What I Didn’t Know Until After My Daughter’s Autism Diagnosis

And So It Begins…

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When my daughter was born she seemed like a normal baby. Born at 39 weeks, she came screaming into the world at 6 lbs 10 oz and 19 in. She was healthy except for a bit of reflux which all of our kids had issues with. Growing at a steady rate and almost always happy unless she was hungry, tired, or had a dirty diaper, she was a great baby. The only thing I noticed was that she started to get behind hitting milestones very early on. I never thought that we would be facing something as difficult as a diagnosis of Autism (visit here for more information).

Concerns

Being a mother of 4 at this point I didn’t think much about it because all kids do everything at their own pace and as long as she wasn’t extremely far behind it wasn’t much to worry about. Until it was time to worry. She started getting extremely far behind, like I’m talking 5+ months behind on pretty much everything. Every visit to the pediatrician I voiced my concerns and every time was met with the same answers, there was nothing wrong and she would catch up. Finally at her 1 year check-up the doctor agreed that maybe there was something wrong since she was nearly 9 months behind in some areas. That’s when we were referred to a children’s neurologist, and also when we changed pediatricians.

Finally Some Answers

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Three months later we were waiting in the neurology waiting room, my daughter scared and anxious because it was a new place with a lot of people and noise, and myself stressing to the point of almost being sick. The doctor confirmed that yes she was drastically behind and that it did signify a problem. The initial diagnosis was non-specific developmental delay and sensory processing disorder (SPD). After some testing and another visit our official diagnosis was mild Autism (ASD) and SPD.

Relief and Worry

I was relieved to have a name to what was going on with her but worried beyond belief as to what this would mean for her and her life. Soon after she started therapy and started growing by leaps and bounds when our 2nd therapist through Missouri First Steps started coming to our house weekly. Every week she was learning and doing new things and amazing us all. Soon she was caught up on most of her milestones and worked amazingly hard towards the ones that she hadn’t reached yet.

She’s Amazing

During all of this over the period of 3 years, this amazingly wonderful little girl has taught me so much. She has taught me more than I could even imagine. And though we still have our struggles and some issues, she has become such a smart and hardworking little girl. It just boggles my mind that she really has come this far.

My Daughter

Before my daughter was diagnosed with ASD I honestly can’t remember knowing anyone personally with that diagnosis. I didn’t know much about it other than the stereotypical things that people who have never met an autistic person think. Those stereotypes are so wrong.

What She Has Taught Me So Far

There was so much I didn’t know before meeting my daughter with Autism…

…socks are annoying.

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A lot of kids don’t like socks. But when you’re autistic even the smallest things like strings, tags on your clothes, or even the texture of materials can send your senses into overload. I can barely keep socks (or shoes for that matter) on my daughter even when we are out in public. It’s a struggle but I choose my battles with her. If we’re in public and she needs the socks and shoes off then they come off, her feet can be washed and it’s not worth making her have a meltdown over.

…”head banging” can have more than one meaning.

Before my daughter could talk she would frequently get frustrated or upset because she couldn’t express what was going on, what was wrong, or what she needed. So it was a common thing for her to head bang, meaning she would bang her head into almost anything she could…doors, walls, appliances, the floor, and even me. It was her only way of getting the frustration out.

…anger is a common thing.

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Autism is overwhelming not only for the person with the diagnosis but also all those around them. Anger is pretty much a daily thing in our lives. My daughter can communicate pretty well with us at this point but sometimes things just get so overwhelming or she gets overstimulated and that causes her to shut down and not be able to express herself. This leads to anger and fits of screaming and crying uncontrollably along with hitting, pinching, kicking, and throwing things. It’s something that just has to be taken day by day when it comes along.

…she gets “frusterrated” a lot.

My daughter is 4 now and has a very good vocabulary. Of course like most kids her age she has difficulties with some sounds and because she had speech issues early on she is a little farther behind than other kids her age. She often tries to imitate words that she hears people say and generally she uses them in context very well. One of her favorite words is “frusterrated” and despite being only 4 she actually knows what it means. She often tells me she’s “frusterrated” when she’s unable to express herself.

…I’d never seen a true “ugly cry” until hers.

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Almost everyone has an “ugly cry”. You know the one where you look just absolutely horrible while sobbing. Well, nobody has an “ugly cry” like my daughter. She’s pretty much got it perfected especially since we cry multiple times a day. She’s also got the crocodile tears down pretty good too when she’s trying to get her way about something.

…breakfast can be (and most often is) anything she wants including ice cream or candy.

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Many autistic individuals have taste and texture issues which causes them to be pretty picky eaters. Thankfully my daughter really isn’t too picky. I mean, what 4-year-old do you know that actually asks to have salad with their dinner? She’ll eat almost anything I give her, or at least try a bite to see if she likes it even if it looks disgusting.

But there are those days when she wakes up and I just know it’s going to be one of those days where we have lots of meltdowns and she’s going to be super emotional. Those are the days that I just let her do whatever she wants. If she asks for chocolate ice cream or a sucker for breakfast on those days then that’s what she’s going to get. I’d rather let her have a little junk every once in a while if it will help her stay more calm and avoid any extra meltdowns.

…eating with your hands is almost always a necessity no matter what food you are eating (including rice, which is eaten a single grain at a time).

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Since my daughter was so far behind with her milestones it took her a long time to actually start eating solids, she was about 15 months when she ate her first solid food, and it took her even longer to be able to start using utensils. Because of this she ate with her hands as a baby a lot. That has now rolled over into her toddler/preschool years. She often asks for both a fork and a spoon at dinner but gets frustrated when she’s not able to use them like she wants to. So she just gives up on them and uses her hands. It gets quite a bit messy but as long as she’s eating I don’t mind.

…getting messy and changing clothes multiple times a day is a way of life.

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Since her eating habits are a little unorthodox she does get quite messy. And this often causes her to have to change clothes after every time she eats something. She’s getting better but it’s still a daily norm to change her clothes at least 3 times. She also has to change clothes throughout the day because something about her outfit is bothering her. It’s dirty (even though it is’t), it’s too X color, it’s too itchy, it’s too soft, on and on. So instead of causing a meltdown I just let her change her clothes and of course she always has to pick out what she wants to wear.

…crashing, running, and jumping feel good to her.

She seeks out certain stimuli. Crashing into things like walls, the couch, or me is very common. She loves to run and spin in circles, rarely getting dizzy. And jumping is almost a necessity for her. All of these things feed into her sensory needs. Her mind and body need these certain feelings to be able to regulate.

…things are generally “fancasket”.

Another one of my absolute favorite words that she uses all the time is “fancasket”. She loves to tell me that she feels “fancasket” or her toys are “fancasket” or that lunch was “fancasket”. It’s probably one of the cutest things ever. She uses it in context very well. Her autism has an aspect of repetition so this is one of those things that she repeatedly says, generally it’s 5 or more times in a row before she can stop herself.

…life shouldn’t be taken so seriously.

My daughter is amazing. She has taught me that you need to laugh and play and have fun in life. Things shouldn’t be so serious all of the time. She makes me take the time to play dress up, pretend play, tell silly jokes, and make up funny songs. Her outlook on life is one of constant fun and happiness despite all of her difficulties and struggles.

Meeting My Daughter With Autism

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Before my daughter’s Autism diagnosis I never knew how tough yet amazingly wonderful life could be. Sure, I had been through plenty of my own struggles but this little girl was put through the ringer and at such a young age. Despite all of her difficulties she has come out on top and is always smiling and happy. She has shown me to look at the good in everything and how to love more than I have ever been able to. Autism can be a scary diagnosis but my daughter has shown me that it doesn’t have to be.

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5 comments

  1. Very detailed post. Though I have no kids of my own yet, this is very helpful information and the experience shared also helps what to do in situations suc as the one you shared. Great post

  2. My friend has a son in the same school as my son’s. Her son has autism and she chose to get him in common school, not specifically for kids with special needs. You know, he can get along with their friends and the academic schedules. He is also good in playing drums and participates in school’s talent events. What we should do is pray much and always have positive thinking upon it. God never sleeps..

  3. I think as humans we come in all sorts of different shapes, sizes and abilities. All of us have our strengths and weaknesses to some extent. I too think socks are annoying (I’m sitting here barefoot). 🙂

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