a lot of you that read this blog probably also read ali’s blog. so you probably already know all about her six degrees charity fundraiser she is working on right now. but just in case you dont, you can go here or here to read more about what she is doing.
and you can click on this:
what you might not know is how autism has touched our life. when our daughter mckenna was born, we knew within six months that there was something not okay going on with her. she hadnt gained much weight. she didnt cry. she didnt respond to us. we started doing tests to find out what was wrong.
we went through two years of tests. nothing came of it. at the end, her pediatrician told me that she wouldnt torture mckenna with any more tests. no more needles, bloodwork, x-rays, MRI’s, cat scans…she told me that mckenna likely had an undiagnosed syndrome and that as long as she kept growing at her own pace and stayed healthy we would “wait and see”.
three years later, Newsweek came out with a magazine spread on autism. this was in 2000. my father in law sent it to me because a lot of what he had read reminded him of mckenna. after reading it myself, i had to agree and we got her tested. when she was five years old, she was diagnosed as “on the autistic spectrum”.
what does that mean? well you go through a lot of research. you read a lot online. you try diets and vitamins. and then, for us what it meant was to carry on just like we always did. it didnt change our lives at all to have this diagnosis, other than to have a name to explain our daughter’s behaviors. and even when you give the name, people bring up images of kids in helmets banging their head against the wall and Rainman, neither anything like mckenna.
one year ago (or two) during her tri-annual IEP she was tested extensively by many experts in the field. our new diagnosis for mckenna is LIF. (limited intellectual functioning) which is really just a pretty phrase for mentally retarded. neither phrase bothers me much. it doesnt mean anything to me other than a name. she still has autistic tendencies, but the autism diagnosis is off of her records.
for six years, we all thought mckenna was autistic.
my belief is that she still does have an undiagnosed syndrome of some kind. something that would explain not only her limited functioning but also several physical traits that dont add up. but for now, there are no answers for us. it doesnt change anything. mckenna is who she is right? right.
but autism. it scares me. i dont know why it happens. none of us do. and that is unacceptable to me. i know there are a lot of diseases out there, some deadly, that have no cure. but autism is near and dear to my heart. the latest research shows 1 in 150 children will be diagnosed with autism.
that is not okay.
and something can be done.
this epidemic doesnt sweep a nation without a reason.
so, if you can help, please do. the lowest donation is $10. if ali’s badge is the number one badge on march 31, kevin bacon will personally match her total to donate to autism speaks.
it would be so amazing if that could happen for her. for her child. and for all of the children and familes that are affected in this world.
I’ve often wondered about your beautiful daughter. But I enjoy so much seeing pictures of her vividly showing her emotions. She reminds me of how we should all be, like little children and carefree.
Thank you for sharing this.
I LOVE you and and your family for loving Mckenna no matter what she is like…WITHOUT the label! We are leaving our current daycare lady because she insists on on saying that Charlie is ADHD. She wants us to do all these tests and therapy when we have already gone through testing at the school district and he tests normal and that he’ll learn just fine. So why should we put Charlie through anymore tests, interviews, ‘quiet’ times…CHarlie is Charlie and we’ll love him NO MATTER WHAT! We LOVE YOU McKenna..and you’re a beautiful person. Love Wendy, Charlie and Lorelai. (Charlie is 5y and Rori aka Lorelai is 3y and we look at your blog for fun pics of kids)
amen, sister! my #1 has spectrum issues and the night before we found that out ‘officially’ i journaled about the exact thing you said above. none of the names/labels change that you love your child beyond belief! thanks for the dose of inspiration!
I believe your daughter picked you as her mom before she was born. She’s a natural beauty…thanks for telling your story.
AMEN!
i was just scrolling down your blog..haven’t had time to visit lately and can I just tell you that the shot of the family and all of their hands brought tears to my eyes.It is a beautiful picture that captures soooooo much..wisdom,love,connectedness(if that is a word). I so badly wanted to do something like this for years with my Grandma, Mom and daughter. We are all first born daughters. Just a beautiful shot. Wish I would have thought to call you and get it done before it was too late…BUMMER! Thans for sharing.
I admire the fact that you are so real, so raw and honest in your post about your daughter. There are MANY who would not do the same, they live ashamed and want to keep their child’s disabilities a secret.
I agree with the other commenters that McKenna did pick you as her mom.
You are so strong!
Thanks for addressing this Tara. You know how I feel about Autism – you met my little boy. My sweet boy who got cold and needed a jacket. Thank you for lending a jacket. He is doing awesome by the way – check him out on my blog.
So proud of your honesty and courage. McKenna is a beautiful girl, you’re a beautiful Mom. God Bless you and your family.
It’s funny while people spend a lot of time wanting a diagnosis, we spent at least 3 years refusing to accept Alex’s. I didn’t want it. I flat hated the word “syndrome” and all it’s assumptions. Now of course I can say it, it rolls right off my tounge with not even a flinch… CHARGE Syndrome (there is goes again LOL). Diagnosis or not, these little people we have been blessed with are the most amazingly special souls. I am so thankful for every moment, just as I know you are.
Anyway just wanted to chime in & say thanks for sharing your story. I so admire you & your family, I wish we had gone on to have more kids closer in age to Alex. I think you are amazing ;)
Now I need to go get my ATM card & make a donation.
Tara – Wow. One thing I know about your McKenna – one thing that CAN be diagnosed – is that beautiful, contagious SMILE that is always so present on her sweet face in the lovely images you capture of her. She is so blessed that you are her mom, and you are so obviously blessed that she is your daughter. and i am blessed every time you share a glimpse into your heart and mind! Thank you for sharing this. I am moved to action!
all we need in life is acceptance and love – I think McKenna gives you her all and you and Jeff are the best parents she could have asked for. Go on loving girl – that’s all we’ve really got to give. You’re a beautiful woman in the truest sense of the word. South African good wishes.
Well said!
You’re a good momma, T. :)
“it didnt change our lives at all to have this diagnosis, other than to have a name to explain our daughter’s behaviors. and even when you give the name, people bring up images of kids in helmets banging their head against the wall and Rainman, neither anything like mckenna.”
From my heart to your blog. My son has an iep at school – I hate it. I hate that he has a “label” which conjures up a stereotype, a set of assumptions, for people who don’t even know him. This year, they evaluated him for a new label. I haven’t told anyone I know, except a select few friends. It scares me that people will see him differently if I tell them he may have Aspergers. The results of his school evaluation are that he does, but we are consulting a specialist before we go there. It scares me that his teacher next year will see an autistic spectrum label on his record before she meets my precious, wonderful little boy. Because he is the same bright, funny, delightful little boy he was before he had a label. But she won’t know that. She will know he is supposed to be this, that, and the other thing because that is what Aspergers is supposed to look like. Already, we have seen a change in how he is treated at school, and not totally for the better. He hasn’t changed, but everyone’s perception of him has. All of the sudden, he is treated like he can’t do things that he’s always been able to do, because Asperger kids typically can’t. I hate that. They look at my boy, and they see Aspergers … I wish they could see my son.
tara, i’ve “written” you this before, but i love that you are so real and honest and open. you write so candidly and make me, and i’m sure others, feel like you are their sweet next door neighbor, or big sister who gives great honest advice and would do it in a heartbeat if you needed her. thank you for sharing mckenna’s story. she is a beautiful young lady and so obviously loved by a wonderful mother and family surrounding her. =)
tara,
i have seen the thing on ali’s blog before and always wanted to donate. after reading what you wrote about mckenna, i went and did just that, dedicated to mckenna whitney. you are the best mom tara and i really admire you and the way you love mckenna.
tara
I’m a daily reader of yours and Ali’s blog and I forwarded Ali’s badge on to all my friends and family and encouraged them to donate.
My son is 2 and half and we have had concerns about some of his behaviors since he was 9 months old. Some of the things he did would make me think, “autism.” But then I’d look at all the other things he didn’t do or did well, and I didn’t think it added up. See, I had that old school, traditional idea of Autism. Fortunately, through reading Ali’s blog, I’ve learned a lot and been motivated to educate myself more and more. And in doing that, I’ve pushed a little harder with his pediatrician to take a look at what’s going on with my little guy. We are now keeping a close eye on him for OCD and/or executive function disorder. The problem is that not enough is known about these disorders and we need more answers.
And the more moms I talk to (friends and acquaintances) about this, the more children I realize are affected by autism spectrum disorders. 1 in 150. Those are terrifying odds.
I applaud you for never putting a label on Mckenna. Mckenna is who she is and she is an amazing child. I feel the same way about Ian. While I want him to be diagnosed so I can learn if there is anything more that I can do for him to help him live up to his full potential, we’ve already been dealing with this for two years. We know him, know his triggers, know what and how he will handle things and that’s just part of him. A diagnosis wouldn’t change much of how we live our lives or treat him. Everything about him makes him who he is and he’s a little boy who my husband and I adore and who brings us, his sister, and everyone in his life joy every day. No label will change that.
Thank you so much, Tara, for helping to promote Ali’s badge.
I love your attitude!
Tara….thank you for being honest about your story, your fears, and the love for your daughter. I am terrified of autisim. It scares me to my very core, only because there are no cures, no answers….the mommy in me would want to fix it all.
I have donated, but I am going to donate again, only because I fear that with the odds of 1 out of 150, it could hit closer to home that I would like to admit. I have had friends that have had this diagnosis hit their home. It has shaken them, but by no means has it changed the love for their children.
Thank you again for promoting this great charity. Hopefully we can get some answers soon!!!!!
Mckenna is lucky to have a FABULOUS mama like you!
Tara…
I was so touched by your post. I really loved and respected the fact that you wrote that McKenna is who she is, no matter what her diagnosis may or may not be. I really feel too many people emphasize differences and disabilities, and not enough attention is paid to who the child is.
Tara, What a woman! You and your loving family are the best! I wish that every child could have that love and acceptance! I too, have been reminded how lucky I am to have had four children whom I love dearly. Here’s to you and yours! You make life so much better by sharing with your readers! Thank you.
amen to that! thank you so much for being so honest….it really does make a difference. j
great post Tara–off to donate. :)
another beautiful post Tara!
thanks.
I understand. Although we have 3 healthy children, our first child had a syndrome. It was nothing as simple, it was fatal.
We learn in life that things arent always easy. But we have to choose to accept life, the way its given. McKenna is a stunning child, and touches hearts. She touched mine along time ago.
Her mothers work, touches my heart on a regular basis.
Thank-you Tara, for being You!! You are an incredible person, who I oneday hope to meet. (I actually told Emily that when I get back to the USA, she had to introduce us..HEHE)
You know how much I love you already. I feel so lucky that I have been able to meet your family and be in your house and be a part of your world even for just a night. Your family is the best. McKenna is the best.
Well said. And i know that a lot more than ~660 people have seen that badge. Each person’s little bit can go a long way. Love your honesty and attitude.
my daughter has a muscular dystrophy – an unknown type but it leans towards myotonic dystrophy. She also has autistic tendencies such as expressionless responses, gifted in one small field – suffers the rest of her abilities.
I share your frustration about not being able to get a diagnosis. A diagnosis would mean receiving and giving her the right support.
Banging your head against a brick wall is not something i enjoy doing but Im getting used to it.
I will give to ali’s cause. Its all I can do but I so wish I could wave a magic wand as well.
thank you for sharing this tara.
I grew up with a sister who is mildly mentally retarded, thought to be due to a lack of oxygen at birth. She’s 46 now. In those days there were’nt very many labels, kids were just called ‘slow’ in the main.
We knew several families who also had a child each who was retarded, all of them more severely than my sister. Again, I never heard of a label or a syndrome.
We accepted all them for who they were. Spoke to them the same way as we did the other children, making allowances for them in a natural way. They could’ve got more help than they did, which is the big improvement between then and now, as the lack of help affected my sister in a terrible way..she was sent to a normal school for instance, without support. It was very hard for her.
With all these children I saw different traits. No two of them were the same. They all had their different ways.
The massive problem with autism now worries me a great deal. Thank you for making this post. It has been enlightening.
Thank you for posting this information.
Tara, thank you for this moving and very personal post. Everytime I come to visit your blog, I think, dang I wish she was my mom, or how much I long to be a little more like you. Your children just shine. It is more than just the photograph, you can see how much they love you, how much they care for one another. One picture that stands out in my mind, and when I saw it, I started to cry, but it was the one of you and Mckenna holding hands on your after school walk. How precious it was, it was an image that I keep in my mind, and hope that someday my kids will look at me with the love she was looking at you! Thank you for sharing yourself, you make this world a brighter place!
what a brave and powerful thread. thank you for sharing this tara!
McKenna is a beautiful young lady. Her smile is contagious. Tara thank you for sharing your story with us.
“what does that mean? well you go through a lot of research. you read a lot online. you try diets and vitamins. and then, for us what it meant was to carry on just like we always did. it didnt change our lives at all to have this diagnosis, other than to have a name to explain our daughter’s behaviors.”
I so can relate to this, having gone through all those tests and diets and struggles to figure out what is wrong with your child. It tears at your heart – but the truth is, just like you feel about Mckenna, that’s how I feel about my Samantha. Knowing she has a diagnosis (at least in part, we have always felt there is more to what has gone on with her, although we’ve never found a name to explain the rest of it) is only that. It doesn’t change who she is or how much we love her or any of that.
I’ve dealt with Autism in my life, too. I have a cousin who has it. She started out when we were kids as one of the ones on the severe end of the spectrum. Over the years, she improved, to the point that she now, as an adult, holds a part-time job and can do many things for herself that none of us ever thought she might be able to do. If she had never changed, though, it wouldn’t have mattered to us in terms of how we feel about her. We love her.
The one thing I can always count on reading your blog, Tara, is that love of your kids just shining through in all you do and say. They are lucky in this world to have a mom like you who loves them so much. So many kids don’t have that.
Thank you for not applying the labels. The labels are not always helpful. They are not always beneficial. As a teacher I saw so many children who were labelled, medicated and left to be. I was reading this and remembering the long line of children at the office. I thought they were getting tuckshop (canteen) or something. It was the medication window. My heart broke then.. as it does now remembering that.
Our son was well on the road to similar misfortunes. We were lucky enough to be able to isolate the food additives causing the problems. I now have the nicest, best behaved child in our group of friends (cutest too if you ask his Mummy!) But it isnt always the case. I have an uncle who has undergone similar issues to mcKenna.. he is now 54.. and a gorgeous human being. Skip the labels and keep doing what you are doing. You are the best mother she could have – and you are doing the best job I have seen a parent do in a long time!
Tara, I love this post. You so eloquently worded so many of the same thoughts and feelings I have about my own family. My 2nd, about to turn 2, is the sweetest little being, and he – like Mckenna – has an “unknown syndrome”. We have only been on this journey of tests, therapies, speculation, etc for a year and half, but it has been quite an intense and wild ride. Rob & I, much like You & Jeff have decided that we really don’t care about diagnoses and are not willing to put our baby through more grueling tests to put a label on who HE IS. He is SAM, and Sam is wonderful. Only if there comes a time when he needs some sort of treatment that requires a diagnosis will we go down the testing road again.
Isn’t it interesting that there are so many kids nowadays with “unknown neurological syndromes” or autism? There’s something to it that must be discovered.
I love your motto “Just be …”. ITs such an important reminder for me everyday.
Thank you for sharing yourself.
I am so glad you posted this! YES we need to ask these questions and find the answers. I started doing alot of research on different things related to health after I gave birth to my 3rd son. Anyway to make a long story short–their is a link between autism and immunizations. I hope we can come to the bottom of this soon!
My son Andrew has autism spectrum disorder and we could tell something was up when he was 6months as well. We talked to doctors but they just seemed to pass our concerns off. He was three and a half before he was diagnosed. If I could do things differently I wouldn’t have given up so easily on my concerns. You have a wonderful site.
I’ve written before, my oldest (also about to turn 11) is on the spectrum — very well said post. I’m off to read Ali’s blog — thanks for reminding us.
Hi Tara,
We haven’t met but I know your brother through World of Warcraft and we’ve collaborated on some writing together and he’s just one of my favorite people. So that’s how I found out about your blog and I pop over here every now and then just to see what’s new with your amazing photography. Shane has mentioned McKenna before, and she didn’t sound quite typically autistic, so I’m not too surprised that the diagnosis has changed.
You’re right that a diagnosis can be helpful — there’s a reason why we have such a need to label and categorize things. It’s part of how our minds work. But only a part. We are all atypical and unique and fascinating in our own ways. And we all have the potential to live astonishing and meaningful lives, or the potential to waste the time and talents we have, whatever they are. Your work shows that you know and appreciate this already, and I think McKenna and all your kids are very lucky.
Post this comment or not, as you please, I just wanted to say this to you because I’ve come to feel as if I know you a little and it seemed time to say hi.
she has the most beautiful eye – i love seeing her photo becuase she is so full of unconditional love.
Tara,
I was just catching up on reading your blog and I can’t help but wondering if anyone has ever discussed the possibility of Rhett’s (not sure of correct spelling sorry)Syndrome with you. A very good friend of mine’s daughter has this syndrome and your daughter looks exactly like his daughter Sydney!!!
Please contact me at my email address for further info.
Thanks,
Margie R (from Canada)
I am an avid reader, but rarely post due to time restraints. I am lucky that I have time to read your blog these days since I am finishing up my nursing degree this semester!
I first started reading your blog when Mckenna was just coming home from the hospital. I don’t even remember how I came across your blog now! To watch your children grow up and to watch your family with each other is amazing. It is like I know you personally. Some of my favorite pics are of you and your husband at a wedding. I had just gotten a divorce and it was nice to see a couple be the way you are with each other, even with four kids. Your blog always gave me something to smile about back then. It is now one of those rituals.. checking to see how Tara is doing.
I really am not sure what I am posting about, your blog just really hit me today. You are an amazing mom, and you have an amazing family!!
Hello, I just read this on your blog, clicked on it from Liz. It is is exactly how I feel! I dont have anyone personaly affected by it, but I dont know if too many people know this,(my cousin dated Kelly Prestons (john Travoltas wife) brother)and knowing them we found out that there son is Autistic. You notice that you never see a picture of him or him at all?? Well it got me and my cousin thinking alot about the subject. We asked Kelly and that is the reason she is so into the enviroment…… Made me start thinking of what is in our environment that we are not aware of! You are soo right this is not ok to just sweep this under the rug!!!!! Kind of like what they have been trying to do with Global warming! thank you for writing this Blog!! -Lilia