This is very difficult for me (a very long, non card post)
Since I have become a mother I have been passionate about autism. Learning about it, trying to support causes to find cures. And just trying to understand it. I have never known why it is that I’ve been fascinated by it, just that it was something that I was pulled to.
The statistics for autism are horrible,
- A new case of autism is diagnosed nearly every 20 minutes
- One in every 150 children born in the US has autism
Yesterday, my youngest daughter Audrey was diagnosed with autism.
This was something that I felt coming for some time. I had brought it up with her pediatrician at 12 months and again at 18 months. But because Audrey smiles and makes eye contact it was brushed off. Nearing her 2 year checkup I realized the drastic differences between her and our older daughter Ava. I started to read about the milestones for 2 year olds and Audrey did not measure up. The more I read, the more the signs pointed to autism. Again, at her 2 year checkup we told her pediatrician our concerns. We were given a referral to a speech and occupational therapist to help her speak, but she did not believe she was autistic.
I spoke to my therapist about this and she was able to connect me to an advocate, who could help us. And yesterday was when we saw her and got the diagnosis I had known for the past 2 months.
We are in a very small minority with our health-care. Sean works for Microsoft, and because of that we are able to have advantages that most families don’t. While I am beyond grateful, I also feel terribly sad and guilty. I know I shouldn’t, but I do.
We are lucky that Audrey has fantastic eye contact, smiles and mimics. These are her strengths and we are fortunate she has them. She had her first speech and occupational therapy appointment today and they were able to get her to say something that sounds like “bubble”. I was beyond happy.
I didn’t feel right about not sharing this. I have been public with my concern for autism awareness and this just didn’t seem right to keep to myself. At first I thought it was a cruel joke, that I had been so drawn to autism only to have a child affected by it. But now I realize that I was drawn to it so I could recognize it and help my child when others wouldn’t have seen a problem.
This week has been very bittersweet for me. I had the MFT guest designer spot win. I got the “golden ticket” from Gina K. But then I find out my fear.
I know that this is not cancer, and she is healthy. So please don’t think I am trying to be dramatic. But this is also the first time I have ever had to deal with something like this. Ava was hardly ever sick, I think she has had 4 colds in her almost 4 years. I am grateful and happy and I feel blessed that Audrey is as well as she is. But it will take me more than 24 hours to feel ‘ok’ about it.
I’m going to leave this post with a few pictures of my baby girl. Thank you so much for reading my loooooong post.
39 Responses to “This is very difficult for me (a very long, non card post)”
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Elizebeth,
I don’t know what to say. I am glad the doctors finally diagnosed your precious little baby girl. I am glad she has all the milestones you listed!
My heart goes out to you. From one Mom to another. Having your kid diagnosed with something that will stay with her for the rest of her life must be hard! I am not very eloquent, but I just wanted you to know that
you and your family are in my thoughts and prayers!
{{{{{{cyber hugs}}}}}
Thank you, Elizebeth for sharing this. I am surprised to hear that she is autistic. I am also encouraged that she is doing well. I have met in my career many autistic people and many that have jobs and function in society. You are a brave woman to face this head on. I am proud to call you my friend.
Scott and I will be praying for Audrey, Sean and you. If there is anything at all that I can do, let me know.
Love,
Crytstal
Elizebeth,
That post must have been so difficult for you to write, but I always find that just having it out there helps to relieve my heart a little.
As much as a “diagnosis” is hard to hear, at least it puts you on a path to get the proper assistance. Last week, I just had my youngest admitted to our Early Intervention program for some sensory issues. While nowhwere on the scale of what you’ve just learned, I had to restructure our lives to make things easier for him. I resigned to clients from my business to make our days a little less hectic for him.
None of us ever want to hear that our child isn’t the typical perfect, but she’s perfectly her, and that’s all that matters. And all that matters is that you can be the best you that you can be for her….mothers intuition, we always know when things just aren’t right, and thank goodness you were so aware that you could get your baby the help she needs.
Wishing you all the best…..
Lots of (((HUGS))) to you Elizebeth Isn’t it funny how God knows what we need, before we know that we do ourselves. Good for you for detecting it early and getting help right away. You’re heads and tails above some families who don’t. I know none of that makes it easier - you’re in my thoughts and prayers.
Your not being dramatic at all~this is a defining diagnosis, and is probably overwhelming. Thank goodness for your keen motherly sense and into researching it on your own.
Wishing you positive thoughts~
When I was 18 “Rainman” came out and I fell in love with that movie, it is still my favorite movie probably, little did I know it would one day have a special meaning for me!
Autism is fascinating in a way, and autistic people amaze me.
When I see those pics of Audrey all smiley and looking at the camera…waow! I can tell you Noah at 2 was nowhere near that!! And you should see him now all smiley and cuddly and laughing his head off. (I will e-mail you pics).
When he was diagnosed my heart missed a beat…, unlike you I didn’t know much (what I had learned in nursing school was very little!!!!) and I had the same misconception a lot of people have -> kids locked up in their world forever! Now this little guy teaches me things every day and boy he is a joy to have in my life!
We all need some time to adjust to that kind of diagnosis though! It hurts to see your child struggle to learn what other kids do naturally without even thinking about it.
What I have learned though, is that we are extremely fortunate to know what’s going on with your kids. I have “met” people (on the web) whose kids have disabilities and they don’t have a clue what, the doctors are no help either. It is heartbreaking.
It is our strenght that we can look for answers and that we have things we can do to change our kids’life for the better.
I’ll be happy to help you any way I can.
(((hugs)))
I am sorry to hear of your difficulties Elizebeth…with being exposed to this condition more and more this past year, I cannot even fathom the enormity of this for you and your family. At the very least, I’ll be thinking of you and hoping for all the best.
I am so sorry to hear about your news, however as a mother of a daughter with autism I can tell you that you are about to embark on one of the greatest journeys of your life. Through my daughter’s eyes I have learned more then i have ever thought possible, these kids are so special!!
Here is a poem that I love I hope you enjoy it to!
Ode to Special Moms
(by Erma Bombeck)
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
“Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia.
“Rudledge, Carrie, twins, patron saint, give her Gerard. He’s used to profanity.”
Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” says God. “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world, and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.”
God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word.’ She will never consider a ’step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her child, she will see it as few people ever see my creations.
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.”
“And what about her patron saint?” asks the angel, pen poised midair.
God smiles. “A mirror will suffice.”
I am so sorry for the difficult time you are going through right now. Our neighbor has 2 boys who are autistic, one more profound than the other. I admire her for her patience and love she has for these boys.
Hugs,
Kandi
Sending hugs your way, to you and your girls. Oh gosh, she is just beautiful! As a mother, I understand that those hurdles in life that involve our children, are the most difficult and painful to deal with. Like every other hurdle we face in life, time and strength will lend its hand in helping you be “ok”. Love to you and your girls.
I sent you an email Elizebeth… Thanks for sharing your story with us, it is so touching and candid and I thank you for that. Audrey is a bright, beautiful girl and am thankful you are there to lead and guide her on this journey.
Big hugs,
Kim
Oh boy.My heart is heavy for you right now-
I have been where you sit. A different diagnosis, different time-a few times actually. Daowen Syndrome, heart surgery, cancer.
Its the same sinking feeling. The same nightmare everytime. It does get easier.
While our children have different issue’s I know how you feel right now.
I can tell you this heavy weight will lighten, and this burden won’t be so evident as time passes.
Im happy you will get the help you need for her. I know before you mentioned your concerns. Dont feel guilty. You are a good mom. You just didn’t want your suspicions confirmed.
She is so beautiful and like a flower she will bloom and grow, with a little more “watering” and tending to.
I am here for you if you need to “chat”.
I know you are going through a range of emotions-all of them are normal.
You were chosen for a reason. Try to remember that NO ONE could care for Audrey.
I noticed in your post you said “I know its not cancer and she is healthy…..” A mother sheart ache, is a mothers heart ache. No matter WHAT it is, pain for your child is universal. One mother’s pain is no greater or less. You HURT, and thats OK! You dont need to apologize, justify or explain.
Give it time.
Hugs and prayers my friend-
Just know you have the prayers and support of so many.
Sorry about my errors! I had so much pouring out!
Oh again-sorry-I meant to say No One else could care for Audrey like YOU will-my sentence ended-I got distracted from kids NOT staying in bed
Your daughter is beautiful and I think you are a really special mom. I admire you.
I’ve looked at your blog and WOW what beautifull card you make!!
I got transferred to your site from Nicole’s blog…anyhow thought I would comment. About 1-2 months ago I was watching Montel Williams and they had a Dr on there who had done incredible work with Autusm (I think he was in NY but sorry I can’t remember his name) He and a family come who he treated and the Mother says that he cured her child and her son no longer has autism…maybe if you check their website or contact the show maybe you could contact him. Thought maybe he could help.
Julie
I am very touched by you sharing you heart ache. I also found out about my son at 2 years old. Please don’t minamise your pain, you have every right for you heart to hurt. It is a grieving period and then it will be ok. My Sean is almost 5 now and he is so special and has filled my heart with such love. We all love our children, but these kids become something special. It is very hard dealing with all the therapists and things, but it is all worth it. Be strong and do not feel bad because you are a Mother who’s heart is sad. Keep educating everyone and maybe some day people will catch it earlie as we have. She is just beautiful and I wish you all the happiness in the world. It will be ok, I promise. Ever want to chat send me a line! Love, Kit
I don’t know you, I just found your blog from the black apple blog.
I read your entry about your precious daughter. I hope that you do not feel guilty about expressing your honest feelings & even though it’s not cancer, it is probably on the same level emotionally for you. You have a right to grieve for your baby girl.
Sharing this news will probably prove to be very helpful to you and to others.
p.s. she is sooo cute!!
Elizabeth, your story and your daughters pics brought tears to my eyes. First of all, she is beautiful. None of us want to hear that there is ANYTHING wrong with our children, cancer, diabetes,learning diabilities, autism. It does not matter what it is, it brings our world to a screeching halt and it takes time to adjust. My very best friend has a son who was diagnosed with autism at about the same age and with the proper therapy he now is doing wonderful. As a matter of fact when I tell people that he is autisic they are surprised. He does not really present any symptoms anymore. Keep faith and know that your daughter is strong and with the right therapy she too may one day overcome this.
Hugs
Stacy
I came here to wish you a Congratulations on your Honorable Mention, and my heart broke reading your post! You and your family will be in my thoughts and prayers! My middle child will be 2 in June, so seeing Audrey really reminded me of her. God Bless You!
Huge hugs girl. I cannot imagine what you are going through right now but I just wanted to add my love and prayers to the long list ahead of me.
On another note….huge congrats on all the dts and on honorable mention from PTI. You are such an awesome crafter, MOM and person.
HUGS!
Cammie
First off, can I say what a cutie pie she is.
My thoughts and prayers are with you. BIG HUGS!!!! I can only imagine what you are going through, please let me know if there is ANYTHING I can do to help!!! Just take one day at a time.
Elizabeth,
My thoughts are with you. I’m a special education administrator and I see it all the time, especially since part of my job is working with infants and preschoolers. Hang in there and just know that even with the diagnosis, Audrey is still the same little girl that she’s been who loves you and who you love.
Elizabeth, I just said a little prayer for Audrey and your family. With all of the new studies that are out there, it seems there are many more options available than even just a few years ago. I will keep all of you in prayers and thank goodness for your motherly instincts. Audrey is an adorable little girl!
Just an hour or two after I read this post, I was directed to this video through another friend:
http://www.whatkindofworlddoyouwant.com/videos/view/id/408214
My heart goes out to you — and my prayers will be with you as you work together with Sean, Ava, and Audrey to navigate this path together.
Hey Elizebeth,
I truly can’t find the words right now. I’m so very sorry for what your baby girl and your family are going through right now. I can only imagine how you and your hubby must be feeling. Know that God truly has a plan and a reason. She is so so so BEAUTIFUL!!!!! I love those pictures & I know that things will be okay!!! If you need anything…anything at all… PLEASE let me know!!! Love and Hugs! Ash~
Elizabeth … your daughter is lovely and I believe there is so many medical advancements out there today. Did you see Jenny McCarthy on Larry King Live? Here is the transcript link (if it gets through). If it doesn’t get through PM me. I pray for you as you learn about this and please share your experiences if you fee up to it. Karen
http://transcripts.cnn.com/TRANSCRIPTS/0710/07/lkl.01.html
I am so glad you shared this on your blog…it couldn’t have been easy. I am so glad that your family has awesome health benefits to get Audrey all of the medical support she will need. You are an amazing mother and person- Audrey is very lucky. Wishing you a positive experience on your journey. I am glad you trusted your mommy instincts to seek out help for Audrey.
XOXO
No matter how long you have suspected that there is something “not right” with your child, you are never prepared for the moment you are told your child is Autistic. I know you don’t feel it right now but you and your daughter are very lucky as you already have a great deal of knowledge and understanding of Autism and how that may affect her. When my son was diagnosed I knew hardly anything at all. Now, however, I could write a book!!
I notice someone has already posted Ode to Special Moms
(by Erma Bombeck)in your comments. I think is fabulous. Another one I like is this:
“Welcome to Holland” By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
and it’s very true!
Wishing you all the best.
Hugs
Fe x
Elizabeth,
You don’t know me, I saw one of your cards on SCS and came to your blog. I just want you to know that I feel very strongely that you will be one blessed family for the sacrafices that you all will make for such a sweet little girl.
My heart goes out to you and to Ava who will wonder why her sister needs so much special attention. Your Angels will be with you and your loved ones watching and protecting you during this special road that you will travel. God bless for sharing your pain and letting others reach out to try to ease some of it for you and to pray for you and your family. Many wonderful blessing will come your way.
Hugs,
JeanAnn
My heart is aching for you Elizebeth.
Big HUGS!
Wait, You know what I mean….
I become speechless when I hear things about kids and I wish I could help.
{{{{{{{{{{{HUGS}}}}}}}}}}}} Elizebeth. You know we are here for you whenever you need to talk. Your little girl is adorable.
Congrats on the DT spots!
Elizebeth my heart is heavy for you this morning, a big hug to you, you daughter is beautiful, a big hug for all your family.
Cindy
Elizebeth—
I have worked with adults with severe learning disabilities for many years…with Autism and many other diagnoses. I’ve known parents that have given up and not dealt with their child’s diagnosis. I’ve also known parents that have been by their child’s side and fought for them every single step along the way. These are the children that break down every ‘barrier’ and every ‘norm’ presented to them, who astonish and amaze everyone with the strides they’ve made throughout their lives. It seems that God has been guiding you, preparing you, for a very long time already….your interest and work for Autism during these past years has already given you and your baby girl SUCH a head-start. To the core of my being, I truly believe that God NEVER gives us more than we can handle. Through all the days, months and years to come, I hope you’ll try to remember that…He’s already shown you that He thinks YOU are the perfect Mom for Audrey. You may be following a different path than you had anticipated, but, with you by her side, her life will STILL be amazing. I hope you gain strength in knowing that you, Audrey, and your entire family will be in so many people’s prayers.
Pam
The Lord has given me the privilege to work
in Sunday School with two wonderful children
with Autism. They are so special and I know
that He goes before you in all things. As a
matter of fact I love the way that that these
children have challanged me to see through
the eyes of Love. They are so highly
intelligent that I sometimes wonder if we
are the ones that need them to help us cope
in this life of ours. You are blessed to
be the mother of such a special child. May
God surround you with much joy, peace and
wonder at His creation. Ms Lydia
[...] may have read Elizebeth’s recent post on Audrey’s initial assessment of autism, so you know something is going on. Today we [...]
[...] may have read Elizebeth’s recent post on Audrey’s initial assessment of autism, so you know something is going on. Today we [...]