Being Hannah’s Mom
For those who read my blog regularly, you know that I am mom to a precious 9-year old named Hannah. You also know that shortly before the age of 3 she was diagnosed by Dr. Stephen Camarata at Vanderbilt University with a severe mixed expressive-receptive language disorder. The simple definition of this is “impairment in ability to both understand and express language”. The specifics in the DSM-IV can be found HERE.
One of the early challenges I had in being Hannah’s mom, was dealing with people “diagnosing” her as being autistic because of her language difficulties – these were people in grocery stores, parks, libraries, churches, and anywhere else you can think of where people have no business (nor expertise) sticking a label on someone else’s child. Until today, I thought those days were behind us.
While about town yesterday, a person who “knows” me because of my work, but nothing more than that, said to me “oh, that’s your daughter, someone told me you had a child with Down Syndrome”. Wow, that’s a new one. I was not irritated with the person who said this, but with the person that gave her this information. I was greatly troubled as I realized that people are still “diagnosing” my daughter and sticking labels on her.
My little sweetie has made amazing progress. She is in 4th grade and struggles academically only with math. She is an incredible reader and can out-spell kids twice her age. Her ability to explain, define, and discuss a story or situation has improved exponentially. The subtle nuances of complex conversation is where she continues to struggle but she is growing and making strides even with this everyday. The other thing that probably sticks out to people is that she seems younger than other 9 year old kids. Because we homeschool, she is not exposed to the “hyper-aging” that society pushes on kids. I happen to believe that at 9 she is still a little girl and there’s nothing wrong with coloring, playing in the sandbox, 
drawing with chalk on the driveway, and playing with dolls. So, instead of talking about a “boyfriend” or texting pictures of herself in revealing clothes, she is talking about a book about Harvey the Great Lakes Whale
People should not diagnose anyone else unless they are a trained professional and that person has come to them for a professional evaluation. If someone wants to know “what’s the deal” with my daughter, they should ask me … I’m her mom, and I know every inch of the development road we have traveled, and honestly it is an adventure I love to talk about, as it is a story of God’s perfect timing and grace. Unfortunately, most people don’t really want to listen, they just want to talk without knowing the facts or the history of our journey. Even those who do say something, tune-out as soon as I start telling them about her diagnosis and the road we’ve traveled. I do grow weary at times when someone casually sticks a label on my daughter and then when I begin to tell them what the truth is, they either walk away or start a conversation with someone else. Sometimes I just want to scream: “hey, you just stuck a label on my kid without even knowing her, so now you’re going to listen to me!”. I don’t ever do that, because it would just be a lesson in futility.
I am feeling a bit like a grizzly bear this morning. I know my daughter has challenges. I know that she still struggles with the nuances of language. I know that she is “immature” compared to other kids who are 9, and that is as much a product of my allowing her the time to be a little girl and not rushing her into age-inappropriate behaviors, as it is her language disorder I know that she is sweet and funny and gentle. I know that she is sensitive and thoughtful. I know she is appreciative and thankful … she has never been a greedy, selfish child. I know that I am her mom because of God’s perfect plan, and I wouldn’t want it any other way.
OneMom
For those who would like to read more of our story:
Teaching Language vs. Teaching Comprehension
Hello on a sunny Sunday! I appreciate how you took the time to explain the challenges and triumphs that your little gal has already experienced in her young life. You are a wise mom and she is blessed to have you. In my experience, first-borns are often a bit immature or delayed socially (and I don’t mean that in a bad way, trust me!) Society seems to be ever hastening the growing up process, especially for little gals, and it breaks my heart.
Some of my best memories of the elementary years include having time to imagine, being outside with our dogs, making “play-houses” in the woods right next to our home – and just riding my bike up and down the block (well, it wasn’t really a block – we lived next to the church parking lot – that was my block!) It was a challenge to create the same environment for my kids, when it was my turn to be the mom and make sure my 3 had the space to play outside and the time to use their imaginations. But I did, and they did!
Thanks for taking the time to post this update. She is your one girl, and you are her one mom, and she sure seems to be a happy child. God bless your family.
Thanks Susan. She is a very happy little girl. As she gets older, she is becoming more aware that people are “judging” or “labeling” her and I find her sticking very close to me when she sense that she is “not measuring up” to someone else’s expectations.
I think it is interesting to compare the “maturity” homeschooled kids with that of PS kids. As teens, the homeschool kids that I have met are far more mature in the true meaning of the word. They are kind and polite and often think of others first. Teen boys can play with babies and open doors for mom-aged people without feeling strange. Yet I am sure these same young men would be accused of not being very “mature” at PS for never having kissed or some other silly “milestone”.
As you know, my son is only a little younger than your daughter (9 in July). I too am glad that he is still a little boy who likes stuffed animals and thinks “rainbow” is the worlds best color. The other day he told me that one of the best things about having me as a mom was that I homeschool. I was kind of surprised and asked him why. He said that he thought he would be picked on a lot at PS and was glad not to have to deal with that. It is sad that acting like a little kid when you are a little kid is cause for ridicule.
Hi Frances – I love that he thinks “rainbow” is the best color … I have never heard anyone pick that color before! Incredibly creative. I am quite certain that Hannah would be picked on merciless at PS (I was and I had no communication challenges). She would be “labeled”, “cubby-holed”, and “set-aside” because she wouldn’t neatly fit in their expected curve. Too bad our kids don’t live in the same neighborhood.
Sorry to comment about something totally off topic about my own (very neglected) blog, but I would really appreciate your feedback on my most recent post about the importance of beliefs. Thanks so much.
Frances recently posted..How important are beliefs
Kids grow up way too fast today. Back when I was nine and in PS I loved playing with dolls, chalk in the driveway, and my guinea pigs. It’s not the same anymore. Sweet Hannah is so lucky to have such a great Mommy. You are the best OneMom. Tell Hannah that the Mayor has some new pictures on his blog. Him and Emma love their friend Hannah! hugs to both of you…..
Hi Cat – I was usually on my pogo stick or stilts when I was 9 or 10. I will send Hannah over to BHT when she comes in from the sandbox.
I have a nephew and a niece that are 9 and the boy plays with water guns and remote control toys. The girl has dolls and barbie’s. That’s being a kid. Seems as tho the “kid” stage is skipped now days. And that’s not good. Being a kid is where you get your imagination. And belive me, you need a big imagination to make it in this world. Hannah is right on target. And don’t let anyone tell you any different.
Thanks Cindy. It seems with her language disorder it causes people to think they have a right to analyze and diagnose everything she does.
Thanks for this blog! I love it. My oldest son is severely speech delayed and my younger son is moderately speech delayed and I am amazed how everyone feels the need to make DIRE forecasts and diagnosis’ about them. They are 4 and 3 repsectively, and they do very much act their age, but because they aren’t in daycare they aren’t as “mature” as other children their age, they are just little boys who love to play pretend and roll around in the dirt! I think it would surprise most people to see our day to day life (which is pretty normal I think despite the language difficulties), but most people only see the boys in public situations where they feel overwhelmed (and therefore anxious) or in evaluation situations (again anxious). My husband was and is a very anxious person socially as well, though as an adult he copes with it much better, but as a small child he struggled with this as well, so its not surprising his children would be prone to a little bit of social anxiety in chaotic or critical scenarios. My oldest son is in a wonderful christian prek program but the local PS system is pressuring me to place him in a specialized program for children with delays. I am not against the program, but I do worry he won’t feel as secure and loved in that environment and will therefore struggle (and be diagnosed with more things wrong with him then actually exist). Your blog really articulates the struggles a lot of us parents of late talkers/developmentally delayed children face. And if I hear the word autism ONE MORE TIME! not every delay or quirk in a child is autism, we need to get over that just a bit. But alas, it does receive the most funding. .. .. . . .
Thanks Christina – I’m glad this post was encouraging to you. Come back any time!
I have a 5 year old daughter who I believe has this language disorder although I am not sure if it is mixed or just expressive. Her receptive language is pretty good – she’s terrible with spontaneous speech and answering open ended questions. Her pronunciation and mixing up of pronouns, etc. makes her sound more like a 3 year old. I found an Episcopal pre-school that is pretty laid back and we did the 3-year old class twice. She fits in a little better with the kids who are a year younger than her. I have her going there next school year but that is where their program ends. I am scared to death about kindergarten because I don’t trust the public schools here (I am in Louisiana) – they will want to label her autistic and put her in a special ed room and I don’t want that. I don’t think the catholic schools will put up with her – she is quite strong willed and sometimes refuses to follow instructions and seems to like challenging authority – her father was the same way as a child. My question is this – how hard is it to get an evaluation done by Dr. Camaratta? How did you go about setting that up?
Contact Mary Camarata at http://latetalkersconsulting.com/contact.php