Autism speaks…

June 2, 2009 · 161 Comments

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.

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.

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.

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.

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.

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.

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.

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!

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!

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

Updating...

161 Responses to “Autism speaks…”

#151 Darla Elliott July 8, 2009, 9:31 am

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.
#152 MamaMoon July 15, 2009, 12:24 pm

Thank you for sharing such a personal story. My beautiful, perfect, 5 year old son has Asperger’s and has made great strides since starting a Developmental Preschool in January. He starts kindergarten in a self-contained classroom this year but they have high hopes he will be mainstreamed by Christmas.

While difficult, I think sharing your story, your experience, as well as your sons, is very helpful to many families experiencing similar things.

Thank you again and I hope you are comfortable enough to continue sharing your journey for those of us still trekking along.
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#154 Ginny August 25, 2009, 9:01 am

My dear sweet friend…I have a grandson with the same syndrome. We hear in California that it 1 out of every 30 kids have a form of autism. It have such a wide spectrum as you know. My heart and prayers are with you right now. I am sending you a huge HUG!!! to you and your family.
#155 Ann August 28, 2009, 8:22 am

My 8 year old daughter is high functioning autism and it is indeed a bumpy road. Some days more so than others. We’ve done OT and that helped. We have an IEP at our wonderful public school and that has been extremely wonderful in her adapting to that experience. She’s even in the gifted/talented program. However, the outbursts, the angry words, etc. have eroded my sympathy and that is the very difficult part of parenting a special child. I applaud you for seeking additional help. I learned from some time talking to a therapist that the things that I feel are necessary and normal for a healthy parent/child relationship are just no so for her. She’s wired differently and that is our reality. I would say it all works out and to some degree it does. But it has taught me that today is now and let’s work on making today as good as possible. Tomorrow is the unknown and not to be worried over just yet.
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#157 Rob October 25, 2009, 1:07 pm

Nothing is more valuable to a teacher than appreciation for the work he/she does. My wife is a special ED, teacher. Thanks, Cindy, for sharing your joys and pains.

regards,

Rob
Teacher Appreciation Ideas
#158 Lauran November 16, 2009, 11:36 pm

My heart goes out to your family. My daughter is 12 with Aspergers and we have good days and bad we have started back to therapy last week I really hope this Dr. can help her.
She is having melt downs at school and some of the teachers are wonderful with her and I appreciate them so much. Unfortunately there are a few that just don’t understand the simplest things can throw her whole day off and just don’t want to deal with her problem.
#159 Sandy King December 26, 2009, 4:33 pm

MY THOUGHTS AND PRAYERS ARE WITH YOU AND YOUR FAMILY!

SANDY
#160 Amie Hernandez March 28, 2010, 8:22 am

My nephew was diagnosed with Aspergers syndrome. He passed away in 2002. He was only here on hearth for 4 short years but left a huge impact on my life. Every year me and my children do the walk for autism, with Autism speaks.
Praying for you and your family (I know I am alittle late on the comment, but Im just catching up with my favorite blogs, your being one of them)
#161 Thanita July 13, 2010, 9:12 pm

I follow you on Twitter. I love the crafts you feature on this site. I had no idea you have a child on the spectrum. My son is 14 and has Asperger’s. I’m happy to say that he is about to play high school football. That said, I understand your worry. I still see things in my son that will need complete understanding. The type of understanding that most people will not have the patience for. Still, I try to explain to people around him and help give him the words to explain his disability. Easier said than done right?!

I found this: http://www.aspergerinfo.com/ascard.htm

I made a copy and took it to Office Depot for them to laminate it. Them cut out a bunch of them. My son carries it with him just in case he gets into a sticky situation. It’s so good for a teenager w/Aspergers to carry. Hugs to you and your son! BTW my Twitter name is VickysIckies.

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