Sunday, April 29, 2012

Autism Awareness Month

Autism Fact: Researchers recommend autistic testing if a baby doesn’t babble or coo by 12 months, doesn’t point or wave by 12 months, doesn’t say single words by 16 months, doesn’t say two-word phrases by 24 months, or loses previously acquired language or social skills at any age. 

 The last thing any parent wants to do is admit that there may be something wrong with their child. In our eyes, our babies are perfect and the most wonderful things in the world. We love them so much that it sometimes makes us blind to the most obvious things.

 Ken and I found this out painfully around the time Joie was two. Then one day we had to face facts, our daughter had yet to speak a word and we needed to find out why. No matter how painful the truth may be.

After Joie was first born she met all the milestones, but somewhere around eight months her progress slowed. When other children were walking, she was still crawling. While other kids were talking in full sentences, she would only grunt and point. Where you could somewhat reason with other children, when things did go her way she would have massive meltdowns.

We heard all the excuses and arguments. It’s because she’s the youngest. It’s because her brother is so much old and you all spoil her. Maybe she’s not hearing because she had so many ear infections.

We finally decided that we needed to find the answer for ourselves. So, we took her to various specialist, teachers and doctors and found out…nothing. They couldn’t explain to us why she wasn’t talking or why she was so emotionally delayed. Worse they couldn’t tell us how to make it better. For you see, we were still at the stage where we hoped that there would be some magic pill that could make things all better.

At three they put her in early intervention classes. Joie began to speak some, but only close family members were able to understand her since she was unable to form certain sounds. While on the outside we would jokingly call it Joie-eese, on the inside we were crying. It was so heartbreaking to see how frustrated she would get when she tried again and again to get her point across. Only to have people not understand her, no matter how hard she tried.

Joie eventually made up her own form of sign language. While it helped with teachers and family members, the translation would be lost on the rest of the world. To make matters worse, Joie was becoming painfully aware of the strange looks she would get when we were out. I think the most hurtful incident was when we were at a grocery store and a lady asked me is Joie was retarded. WTF!!! Mind you my daughter was standing right next to me at the time and she heard every word.

As the years progressed, Joie stated elementary school. She was in a regular class, but they would pull her out for speech and special needs classes. Even with all this intervention Joie still fell several years behind her class members in reading and math. That divide still remains to this day. Meanwhile another gap reared its ugly head. Joie was also behind emotionally. So, while she may be ten years old on the outside, mentally she is seven.

Let me tell you this was one of the hardest hurdles to come up for us. Kids can be cruel and they never fail to remind Joie of how much of a baby she is and how they don’t like her. So many days I pick her up at school and have to dry her tears on the way home.

During all this we couldn’t help but wonder if maybe Joie was suffering a form of Autism. Then as we about to lose any hope of ever finding an answer, help came from two separate sources. First, we switched to a new family practitioner. Not only is Dr. Shawn Conner a fantastic doctor, but he is a wonderful human being. He immediately shared my concern and referred us to one of the best pediatric neurologists in the State. The second development is we got accepted to a new program at U of M hospital. It was targeting at diagnosing and treating children with autism.

We eventually found out that while Joie doesn’t have autism, she does suffer from neurofibromatosis. It a disease that can affect both speech and emotional development. Like autism, there is no cure or magic pill for this disease.

Maybe we should have been upset with this news, but as strange as it sounds, we felt an immense sense of relief, because we finally had an answer. I think my father put it best when he said, “At least you’re not fighting a ghost anymore. It has a name and you know exactly what you’re up again.”

People have often asked me if there is anything I would ever change about Joie. The answer is simple—hell, no. Joie is perfect the way she is. She’s better than perfect. She the amazing ability to see beauty in anything. Just walking down the street with her is an eye-opening adventure. She will point out things that the jaded population has looked over for far too long. Be it a pretty bug, or the perfect flower or a nest with a mama bird in it. She also has a connection to animals that is almost magical. In a way she relates to them better than she does people.

I’ve shared this song before, but I think it’s only fitting that I mention it again. One day when I was in tears over how cruel life has been to my daughter, this song came on the radio. By the time it was over I was crying for a whole different reason. Then I said to myself, “Yes, she is perfect. Just the way she is.” Thank you for taking the time to read this.

I apologize for any typos. Once I got stared, the words just started pouring out and my fingers had trouble keeping up. I would go back and edit it, but I’m a bit emotional at the moment. I will be giving a free pdh download from my backlist away, so comment below to enter. Plus, make sure to watch this video below. I hope it touches you as much as it did me.



  1. Thanks for sharing your family's story, Steph. Having a name for something is a powerful thing.

  2. Beautiful! I don't personally know your daughter, but from your posts her and on facebook, i can see she is a wonderful child with a family that loves her immensely. Hugs to you all!

  3. Thank you for sharing your story, Stephani. Joie is a beautiful, wonderful, amazing little girl. She is truly a blessing.


  4. Your kids were lucky enough to get the best mom possible for them. Mothers should always put their kids above all and love them no matter what. I have the most respect for women (and men/fathers) who understand that their children are relying on them to be their defender and advocate. God bless you for being one of them that truly understand this - not all of us out there get it. Most of us, but not all.

    Laura Aleman Striplin

  5. *hugz* You're right, Joie is perfect just the way she is. Thank you for sharing this story. I've noticed that kids who are not at the same "level" as their peers emotionally or socially or mentally usually make up for that difference by being prodigies or as you stated being "magical" in other areas. I'm glad that you're no longer fighting a ghost, but more than that I'm glad that Joie is surrounded by a family who loves and supports her and parents who support her and think that she's "perfect" and wouldn't change one thing about her. That is beyond special and makes her a very blessed child indeed.

  6. Oh god S...we have so much in common... i owe you the biggest hug in September...


  7. You have an amazing daughter. Reading this post brought tears to my eyes. I wish all children (Special needs or not) had parents like you.

  8. *hugs* Steph. I completely know how you feel. I felt such a relief over my youngest finally being diagnosed.

  9. Oh, bless. Thanks for sharing Ms. Stephani and thank you for being so delightfully fierce when you share about your children

  10. Thank you Stephani, for your touching story... I am not ashamed to say you made me cry. Not a day goes by where I don't worry about my three yr old being so much behind in het speech. We just now got into the specialists office (finally), and we hope this will start to give us some answers.
    Reading Joie's story reminds me how special all those little boys and girls are. Thank you so much!

  11. Stephani Thank you for your post and for the love you have for your kids. I have ran across people in my life, who have said things about my children or even what caused their diagnose. and I sometimes wonder WTH!!! I would also say if someone even a doctor says something you do not agree with get a second opion, I know that you kmow that, but most people think there doctors they know what they are talking about, but always follow your gut instinct. I hope you have an Awesome day!!!

  12. As a parent of two beautiful girls, age 6 and 11, I have to say I have days where I want to just reboot and start over. My girls are 100% healthy and I feel very lucky for that. You Ms. Stephani and all the loving mothers of challenged children with Autism or any other special needs issues are my heroes. I will spend the day crying about how my girls didn't clean their room, or how they talked back or got an attitude and then I read a post like this and realize I need to pull up my big girl panties and get over it. I read your posts and Amber Kell's posts and realize how very lucky I am. You are also lucky to have a beautiful girl who like you said, can appreciate the small stuff that all we grown-ups are just way too busy to notice anymore. I am glad you have a diagnosis and I hope that helps your girl in the long run. How intelligent she is to make up her own sign language, I wonder if any of us would have the drive to do that??? I wish you and your daughter all the best in the future. She seems like an amazing young lady.

  13. Thank you for sharing your story. I dont have any kids, but it made me cry a bit anyways. It always makes me so happy to see parents who love and support their children no matter what. I wish you and your beautiful daughter, Joie, all the best.

  14. A friend and I had a conversation last night about what a "normal" childhood entails in today's world. He has three absolutely amazing children and I told him that I thought it was wonderful that they were able to grow up sheltered, happy, and secure.

    Of course, his reaction was that his children had a normal childhood, unlike he and I. My response was, his children had the childhood that we would all like to think is "normal", but truly isn't in this day and age.

    I am always impressed to hear these stories where parents are working so hard to give their extraordinary children childhoods as close to "normal" as is humanly possible. You will be rewarded with amazing children that grow into brilliant adults.

  15. She is beautiful and you are a fantastic mom to love her "just the way she is"! It can be so hard to take that step back from your own expectations and emotions and give that unconditional love to your children - well done!

  16. Very emotional post. I am stunned that so many of my favorite authors are dealing with these issues. Keep the faith!

  17. Wow im glad you found out what it was & you dont have to worry about it as much anymore.

  18. Thanks so much for sharing Joie's story with us. I totally agree with you. No matter what the name of the disorder is, just having a name is a load off your mind. With a name, you are not just stubmling around in the dark trying to find somethins, anything that might work. Once you have a name for the problem, you can address it properly and deal with it. A name allows you to cope (and to finally have realistic hope). I struggled with my child for years until he was finally diagnosed as on the spectrum (at age 12) and know the heartbreak that not knowing and wondering what is wrong can take on a family. Blessings to you and your family.

  19. Thank you so, so, so, so much for all your wonderful comments. We had Joie's yearly IEP meeting with her school. She is still behind in reading, but she is improving more quickly. She loves books and writing, so once she gets the hang of it, I think there will be no stopping her.