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Well I have been putting off this post for  weeks now.  Some of you may have noticed posting has slowed greatly around here.  My family has been experiencing some difficulties.  I thought I could just keep “blogging” through as I normally do. For the most part I try to keep this blog a happy place. Often it is my counter balance to a very stressful life. I think I have only mentioned it once. Today I finally decided that really wasn’t helping anybody and in many ways  I am not being authentic by pretending everything is always okay. We have been receiving a tremendous amount support from our friends and in turn if there is anyway possible, we want to pass this goodness forward. We hope in some little way that in sharing our struggles at least one of you will know you are not alone.

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My oldest son, whom is now 16, has Asperger’s Syndrome.  Over the years we have certainly had our ups and downs. For the most part things have been manageable, but for the last couple of months it has been difficult.  We finally realized we could no longer help our son alone.

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So as I write this I am in Denver with my son.  He is in a day treatment program at the Children’s Hospital. It has been bumpy and we often don’t know what the day will bring. We have been here over two weeks. Thankfully my husband and other children were able to join us for one week and experience  some family therapy that was wonderful for building our family back up. I think this will be our final week here, fingers and toes crossed.

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I guess my point in sharing this is to let you know if you find yourself in our spot, you are not alone. I wish I could say something profound to make your situation easier if you too find your family in crisis — maybe that will come later.

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We are learning some valuable lessons:

Rely on Friends

This would have been far to difficult to handle alone. From the former autism consultant graciously opening her home (indefinitely –poor thing) to us while in Denver to the countless friends that have watched our children and made my husband meals, to those friends knowing this adventure would be difficult financially thus sending us off with money, we have been helped beyond belief.

Be Educated.

In the beginning we were, then we stepped away. This never goes away and this is one time ignorance is not bliss. It would have served us well to have kept reading and learning.

Sharpen Your tools.

For us when things went smoothly we closed up our tool box. Looking back we should have used the calm peaceful spells to make sure our (and especially our son’s) coping skills, management skills and tools for living were being honed, practiced and perfected.

Stay Connected.

There is power in numbers. Remember there are other families  dealing with similar issues, really it is never necessary to feel like you are crazy and or alone! My family is living proof.

Be thankful.

Oh believe me this is hard some days, especially now that my life has come to a screeching halt. Everyday though we are reminded through our friends’ and family’s  love and care of God’s unending provision for our lives. How thankful we are for their love and support.

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We are thankful for the countless doctors and clinicians who have taken the time to learn the special nuances of this disorder and make it their life’s work to help these children.

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We are thankful for those teachers that don’t give up, who often are at our house going the extra mile to help our son succeed.

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We are thankful most of all for this amazing bright young man whom we have the honor to call our son.  Daily his obstacles are great yet he keeps putting himself out there. We all could learn from his determination!

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So this is why I haven’t been regularly posting and it might take awhile to get back in the swing of things when I return home, but please don’t be a stranger here , hopefully you can always find something fun in the categories. This blog brings me so much joy! Thank you for stopping by— I appreciate your presence more than you will ever know!

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The photos were taken by my husband on a bike ride through the mountains with a friend and our boys last week.

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Comments

  1. Wow, Cindy. Thanks for being honest and real with your readers. I have a friend who has an 18 year old son with Aspbergers, and it”s been a hellish ride for her. She is such a sweet lady. She loves her son dearly, and often things seem to be fine. But the struggles are so intense when they come. And her husband is enlisted in the military and is serving in Kuwait at the moment. My friend lives on the other side ot the country now, and I cannot go over to put my arms around her anymore. I want to give her your link so she’ll feel less alone.

  2. Good for you! It is sometimes very difficult to be a mom and know something isn’t quite “mainstream” when you look at that child and see nothing but love and perfection. My son also falls on the autistic spectrum, and it is a daily journey all in itself. We are very lucky, his symptoms are very mild comparatively. I wish you the best and give your son a hug for me. One for you too~mom to mom.

  3. Thank you for sharing this piece – it comes at a very poignant time for me. My 7 year old had been diagnosed in another state as having Aspergers, but since moving, her new school told us that the diagnosis no longer fit for her…. but I received her school report for her first semester at the new school and I was SHOCKED. The teacher mentions that she cries ‘all the time for no good reason’ and needs to ‘manage her hurts and she will increase her circle of friends’ – I sat down and cried. I feel so neglegent for going along with the school, ignoring my instincts & so much of our hard work has gone by the wayside – I knew she was being more difficult at home again, but she never told me about school. So thankyou thankyou for your post – it’s given me the push to be even more determined for her. Bless you & your family. You are such a great Mum.

  4. {{{HUGS}}}

    Our 5 year old son is Autistic. He was diagnosed at 25 months old. I truly sympathize with you and your family. I also am afraid our days, like yours have been lately, will eventually face us.

    As well as our family blog, as listed above, I have an autism blog I recently started. http://www.hugsbythepound.com

    Take Care.

  5. Those lessons are every day life lessons. Thank you for reminding, educating and sharing something so very personal to you and your family.

  6. Thank you so much for your honesty in this post. My husband and I are also affected with ASD- both our daughter and son are on the spectrum. It is a difficult road to navigate- luckily we have a wonderful support system in family and friends. I will keep checking your blog for updates- and you and your family are in my thoughts and prayers.

  7. My friend Jessica sent me the link to your blog. Yours is one of her favorites.
    Thank you for finding and sharing the lessons in your experience. My 12 year old was diagnosed with Asperger’s in May and we spent a week at Children’s as well. The few weeks leading up to that point were some of the most difficult of my life. His struggle was frightening.
    This has been heartbreaking and can drop me to my knees in tears. My beautiful boy has so much – he is funny & bright & so sweet. But he lives so much inside his head that understanding him & his needs takes a sensitivity that doesn’t come naturally to me. I have let go of all expectations of him, which isn’t the best I’m sure, but he has had a lot less stress.
    We are now in the midst of getting his support team in place. We’ve found a “friendship group” and are looking for an occupational therapist, speech therapist and individual therapist who specializes in Asperger’s/autism spectrum. I try to be hopeful, but mostly I am scared.
    I truly appreciate your words and I’m sure I will refer to them often.
    Thank you so much.

  8. Just popped in for the first time in a while. I am so thankful that you are talking about this. I will be forwarding this on to my sister who’s son is 4 and was diagnosed high functioning a year ago. Thank you!

  9. I have loved your blog for a long time and have made your cute little tutorials with my three daughters on more than one occasion. My youngest is also on the Autism spectrum and was diagnosed with ADHD/ODD in October of 2007. She started a day program at a great children’s hospital in our area in November of the same year. She was only 4 years old. I felt every emotion imaginable and worry each and every day about what her future holds. What kind of child she will be when she is 16….but she just graduated Kindergarten and is looking forward to a fun filled summer and I could not be more proud of her. Thank you for the tips. I find that education is the most important and sharing with others can be very enlightening for them as well as healing for you. I wish you all the best.

    Mandy

  10. I WISH you the best!!! I wanted you to know that I love your site. I have made a few things that you have posted and LOVE them. Thanks for sharing your talents.

  11. There is power in honesty. Thanks for sharing. My good thoughts are with your family.

  12. Thanks for having the courage to share. You and your family are in my prayers.

  13. My great-nephew also has this. It is a difficult road to walk. He is about the same age as your son. This boy can’t read or write but is great with the “dragon program” on his laptop. just a little f.y.i. I have a friend that is a special ed teacher and I asked her what will this guy do for a living? and she said that they make great “lab” rats and could find a cure for some disease maybe…..and someone else will take the credit for it…but it was encouraging that he could work with no reading and writing skills.
    It sounds like you have everything covered and we are all here for you if you don’t.

  14. Hi, I have been following your blog for a while now getting craft inspiration here and there. I read the post a couple of days ago and you have been on my mind ever since. You blog is full of craft goodness and even this post. Your heart must be overflowing. I pray that God continues to bless you and your family. You are not only helping your son but I’m sure this post is helping others with special needs children. God Bless

  15. I will be praying for your whole family. I have a cousin with Asperger’s who just finished his first year of college. I have seen how bumpy the road is, but am glad that you are seeking the help that you need, not just for your son but for your whole family!

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