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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.
T
My 9 year old son was recently diagnosed with Aspergers. Originally he was diagnosed with ADHD. It is very difficult many days to see the struggles he goes through. It is hard on the entire family so I am so glad you were able to have the family counseling as part of his treatment. I fear at some point we may be in the same situation as my son is getting more violent the onlder he gets. I hope you are able to find the answers and comfort needed. Good luck!
wow!!! although my b is adhd, i can totally see those same things here…sharpen your tools and keep loved ones close by! i am so glad you all are moving through this life together…and i know you will learn bc of your openness!!! prayers.
My sister Rebecca already left a comment, but I wanted to add a thank you. Thanks so much for sharing this with us. I think that by sharing our stories, we are educating others. I think it opens us up to helping other people in similar shoes know how others deal with it. I sometimes feel so alone in my world. I love to read about other families living through tough situations. Together we become stronger.
Thanks so much for sharing!!
Anjeanette of the Roots and Wings Co girls;)
So sorry to hear that you have been struggling. Sending warm vibes you way and wishing you much love and peace.
Oh, honey. Take care, and let me know if I can do anything to help.
(((((hugs)))))
Our thoughts are with you. Your son is very lucky to have such a caring and supportive family.
You are a good mother.
You are never alone in this journey. I work at a facility in Mississipppi for people with developmental and physical disabilities. In addition, there are several staff here who have children with Autism. It is indeed a journey. Our best resources are parents. If you would like, there is a parent here you would love to get to know. She works with other parents also. That is her soul mission. She is Susan McPhail. Her daughter is Ashley. We have all grown up with Ashley. her mom is very candid and down to earth. She is a strong advocate, but realistic. I think you would enjoy taking with her. her email address is: smcphail@nmrc.state.ms.us. Ashley has a twin brother who just graduated at Ole Ms. They are terrific resources and just good folk!!! You makeing the right steps in your journey. Be real, is what we tell families.
Cindy!!!
Thanks so much for this post. My oldest is on the spectrum (more moderate-severe)- I love your honesty and advice. On National Autism Day I wrote an autism post if you want to check it out:
http://adventureswiththeprovosts.blogspot.com/2009/04/national-day.html
And I totally agree- it can be very lonely at times. I’m here for you!! From one autism mom to another. Hang in there.
For some time I worked with kids with diaabilities. It is a hard thing to go through for some more so than others.My greatgrandson has aspergers and is progressing nicely but will always have some quirks that we understand but the outsiders do not. He is sweet and a very even disposition. He just has to fight fears most of the time.Things the avergage person would not give a second thought.I pray that you all can get the help that will guide you to a workable and livable solution. God Bless. Pat
I am also a mother of a child on the autism spectrum. Thank you for sharing with us. Somedays I am isolated to the home with my son. I have found daily reading of quilt and craft blogs gives me a sense of normalcy. Once your life settles down a bit, please continue to blog. From reading the post before me, sounds like there are other families touched by autism who enjoy your blog.
Hey Cindy,
I do not know if you remember Willem from back in the day at ISD, he too has been diagnosed with Aspergers and since it is very recent I am still in the denial stage. He is now 14 and I have no idea where to go from here.
I will keep you in my thoughts and prayers and if you learn anything significant, I would greatly appreciate you passing the info along.
I love your site and todays post really hit home.
Thanks and I hope all is well!
Liz Roud
I’m so sorry to hear that you’re family has been going through rough times. My thoughts and prayers are with you! *hugs*
Thank you so much for sharing. I have a 6 year old daughter who is autistic. Ignorance is indeed not bliss and the more knowledge you are equipped with, the easier it gets. I hope your son gets all the help he needs and deserves. Best wishes and good luck.
My almost 15yr old son has Asperger’s with ADHD. I’m really glad you posted this. We had an absolute HORRIFYING day Sunday. Around 4pm, he announced that he didn’t take his Adderall that morning. Well now he knows WHY he takes it. My body was actually sore from being tense all day long.
Thank you for reminding me that I am not alone. AND that its OK to admit when we need help.
Thank you for your honesty in sharing your family’s situation and experiences through this post. Life is meant to be shared – the good times and the times with which we struggle most. Praying for you and yours, for strength, stamina and a sense of peace that can only come from Him.
(((hugs))) Cindy. Take care out there… I’ll be thinking of you. xo
what can I say, but…you are inspiring…thankyou
Thank you for being real. I often find myself wanting to blog more but I don’t. I get concerned that what I have to say isn’t pleasant or witty. (So many blogs are both!) For me real life is very real and that means I get the ups with the downs. I know we all have real lives like that but many only share the beautiful and lovely side of things. I’m often left wondering (after reading those blogs) if I’m the only one with struggles.
I was in Denver’s Children Hospital 17 years ago with my son. I remember my stay there well. I lived in Denver, Thornton and Fort Collins for years before moving to Illinois. Sorry I can’t be closer to lend you a shoulder. I will say a prayer for your family.
I too wish I had answers. I don’t. In cases of my lack of understanding, I hold firmly to my faith. I hope you have that to give you strength. Sending you loving and friendly thoughts from afar. : )
My prayers are with you! You are definitely not alone my son has autism (Asperger’s). It can be a day to day struggle. It’s a learning process for us as parents as well as our children. The entire family is affected by Autism not just the child or adult that has been diagnosed. I hope and pray that things are going well that and that you see positve outcome from all of this. Thanks so much for letting us know so that we can be there for you!
I have Asperger’s myself, and it makes me feel good to read about a parent being so supportive. ((hugs))
Thanks for sharing your personal life with us. I know how hard that must be. You are in my thoughts as you struggle. Just know that we are praying for you and hopefully things will get easier.
I can understand your struggle and appreciate your honesty. May God give your family strength and peace.
THANK YOU…THANK YOU…THANK YOU for putting it all in perspective, at a time when i desperately need it:-)
My 8 yr old was diagnosed Bipolar 2 years ago and it’s a difficult and rocky road……..sometimes seeming insurmountable.
My prayers are with you on this journey and know that your posting gave someone hope today:-)
Thanks for sharing your situation with all of us. You are not alone. Though the struggles may be different, many of us deal with issues with our children that are tough and sometimes heartbreaking. My struggle is with my 6 yr old’s life threatening food allergies. I wrote a week of blog posts about food allergy, with one coming to the heart of the struggle.
http://4keith.blogspot.com/2009/05/food-allergy-awareness-week-friday.html
You will be in my thoughts. Your child is lucky to have a wonderful mom and a great family backing him up.
Thank you so much for sharing your life with us. I will pray for strength for you.
I visit your blog often, not often commenting however. I appreciate your honesty and know that there is some great comfort in “blog land”. It is wierd. I have gone through some serious trials and bloggy friends (new and old) come out of the woodworks to offer support. I hope that you find that sort of love too. Your family will be in my thoughts and prayers. I live in Denver and have some friends who are doctors at the Children’s Hospital – I know you are in great hands!
Thank you for sharing. It’s not easy opening up our struggles to others. I am glad you have the help of friends to see you through the tough times. Chin up.
Prayers for you and your family. Take as long a break as you need…I’m sure we will all be here when you get back. I know I will be!
Cindy, I have wanted to post all day but I was at work and wanted to take the time to write. I work with children on the Autism Spectrum as a speech therapist and would like to be in the classroom someday soon (working on it as my Masters). It is challenging and difficult but I know the reason I do it everyday is for that one single moment (which often times can be almost a year in the making) when a child “gets” it. That “ah-ha” moment where they make the connection. All the hard work, months of trying, tantrums, difficult days all erase away. That is why I do it. Let me share a story with you, about a month ago I was out in the community with one of my classes and we were at a restaurant where I saw a former student of mine working as part of his job training/life skills class. I went over and said hello, he remembered me and I felt awesome that he progressed to being able to have a job.
As I sat there in the restaurant I texted all my friends who worked with him and told them the good news, they all said to say hello and were so happy for him. That was an ah-ha moment.
I am thinking about you and your family and know that you can count me on your side if you ever need to chat, talk or just vent (about anything). He is very lucky to have a mom like you and a family that is caring and on his side.
Bless you, Zizette
Cindy, I am so sorry your family is struggling right now. I am in therapy to deal with problems stemming from my son’s serious heart defect and your suggestions will definitely be helpful. More importantly, I hope the warm thoughts and prayers that many in the blogosphere are sending your way can be felt.
Thank you for sharing and don’t be hesitant to do so again if you need to on your blog. Journal writing can help you with coping during the trying times.
Sorry to hear your family is going through such a rough time…my thoughts will be with you.
I hope all the best for you and your family. I have had loads of fun sewing due to your blog. I hope you find that same joy and happiness sometime very soon.
Sorry to hear your family is going through such a rough time…my thoughts will be with you. I know it is hard to open up about personal matters, so thanks for sharing!
So sorry to hear of your family’s struggles. I am so impressed that you put your family’s hard times out here for people to know about and to help others. I applaud you. I will be sending prayers your way.
((hugs))
Jen
thank you so much for sharing your story! i am a preschool teacher and in the last four years have had several children in my classroom who fell on the autistic spectrum. some entered my classroom with a diagnosis, a few received a diagnosis during the year, and some did not want to face the issues their child was having. as you know, early intervention is crucial for children who fall on the spectrum. i believe the more people are aware of autism and the children and families who face its challenges, the more people will not fear the unknown. i just want to help these families understand their children and their needs more. i think stories like yours can help do that!
Thanks for sharing-you’re a great mother. You’ll be in my thoughts.
Just wanted to say I’m thinking of you and wishing you the strength and grace to manage these challenges. I’ve heard wonderful things about the program you are visiting!
i read this post this morning and have been thinking about it all day! we too have a son with asperger’s and i have never wrote anything about my son. it’s funny because i used some of the teacher appreciation ideas for his amazing teacher he has had this year! i will always remember what you wrote about sharpening your tools and we will continue to educate ourselves. thanks for your great blog post!
Thanks for sharing…I’m glad you did because, as you said, it helps to do so. I don’t have children with autism but we know quite a few families with children Aspergers or other forms of autism and they all testify to the need for help from professionals and good family and friends. Hope all goes well with your son’s treatment.
I truely respect your honosty. No family is perfect, that is what makes all of us so unique. For years we always wondered what was going on with my nephew. We always thought that he was “different”, but we loved him and embraced his uniqueness. He was finally dx with asp. last year and is therapy. My sister had to take him out of school and home school because kids are so cruel. He had problems with being bullied. For him, home is his safe haven. Know that you are not alone. God Bless.
Thanks so much for sharing this with us. My prayers are with you and your family. God bless!
My thoughts and prayers are with you and your family. Who knew being a parent would be such a rewarding, joy filled, terror filled, heart breaking ordeal?!
May God give you strength for today and hope for tomorrow!
My 16 yr. old son has Aspergers & it seems as though we were all managing up until this year as well. The bottom just seemed to fall out from underneath my son’s world all at once….though looking back, I suppose I can honestly say that it has been a long time coming.
I have put into place extra supports for my son as well. Like you, my son has attended a day program & additional therapy for several months. I do feel like he is making progress, but I remain cautiously optimistic. I don’t want to be blindsided and caught off guard if those subtle signs start rearing their gnarly head again.
I am proud of the progress & hard work my son has put forth. He is a wonderful soul & he has worked tirelessly to forge ahead with a warrior attitude (though his 16 yr old attitude shines through too:-)…..) Hang in there – I am glad I found your blog….I’ll be checking in from time to time!
BTW: I am also diagnosed with Aspergers….blessings to you & your family.
I’m glad you were able to reach out for a helping hand when you needed one and also glad that you’ve opened up to share your experience! Sending you many positive thoughts and I hope you and your son will be able to go home and resume a peaceful routine soon.
Thank you for the authenticity! Praying for strength. I hope the treatments go well. Take care.
You and your family will be in my prayers. Thank you for sharing this bit of your life with us.
We will pray for your son. I know you must be having a difficult time balancing everything right now. Take care.
~Kim
Parenting is the toughest job in the world. There are days where I wish there was a manual I could refer to when I am at a loss.
My thoughts and prayers are with you and your family. I understand the struggles a family goes through with a child with special needs. I have a son with behavorial and social problems. Everyday is a new day, one in which we never know how the day is going to go. Sometimes we make it through with little disturbances and others, it’s a battle all day long. It can be draining, lonely and frustrating.
By all the comments, you have an amazing support group here in “blogland”. I’m glad to hear you also have an amazing group of friends that supports you.
Good luck and I hope the hospital can bring you the help you need. Take care!
Peace and healing. I’m glad you posted. Most people have now been touched in some way by autism.
My heartfelt prayers go out to you and the many beautiful people loving and weather (all that goes with) their special needs kids.