A
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.
A
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.
A
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.
A
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.
A
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.
A
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.
A
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.
A
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!
A
A
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!
A
The photos were taken by my husband on a bike ride through the mountains with a friend and our boys last week.
T
Sending positive thoughts to you and your family. I’m so glad you wrote this post. Big hugs.
Our thoughts and prayers are with you, and thank you for using a very trying time in your life to help others. You truly are a woman of great strength and integrity to approach even your own trials as an opportunity to ease the burden of someone else’s heart. Remarkable.
I love your blog and have been following it for about a year. Please know that someone in California is praying for you and your beautiful family!
My son has AS as well. It’s a rough road to go down, but I am so happy that there are others out there dealing with the same problem!
Good luck I know its a day to day thing!
You have an amazing blog…but obviously you’re more amazing as a mother and that’s what counts. Sending you lots of love and prayers to you, your son and your family. ♥
I am definately sending good thoughts your way. I can’t imagine what you are going through, but with all the support you are getting you will get through this. I enjoy reading your blog, the good and the bad. It is nice to share your experience with others so they know they aren’t alone for sure. Take care and hope things go well for you, your son and your entire family!
God bless you and your family. Thank you for sharing such fabulous advice. It takes an amazing amount of strength and courage to deal with these kinds of crises day-in and day-out. May you continue to find strength in your blog and in your friends and family.
Love and prayers to you and yours.
I live in Parker and I would love to bring you and your family a meal or something! I love your site and hope you can find some answers for helping your son!
I have a 5 year old son who also has asperbergers syndrome. We are trying to educate ourselves and have our son in therapy. He has grown leaps & bounds in the last year. Thankyou for your tips and advice. I will remember them. I have been following your blog only a few months but really enjoy it. May our Father in Heaven bless and keep you and your family!
You are an inspiration to all who read your blog. As I was reading the comments of other women I couldnt think of anything more to say other than to echo each of their comments and to let you know that one more family, mine, will be praying for you and your family. May the Lord Bless each of you. x
Sending lots of hugs and prayers to you and your family. Thanks for sharing and just know that you are never alone!
I have been in your shoes many times – my granddaughter was born with a disease – 1st we were shunned even by my own sister – I have not seen her since October 1990 & we were very close. But the bottom line is that you are doing every thing that you possibly do – that is the important thing. My husband passed away 15 months after Miranda did at 12 years old – so the best that I can tell you is that when every thing is done – which, by no means that your situation is this bad – but in your heart if you have done everything possible – it will be ok. My other daughter had a set of twins that are now 8 – and they are pretty sure that one of them has what your son has. We will take it 1 day at a time.
Blessings
Bev
P.S. – I truly hope that I have given you some inspiration – I know I can be a little confusing some times – but that is what passion does to you – you have your main focus.
hang in there. It seems like you have the core basics figured out. Friends, knowledge and acknowledging the blessings. I know when I found out about my two children having it – it was hard. I also know sometimes when they would act out it was difficult for others because they look “normal”. I think it takes courage and lots of strength for parents to deal with the extras God gives us. We are the best advocates for our children. Sending lots of love and prayers your way. *Remember the little things*
I have been reading your blog for some time and have loved it. I am so glad that you chose to share your challenges in dealing with Autism/Asperger’s. I am sure you have no idea how far-reaching the effects are in sharing this as so many people are sharing the same struggles.
PS Nice pictures!
Today was my first visit to your website. Very touching. I am new to the blog world and I am so grateful for this avenue of expression, that we as mothers are able to utilize and bond with someone clear across the country…
The presence of you being with your son is so powerful. Not only as a mother, but as an other “being” experiencing his reality with him.
Sending positive and joyful thoughts to you and your family.
♥ Alice
As a mom of a two year old still trying to determine a proper diagnosis I can completely feel for you. I am at the very beginning of this path and as someone further down the road, you give me great inspiration. I pray for you and your family. If nothing else I have learned that it’s family that you need to hold on tight and cling to in times of need. Good luck.
My thoughts are with you! I love your blog because you are honest. Too many out there acting like the world is peachy keen when we all know it isn’t. I’m praying for your family tonight!
Cindy,
I’m so sorry you are going through this. My son, age 14, is also Aspergers. It took a long time to get the diagnosis, though, because he is internationally adopted and they wanted to rule out those delays. We are in a specialized school now that is wonderful for him. Our biggest issues are dealing with others who see him as “different”. Amazingly, it’s adults that can be cruel like children!!
I will keep you and your family in my prayers as you go through this. I am praying, too, that your son receives the help and treatment he needs. I was once told by a family member that God has made us all perfect and has a place for each of us in this world. Sometimes when I feel helpless with my son, I rely a lot on that. I hope it helps you too!
Hugs,
Caroline
Years ago I was able to see you handling this difficult situation first-hand (we lived in Germany together) and there is no one that has amazed me more by their ability to handle stress and crisis with humor and perspective. Even now, 7 years later, I think of you when the going gets tough and I try to find the humor in it all- it’s there, you just have to dig sometimes! Thanks for the life experience! I will be praying for you.
Keeping you in my thoughts…my oldest has also been diagnosed and sometimes I get that drowning feeling…and am also thankful for my friends and his friends that have accepted him unconditionally and have come to understand who he really is!
Sounds like it’s been a rough time. Glad you’re learning from it, and thanks for sharing what you’ve learned. Prayers said for your son and your family…
And those are lovely photos.
Although my journey has just begun as my son in only 4, I do know what it can do to a family. I will keep you and your family in my thoughts and prayers and wish you all the best!
Thank you so much for sharing this story. Looking at the number of comments to this post, it is obvious that you have a large amount of followers who also care a great deal about you and your family. We are all there with you.
Thank you for this honest, sincere post. It touched my heart and your family will be in my prayers. Sometimes we sidestep the long term, only focusing on the short term but you are all working together and your son is blessed to have a family like yours!
Best wishes! ♥ Jen
Keeping you and your family in my thoughts and prayers. I love it when bloggers can be free and honest with their audience.
You are awarded the “One Lovely Blog Award” today. You can check my blog for details.
Hugs,
thank you for your honesty, as well as those helpful points to survival…
we have a 3 year old, who is struggling with “something” they say it is not autism, but as he ages… it begins to look similar to….
His brain connectors just stop. he draws blank, and just becomes nothing. This happens for 10 days at a time, and then we will have a month of progress.
But, this last regression, I too, saw the needs to “sharpen my tools”, to never give up, to be thankful, and to cheer my little boy on.
as a mother, you and I, are our sons biggest fan- and with you being in Colorado, you are his biggest cheerleader, his beacon of hope, and his shoulder to find rest, peace, love and direction..
take care, and thank you for sharing, your heart is heard.
Your blog has often been the bright spot in my overwhelmingly stressful life as an older single mother with many personal challenges…I want to say I admire your courage to pause and share what you are experiencing. My gosh, blog-land has often looked like “perfect land” to me…and sometimes I can’t help but look at my own life and ask, “What’s wrong with me?” But you know what? We are all human. Our blogs are just that…our happy places. We all have trials and tribulations, happy times and sad times…We are all, indeed, human. Thank you for sharing your human-ness with us. It is soooo needed. That’s how we learn…through each other. My thoughts and prayers are with you and your family.
Many Blessings your way,
Cynthia
my thoughts and prayers are with you. Thanks for sharing your thoughts with us.
My son is 8 and we are in the beginning stages of testing Reese for Aspergers .It is so hard to watch people shun my sweet little boy.They just don’t understand his situation.I know that we have a long road ahead of us.One thing is Reese has just started having siezures,i understand that is not very comon with children with Aspergers,is that anything you have experienced.My prayers are with you and your family.
I am from Brazil and I love your blog, your ideas and your way to express yourself. I felt like someone knew exactly my feelings. Until last year, I have suspected my 6 year son had AS. It turned out he is extremely shy only, it a challenge but not compared to yours. The most important thing for me, was the support I have received from people around me when I most needed it.
Please, be sure my best thoughts are with you, even being so far in location. I wish you and your family the best.
PS> It’s been a long time since I last wrote in English, so I am a little bit rusty with it. Sorry if there are mistakes on the post above…
Sending thoughts and prayers your way. I am a school nurse in a k through 8 school and there are several kids with Asperger’s Syndrom. Most of them in middle school. Most of them are doing great and really if you didn’t read their history you wouldn’t even know. I pray for your son and your family as you deal with this. I know puberty can play a huge role and maybe things will be easier for your son after that. Thank you for sharing and blessings to you and your family.
Hi Cindy,
A few years back, it didn’t go well with my youngest son. His behaviour at school was awfull, and at home I found his brother in a closet because he was so afraid of him. We always thougt we could manage our children alone. We couldn’t, and by the time we found out it was too late. Our son had to live in a institution for almost half a year, and a lot of therapy followed ( for him and for us as a family). He’s back home now, no more therapy or special school. We have to do it ourselves again. But with everything we learned, I’m sure we can.
I wish you and your family all the best and I really hope that this period will make you stronger and happier.
Your blog has been inspiring me for a long time, thank you for that!
Dorien
Thanks for sharing your delicate thoughts about your family. I’ll keep you in my thoughts and prayers.
I hope God holds you gently in his arms through this time.
I live in Denver and have spent considerable time at Children’s for my job (I’m a pediatric OT). I just popped on to your blog today and read about your struggles. If you are still in town, I’d love to cook a meal for your family. Our prayers are with you…
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!
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
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.
Thanks for having the courage to share. You and your family are in my prayers.
There is power in honesty. Thanks for sharing. My good thoughts are with your family.
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.
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
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!
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.
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.
Those lessons are every day life lessons. Thank you for reminding, educating and sharing something so very personal to you and your family.
{{{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.
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.
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.
[...] while I have been getting back into the swing of things! Thank you most of all for all of your encouraging comments! You will never know how much support and comfort your sweet words brought me. We are all now home [...]