Living With Autism & Aspergers Syndrome

Our son's diagnosis with Autism, specifically Asperger's Syndrome, was a big piece to a very unexpected puzzle our lives had become. I've not written about it since last December because honestly, I'm fiercely protective of our son's privacy. How can I balance protecting his privacy with sharing information I think can be helpful to others? This is my attempt. Asperger's Syndrome is an autism spectrum disorder considered by many to be the mildest and highest functioning. Because of this, many children go undetected for quite some time or undiagnosed. Once social interaction and life demands increase, symptoms begin to show much more and specific characteristics can vary. For example, some children have difficulty making eye contact when speaking, lack social and conversational skills, and fixate on specific subjects. (Of those three examples, only the last applies to our son). Studies suggest boys are four times more likely than girls to have Asperger's Syndrome. When our boy was about seven, I wondered if he may have Asperger's Syndrome. My curiosity was brought on by his disdain for being touched or hugged, which I found to be unusual considering we didn't experience this with our three other boys. After searching around about "the signs" there were things that didn't match, like the fact that he was very social and had lots of friends, so I dismissed my hunch entirely. Had I spent more time really investigating autism, his life and our lives would have been much easier. I can't stress enough how important having a diagnosis and understanding what's affecting your child is. Yes, it's very helpful for the family, but even more so for the child. For our son, his struggles really became an internal affliction - feeling different, seeing the world in a different way, and processing life differently than others. He slowly became deeply depressed, yet he nor any of us understood why. We visited doctor after doctor who couldn't see beyond the fact that he was depressed. We needed to get beyond that. Yes, he was depressed, but why?! One year after his diagnosis we now understand that many children with Asperger's suffer from depression, brought on by their differences from the mainstream world. For our boy, getting the diagnosis changed everything for him. He was able to understand that yes, he sees the world differently, but he's not crazy, and that's what he'd been thinking all along. I'm different, so I'm crazy. I'm crazy = there's no hope for me. A few of the outward signs in our son: As a child, he was very sensitive to loud noise. Doesn't like to be touched. Fixation on a specific subject: When he first began to walk he began fixating on basketball. He'd climb out of his crib at night and shoot baskets into his little Fisher Price hoop. Over and over and over and over.... saying "Shoot a hoop". "Shoot a hoop". "Shoot a hoop". Put him in his crib, he'd climb back out. Repeat Repeat Repeat. Night after night. When he began to read, the fixation turned to baseball. He'd read the baseball encyclopedia of stats and memorize each player's stats, from the beginning of baseball to current day. He'd listen to old recordings of the World Series, talk incessantly about anything baseball, and collected baseball memorabilia. On the playground, he'd create baseball teams and became manager of players, complete with contracts that he'd write at home and have his friends sign. Highly intelligent and very well read. It's normal for him to check out 20 biographies at a time at the library and read each one. (Of course, each book pertaining to his favorite subject). I want to tell you that life after the diagnosis has been easy but it hasn't. The reality is that learning to live with and manage this is hard work and we take it seriously. Sometimes for half a second, Colin and I wish that we could just take the easy path and not sweat grades, rules, and parenting quite so much. It'd be easier in the short term, that's for sure. But that's not what we signed up for when we made the choice to have these boys of ours. We're obligated to the boys and this world to create fine men, show them the way, and be loving in the process. And I'm not telling you this so that you'll praise us for our parenting. I'm telling you this because it leads me to the last part of what I want to say today about families living with autism. Although this isn't our experience, there are many families with children whose Aspergian meltdowns occur in public. At the store, school, the pool, parties, and family gatherings. I'm not saying any or all occurances you see of what the world would describe as "poorly behaved children" are related to autism. I just ask that when you see this happening, that you show kindness, refrain from judgement and hold these families in your heart. They're doing the best they can, whatever their story may be.

Comments

[Yolanda]

Thanks for sharing:)

[Nanci Hargis]

Beautifully written Serena. Thoughts of Love for your family. And yes, the world needs to show
more compassion for others who have daily struggles, what ever they may be.
Your friend from Missouri

[linda/lulu]

As we have talked about I to have a sone with Aspergers. He is 33 years old. When he was 5 we had him diagnosed because he had not started talking. A neurologist, Dr Velcek, that we took him to when he was about 6 told him "your not retarded", I was so shocked, but to this day Andrew say's that is one of the best things that any Dr ever said to him. It was what all the kids at school called him and he just started to believe it.

Raising a child that is different is heart breaking, discouraging, and takes all of your humor and patience to get thru. He had physical therapy, and group therapy and we feel so lucky that he has been able to find a place in the world. But just last night he said, "I don't understand about conversations, they seem so random and I have trouble knowing what is expected of me". It still breaks my heart. Thanks Serena, as usual you are right on.

[Christi Kotus]

Thank You for sharing your journey, and for sharing the private struggle we face as a family. I have not one but two boys with autism. While our day to day life can be a struggle (especially those meltdowns in public), my boys have shaped the furious warrior that I am. And have given me the most precious memories that I carry close to my heart. The first "Wub U" at age 5 1/2, the first "natural" hug, and the mile stones we seem to be gaining at increasing speed. While you might be discouraged, just keep up the good work, your family will get there. And keep hugging your son, play with different pressured holds and ask him which feels better. My oldest loves squeezes and my youngest hates light kisses (goodnight type).

[teresa]

Dear Serena-
Few life challenges strike parents more deeply then the struggles faced by their children. ...we have a son who had a stroke at birth....and although from an outsider he would seem fine...but he struggles with an "invisible" to the public.... challenge...mainly with communication and decision making and muscle weakness. In some ways I understand you struggles...and send you a big hug.
Your message was timely.
Acceptance, understanding and love.... kindness matters.
Thank you
Teresa

[Pam Geister]

Very well written and while I can't say I know how it is to raise a child with Asperger syndrome, I can feel your love for your child and the frustration.
I work for a dentist who has 2 autistic children and we see a large majority of all types of syndromes. We see a few Asperger syndrome children and while difficult at times, we have made leaps and bounds having them come to the dentist office. One of my "favorites" is a girl who must be about your sons age and she has made such progress in going to the dentist....she fills my heart with love and smiles.
I think living with autism, any spectrum, would be challenging but I think you must be doing a wonderful job!
I guess the point of this post is to say Kudos to you and your family!

[Christine B]

We have a 7 yr old boy the youngest who has been a blessing...challenging...but definitely a blessing. Our boys sound beyond belief similiar...down to the loud noises, H fixates on all things Egypt, and Military. And he is the child that has meltdowns...usually from being overtired, so coping just gets harder for him. And he also is very social, and has a lot to tell ya. Beyond smart...to the point when we watched Temple Grandin...my husband and I both looked at each other, and went huh? He can vision things the way she does, simply fascinating! Then build it. Our struggle has been looking into having him checked out. But have been hestitant b/c he really wants to attend the Naval Academy like Dad...and become a Navy Seal. We live here in Spokane....and am curious to know who finally went to. We were at the Casper Fry dinner...hanging out w/ Junk Girls. And had just a glorious time!!! Thanks for all you do!

[Lori @Vintage Charm Restored]

Oh how I totally relate to this post... We just found out that our daughter has Asperger's- high functioning.. not all the symptoms there keeping doctors hopping on diagnosis... depression hit hard this last summer as she became more self-aware of how different she was and how different she saw and processed the world around her. And I wrote about it here.. http://www.vintagecharmrestored.com/2013/08/blessings-through-the-storms.html
I agree the balance of sharing and protecting the world around them is hard and difficult to say the least. Thank you for sharing!! ~ Lori

[Monica]

God does tend to throw us curve balls as we raise our little blessings. It sounds like you and Colin are handling it extremely well. Your son is very blessed to have such understanding and devoted parents.

[Amy Logsdon Warner]

My son was diagnosed officially several years ago and had other medical complications beyond the Aspergers. I see Aspergers as a processing disorder which, yes affects him daily, but mostly he is the funniest, most clever, kid I know and I hold him to high expectations as does his school.

It's tiring, being a parent to such a wonderful gift. It takes a lot of energy: mental, emotional and physical, but he is a gift and I treasure him.

Thank you for sharing your story, take strength in knowing that we are out here sharing your journey.

[Erin@whathefork]

Thank you for sharing! My just turned 8 year old son also has ASD. We started noticing differences when he was 4 and we have been learning to help him be the best kid he can be ever since. It isn't easy some days but his differences make life exciting.

[Pam C]

Serena,

I have a 14 year old boy who has Aspergers, ADHD, OCD, anxiety disorder, executive function disorder and sensory issues. Unlike your son, mine needs physical contact. He always wants to hug people, which is sweet, but can also cause problems. We have done all the testing, sleep studies, eye exams, Occupational therapy etc. He is maturing and changing into a young adult. He is extraordinary at Football, baseball, drawing, Science and he memorizes statics just like your son. He is a huge college football fan and knows so much about all the players and teams in the PAC 12. We have suggested maybe he be a sports broadcaster or get a job as a sports ware designer. You are right that my husband and I wanted this wonderful child, but boy is it hard! I just keep telling myself, that GOD only gives you what you can handle. Thanks for sharing your story.

[Jeannine]

S: I told you. Perfect purpose. Keep going. J

[Pat]

As a public high school nurse I found students with Aspergers to be some of my most favorite students to work with. Infinite patience and constant acceptance of the individual seemed to work best in my encounters. I recall students who were the most affectionate and loving students I saw. It seemed to help if they knew the health office was always a safe and accepting environment. My best to you and your family, and God bless you.

[Serena]

Thanks for sharing your son's story, Pam. It seems like the older they get, the harder it is in a lot of ways, yet easier as well. I echo your sentiments about giving us what we can handle. Sometimes I think it's more, but then it gets better long enough to catch our breath. Sending you love and hope. xxxxxooooooo

[Serena]

Thinking about you tonight, Erin and send you strength and love to be the best mom you can be.

[Serena]

Amy, thank you. I do take strength in knowing you and so many others are out there and hope that you do as well. Our boys is so funny and clever too and that is a real blessing. Big ((( HUG ))) from me to you.

[Serena]

Yes you did and I won't ever forget it. You are kind and a gift to the world.

[Serena]

Thank you, Monica. I appreciate that very much. It's so nice to hear from you again, I've been away for so long.... Love, Serena

[Serena]

Oh gosh, Lori. I can so relate. I left you a comment on your blog and hope you got it. Much love...

[Serena]

Christine, does the possibility of having a diagnosis of autism preclude him from being in the military? If so, I find that unconscionable. I hope that's not the case....
Please feel free to email me any time with your questions: serena (at) thefarmchicks.com
xxxooo

[Serena]

Thank you for the love, Pam. Your message is an incredibly kind gesture. Love, Serena

[Serena]

Oh Teresa, I'm so sorry to hear that. These invisible struggles are so hard for anyone to understand. I am holding you in my heart and send you love.

[Serena]

Christi, I can't even imagine how you do it. I understand being a warrior, it's all we can do. Thank you for reaching out.

[Serena]

Linda, I think of you often and remember you telling me that everything works out. I know it will, but sometimes, it's just nice to remember the kind and encouraging things I've been told. Thank you so much for that. Hope all is well on the home front these days...

[Serena]

Hi Nanci, Thank you. It's so nice to hear from you. Much love and happy autumn, Serena

[Serena]

xxoo

[Sarah]

I really enjoyed reading your post about your son. I know life with Asperger's can be a challenge (probably putting it mildly!).
I read a book recently, that I've been telling everyone I know who may be affected by a diagnosis somewhere on the autism spectrum.
It's called "The Spark: A Mother's Story of Nurturing Genius," by Kristine Barnett.
Your library might have a copy. It really helped me understand autism more, and gave me ideas on how I can better help my own children.

http://www.amazon.com/The-Spark-Mothers-Nurturing-Genius/dp/0812993373

[Brenda (Past Blessings)]

Serena, thank you so much for your honesty and candor . . . it may help others more than you will ever know.

My oldest is ADHD and has a processing disorder. As a young man now, he has learned how to handle himself quite well, but it was hard in the early years . . . especially before any diagnosis. No matter how hard we tried to be firm in our parenting, his strong willed responses would often leave other seeing him as a unruly brat and being judged as poor parents was very painful. He did not have the typical understanding of boundaries or acceptable behaviors and this of course caused many problems. In the third grade a teacher actually lost his temper with our son and kicked his desk. This is the same year we were able to finally get some diagnosis' and treatment . . . this drastically changed things for the better, but it was still a struggle for many years. His lack of being able to calm himself made other children shun him. Today, he is a thriving young man, but he still struggles with low self esteem and keeping close friends. But his future is bright. The strong willed side can also be a blessing . . . he is a hard worker and he sees things through to the end. Having a child who is not what the world calls "normal" can be hard, but once we accept that God has a different path planned for that child, it can still be a blessing. You have a very smart, articulate son who has a bright future ahead of him . . . as parents we merely need to realize we are not in charge of writing their story . . . realize that their story may turn out differently than we expected . . . but also realize it can be a great story nevertheless.

Hugs Blessings . . .

Brenda