ aw, thanks, Michael. xo

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  9. betsy...awesome piece...would love to use it with some of the families that i work with...

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  10. Wow quite the read. You truly do go through a ton, don't know if I ever could. But I guess we have no idea until we have too. Interesting point of view on God's take on it all too.

    Oh and I have no doubt you could write a book on it. Never know could be an idea too.

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  11. Betsy is an amazing woman in so many ways!

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  12. Wow. Thanks for this post and sharing a window to your life. I'm a sister to autistic twins and sometimes hearing someone else's story allows me to feel I'm not alone.

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  13. anonymous ~ sister to autistic twins? Wow...we should get you and my Taylor together to chat! :)

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  14. Betsy you are amazing. Your story really touched me. My son is aspergers and most people don't realize there's anything different about him. But we still have our struggles. I love reading your blog because you make it seem so easy. I want to be like you when i grow up! :)

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  15. AmyLK ~ Oh, and your son is just great, too! :) And heck no, it isn't easy! lol...

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  16. I'm here from Betsy's place. Thanks for asking her to do this. It's very interesting and educating.

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  17. Betsy, you are totally my hero. I am always encouraged by your love for your men and your sense of humor in the midst of very difficult circumstances. Even though I have been following your blog for so long, I learned a lot from this post.

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  18. Wow thankyou for sharing and thanks Rebecca for the guest post!

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  19. Betsy is for sure one special woman. We have two daughters that are bi-polar. Our oldest 44 and youngest 34. They are stable, well educated and have good jobs now, but it is like waiting for a bomb to go off. It may never and it may be 5 mins from now.
    QMM

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  20. Betsy, Thanks for sharing, especially the part about the boys' early lives. I've always wondered.

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  21. Thanks Rebecca for letting Betsy post. And Betsy thank you for sharing your story and life with us. Praying for you.
    Mommy 2

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  22. Betsy, you are such an encouragement not only to parents of autistic children, but also to anyone who has disappointments and hurt in their life. May God bless you and your boys.

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  23. Betsy you are an amazing woman. My older sister has a mentally handicapped daughter who she has raised single-handedly and I know how hard life has been for her but my niece is also such a gem and I love her to bits. I admire your view on life and God so very much and the way you care for all your men. Thank you for writing this post and yes, I too believe you could write a book about your life.
    Kathleen.

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  24. Thank you for sharing your story. I have learned so much from you and your blog.

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  25. Wow! This is such an awesome post from you Betsy.I never knew as much as I learned from your heart today about Autism.I always could sense this must be so difficult but now I realize how much so it is.One thing I agree with is the doseage of mercury that was given was such a large amount,and possibly even though we dont know for sure,that could of likely been the cause of Autism in your boys.I was really saddend when I read the part about how they were all normal until 18 months.This must of been beyond belief when you heard the news.God Bless you Betsy for all you do for them and all you do just everyday of your life.I see you post lovely post your jewlery,you cook awesome things...there certainly is a special place for you in heaven some day,keep positive and keep brightening their lives a little each new day.HUGS!

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  26. Becky~ thanks very much. And the bit about the vaccines is good to hear from a nurse like you. Thanks for your encouragement there, I do appreciate it! Yes, I'll give them hugs! :)

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  27. Rebecca -- Thanks for inviting Betsy to share her heart, what a testimony!

    Betsy -- I'm standing right next to you, longing for heaven, for the day when He will wipe every tear from our eyes and we will be made whole. What a happy day that will be... this broken world is only for a season!

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  28. This was excellent Betsy, an honest and touching side to your daily life.

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  29. Kathleen ~ thanks for telling me about your sister and her child. Just from that you know a little about what I'm talking here.

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  30. Mommy 2 ~ hey, you! How have you been? Thanks for coming by and reading. :)

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  31. Christian ~ that is so true....and I try to keep that thought in my 'big picture' view. :)

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  32. Rebecca, nice to meet you and ty for having Betsy on here to tell some more of her story with Autism.

    Betsy, just having 3 non verbal triplets alone woudl be enough of a challenge for most, but layers that on with all the other challenges, I think it just goes to show that you are a walking miracle. As some one said above, the fact you also bake amazing things, do incredible projects leaves me dumbfounded and humbled really.

    You mention that the immunizations have since changed when your kids got those ridiculous amounts of mercury which coudl have led to the autism and yet you state that autism is affecting more and more--1 in 120 as noted! Why do you think that is? It scares me at the thought of even having children now if I was doing that (mine are all teens as it is).

    Finally, ty for making us all aware of the challenges. if it was even possible, it seems like you'd need 3 babysitters at one time to really make it work for others. I just can't imagine the load you carry. My only hope is that your family and neighbours, and those who know you who read your blog, pitch in as much as possible.

    "Mod Object's" comment is so true. One day, one day...

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  33. Thank you Rebecca for letting Betsy post here.

    Hi Betsy, I too feel you could write a book, it would be amazing. May God''s angels be watching over you and your family. You are a very special group of people. Life is full of surprises and you can only do your best. You are a blessed person and may God bless you with many more blessings.

    God bless.

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  34. Thanks, Mmm ...I replied to you on my blog. :)

    Mrs. Upole ~ thanks so much. You know, you have the gift of encouragement. I've seen it over and over on various blogs. You do it so well. A few kind words can really make a difference, too. :)

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  35. Betsy, I often read your blog and don't say much, but what an inspiration you are! And you are so strong. You give me hope that I can face whatever the world throws at me... it's all about choices in how we deal with things. Your amazing!!

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  36. Christie ~ aw, thank you! But look at you...you ARE the queen of happy, right? ha.

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  37. Thank you, Betsy. (and Rebecca too)

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  38. All I can think about is the number of hearts you have touched with your straight forward words and your open heart. I am one of them.
    Thank you for reaching out!

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  39. This was so wonderfully written, Betsy. I believe you have a story to tell that would help and inspire many. I also hope you will be able to write a book about your experiences one day. {[hugs}}

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  40. Bravo Betsy, you're an inspiration.

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  41. That was so beautifully written Betsy! Thank you for you words and insight.

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  42. Hi Betsy .. I'm so pleased you pointed us to this site in your A-Z challenge for 2013 - April 1st 2013 ...

    Great information ... and I understand more now, though totally appreciate that I can never understand ... your 24/7 care and attention and love you and the family give those boys ..

    as Jenny says above - you are an inspiration and have given me food for thought ... Have a happy April doing the A-z .. cheers Hilary

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