30 Days with Autism: Day 10

ORIGINALLY POSTED: APRIL 10,2013

April 10th: Autism has taught me the importance of accepting yourself as you are.

There are times when I look at my daughter and how she’s dressed herself for the day and I wish I could be in her head during that particular thought process. I would just love to know exactly what she was thinking when she put that outfit on, and yet, I send her off to school just as she is most days, so long as she’s not in violation of the dress code. Her obsession with leggings and tutu-like skirts may make some people look at her funny, particularly when her color pallet is a bit off, but she’s being who she wants to be, not who I want her to be.

In letting Sissy be herself and define her own style, I have learned that it’s okay to wear what I want so long as I am true to myself and be comfortable. There are days when Sissy isn’t quite comfortable in the outfit she has chosen. Days when, at the age of seven, she worries about what others will think of her outfit. Those are special days in our house because mommy grabs a few things that are crazy and we have a “Crazy Outfit Day”. This means I might wear a bow tie or a dress with a t-shirt and brightly colored leggings. My outfits are always “Sissy Approved” and we make each other confident in what we are wearing.

I’ve always been honest with my daughter regarding her Autism diagnosis. I don’t feel like hiding it is the right way to go. I didn’t know why I was different growing up and it caused me great pains. Years spent hating myself could have been spent getting help and learning how to better adapt to the world. I don’t want these years to be wasted for my daughter. I want her to understand herself, to understand her strengths and challenges and for her to learn how to maneuver through life without the great struggles and heartaches that I have had to go through.

I don’t want her naivety to hurt her the way mine did me. I don’t want her to hate herself because people don’t understand her and she doesn’t understand herself. I want to be the best mom I can be for her. If that means she wears lime green leggings with a blue and purple plaid skirt and pink shirt, then I will let her wear it. She needs to be comfortable with who she is and I want her to define who she is, not someone else.

I want my daughter to have the confidence and self-esteem that I didn’t have growing up. I want to teach her that she is always beautiful so long as she is happy with herself. It doesn’t matter what anyone else thinks of her outfit, her frightful hair, her stimming or anything else. She is a unique individual worth celebrating and so am I. In teaching my daughter to love herself as she is, I am learning to love myself as I am. I never thought being a parent could teach you so much about yourself.

Crazy together and about each other.

Crazy together and about each other.

A crazy outfit to match Sissy's

A crazy outfit to match Sissy’s

Great big frilly skirt courtesy of a friend :)

Great big frilly skirt courtesy of a friend 🙂

Sissy in her "I look just like Junie B." outfit!

Sissy in her “I look just like Junie B.” outfit!

Sissy and Little Brother, best friends for life!

Sissy and Little Brother, best friends for life!

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30 Days with Autism, Day 9

ORIGINALLY POSTED: APRIL 9, 2012

 

April 9th: Autism has taught me the importance of distraction techniques in crisis aversion.

Who knew that song could mean so much to a 4 year old? Or this one (which at the age of 5, she could sing perfectly in time to the karaoke instrumental):

And what mom wouldn’t want their child to have this as a life motto (which was written in response to a critic, Taylor Swift gave an interview saying “there’s constructive criticism, there’s professional criticism, and then there’s just being mean. And there’s a line that you cross when you just start to attack everything about a person.”):

Believe it or not, I’ve used this several times with much success:

“What’s that?” doesn’t work so well with autistic kids. They don’t understand the looking where someone is pointing thing. But sometimes, “Hey, that’s pretty”, works even better!

Music has become a great distraction. I’ve learned that K responds quite well to music and it helps to soothe her, particularly if it’s a song she knows the lyrics too (like mother, like daughter). It quiets her mind and gives her senses something else to focus on. It’s easier for her to regain control of herself and allows the negative stimuli to be forgotten.
Another great distraction we’ve discovered is PT. Physical Training, as it’s known in the Army, has become a great distraction for our kids. When K gets too much going on inside of her, she tends to become very active. She flails more often, becomes louder and more disruptive to the people around us. This nearly always happens when we are talking with a store employee or are trying to check out. My personal belief is that standing still for so long causes other stimuli to get through. Things she wouldn’t hear, see, smell, touch if we were moving around the store become stationary and she goes into overload. She enjoys being active and loves to be a “superhero” like daddy, so PT becomes fun. People laugh and smile as she does jumping jacks, push-ups, sit-ups, toe touches, you name it, in the middle of the store. Letting her be active in a controlled way often times helps to combat the coming hyperactivity and allows us to get out of the store with minimal negative interference from other people.

If my child is going to have a tantrum, I’m going to go into crisis management mode. I’m convinced life experience should count for degree credit in this area. Who needs hostage negotiators when you’ve got moms of children with autism? Our battle armor is half-done, smearing mascara and our sword is a great distraction. We will slay the fiercest “dragon”, in the middle of a crowded mall, surrounded by useless people who think “dragon” slaying is a spectators sport. (Hey there’s a thought, charge people to give rude comments and stare. At least then we could afford Occupational Therapy AND groceries, right?) It’s not easy when you know it’s coming. The signs are there, that little finger flick getting more prominent, scratching the head a little more often, hands are covering the ears for longer periods of time, whatever the signs for your child, you can see the signs long before the meltdown actually takes place and with proper distractions, you may be able to successfully navigate the next 30 minutes without a major fiasco.

What distractions do you use to avoid fits and keep things running smoothly?

30 days with Autism, Day 8

ORIGINALLY POSTED: APRIL 8, 2012

 

April 8th: Autism has taught me to say what I mean and mean what I say.

For the record, I’m 27 years old. My driver’s license says so. My birthday certificate says so. And everyone present at my birth would attest to the claim. I am in fact, 27 years old. If you ask K how old I am she will tell you, “24”. Only my next birthday, she’ll tell I am turning 26. Though she has the concept of birthdays down with an efficient accuracy, I made a joke several months ago about only being 24 year old. Thus, I became 24 in the eyes of my daughter. When you have a child with autism, you have to be cautious with what you say and how you mean it. Just this evening, K asked for some french fries  at dinner, to which I replied, “No, because you haven’t even touched your sandwich.” This simple statement brought on the physical response on her reaching her hand out and touching the top bun on her sandwich. Any other child, and that would seem like a snide, sarcastic, or rude thing to do, but for K, it seemed the logical action to follow the statement I had made about her not having touched her dinner. Of course, she had touched the sandwich. In fact, she had removed the cheese from the bun and set it on the plate next to the two half buns. She had eaten the half banana on her plate, and had picked several sesame seeds off of the lower half of the sesame seed bun her dad had bought for the hamburgers he grilled. She had been touching her food, she just wasn’t eating it. She did, eventually, get french fries, but only after removing the sesame seeds from the lower bun and eating only that. No cheese, no top bun. Half a banana and a mutilated hamburger bun. The point to this story is that what I said wasn’t what I meant, but with kids like K, what I say is exactly what I mean, even if it’s not. Autism has taught me that meaning is not always clear and communication has to include both a clear speaker and a patient listener.

30 Days with Autism, Day 7

ORIGINALLY POSTED: APRIL 7, 2012

April 7th: Autism has taught me to celebrate the small steps and push on through the larger setbacks.

If you had told me that learning to play in the dirt could be so difficult, I never would have believed you. But it’s quite difficult for a child with tactile defensiveness. Tactile Defensiveness is an issue within the brain that keeps a person from being able to handle certain textures. For K, if her hands were perceived to be dirty, she had to wash them immediately; regardless of what we were doing at the time or even if the dirt was actually there or not. Several times before the age of two, she scraped up the backs of her wrists in an effort to keep her hands from becoming dirty when she fell on the driveway. She hated having crumbs on her hands, hated dirt with a passion, and once begged me, in the middle of Target, to wash her arm after discovering her first freckle. She was so convinced her arm was dirty, she became visibly upset and we had to leave the store. We tried

Note the awkward angle of her wrists. This was a common way for her to touch the floor until well after the age of three.

The first time she willingly played in the sand at the beach (or anywhere), she was 3 1/2 years old at the time.

desperately to work with her. For months, we would take her outside and try to get her to “get dirty”. After a long time, we got her to hold the dirt in her hands without having a fit. Shortly after that she developed a habit of “watering” the bushes with dirt. She would pick up a handful of dirt and immediately drop it into the bush next to her. Then she would do it again. This became a fun game for us and got her slowly more comfortable with being messy. A few weeks later it snowed. Eleven inches of snow in twenty-three hours. But that brought new problems. She wouldn’t touch the snow. We had worked for so long to get her to touch the dirt and now she won’t touch snow. It was heartbreaking to watch her playing outside, all bundled up, loving when she got hit with a snowball, but unable to hold one in her pink-gloved hands. Pushing through is all you can do when you hit a setback like that. After the snow melted and it got warm again, she was back to not touching the dirt. We had to start over from square one. After several years of us working with her and the Occupational Therapy she received at school last year, she’s doing much better and just last night she was “digging for treasure” with several other kids at our FRG BBQ. She had a blast. It was great to see her being a “normal” kid.

For kids like K, things can be much more difficult than they would normally be. Simple things like trying new foods can be hour’s long ordeals. Hair brushing has you in fear that the neighbors thinking you’re abusing your children. But sometimes, it’s the little victories that can mean the most. Sometimes, it’s the baby steps that are the bigger picture. For instance, eating peanut butter sandwiches, one would think it would a simple thing for any child to do. One would be wrong. When K first started to eat peanut butter sandwiches, things didn’t always go so well. She had a habit (in the beginning) of removing the bread and eating the peanut butter with her fingers first, then eating the bread one slice at a time. It was a small victory the day she stopped doing this, and was only after I got creative with how I cut the sandwich. Keeping it fun, I asked things like, “Do you want rectangles, triangles or squares?”, “Do you want 2, 4, 6, or 8?”. Did you know it is possible to cut a standard size sandwich into 8 triangles that still looks like triangles? It is. I do it often. It was only by cutting these sandwiches into such tiny pieces that she started eating them as sandwiches. It was nearly impossible to eat it in her preferred method of taking it apart and eating it piece by piece.  It was a small victory, but a great one. She still won’t put jelly on her peanut butter sandwiches, as it’s sticky and can’t be separated from the peanut butter, but just being able to take her out and have her eat a sandwich without destroying it, is a great gift. It’s hard to describe the feeling you get when your child does something for the first time, something other kids have been doing for months or even years. It’s indescribable, but I’m so glad I get to experience that with her.

Not that I don’t love this smile, but I’m glad she doesn’t still eat peanut butter with her finger tips. These days, we give her a spoon =)

30 Days with Autism, Day 6

ORIGINALLY POSTED: APRIL 6, 2012

 

(Writer’s note: I’ve been sitting on this one all week because I wanted to put pictures with it. It made more sense since I know I have pictures of her lined up toys and pictures of the cake WE put on her nose at her first birthday party. It ended up looking like a little pink icing rose on the tip of her nose. Oh well, I haven’t found them, but maybe when I do I’ll upload them as an amendment to this entry. Here’s day 6, sorry my OCD got the better of me for so long. :} )

April 6th: Autism has taught me to trust my instincts as a mother.

When K was an infant, she was an easy baby. She took her bottles, liked to have her diaper changed, and was content just to sit and look around the room. She also had to take her formula cold, her bottled breast milk warm, her diaper wasn’t ever allowed to have a drop of anything in it before she would through a fit and she hated to be held or cuddled. This was how our journey with autism started. At weeks old, she didn’t make eye contact the way normal newborns do. She never looked at my face while she was nursing and her bottles had to be prepared a certain way. Warming the formula meant she wouldn’t take the bottle. Not warming the bottled breast milk meant the same. She was very picky in that sense much to the amusement of some and the frustration of a new mom struggling to bond with her baby. As she got big enough for solid foods, she would first eat nearly anything. Mushed chicken baby food, most fruits and vegetables and loved sweet potatoes. Then things slowly started to change. She wouldn’t eat the meats anymore. Not one of them! Then she would only eat foods that were orange. I would mix the green beans, peas, and chicken into sweet potatoes, peaches and corn in an attempt to make sure she was getting the nutrients she needed. After a few weeks, she wouldn’t eat anything unless it was green, so I took to mixing the sweet potatoes she once loved, along with corn, peaches, and most other foods, into the peas (which had become a favorite suddenly), green beans and mixed vegetables baby foods. After a while, it was a fight to get her to eat much at all.

Her first birthday came around and she picked the sprinkles off her cake one at a time, carefully avoiding getting icing on her hands. It was kinda cute, but I was still waiting for my baby to act like the other babies. Before I was married, I was studying to be an elementary school teacher. I had taken dozens of classes in high school on child development as part of the pre-teacher licensing and to get into the education program at the local college. I knew how children were supposed to grow. I knew how babies were supposed to behave and which milestones they were supposed to hit. K just wasn’t hitting them. Physically, there was nothing wrong with her. She walked before she learned to crawl and was running just a few months after her first birthday. But she wasn’t talking, had a “you can go mom” attitude when it came to Sunday school, and was highly uncooperative at meal times. By 18 months, she still wasn’t talking and wasn’t making gestures to communicate needs or desires. She still mostly preferred to be left alone and some things became OCD-like. On one occasion, we were playing together in her room. She had found a ball under the changing table and she carried it around most of the day. At bedtime, hours later, we were picking up the toys. She found the same ball, this time lying next to the toy box. She picked it up and looked at it. I told her to “put it away” thinking she would simply place it in the toy box. She was standing right next to it, it was logical for her to just place it in and move on. Only… She didn’t. She walked across the room and got low to the floor and put the ball back under the changing table where she had picked it up that morning. She would line her puzzle pieces up across the floor and leave them there. If any of us moved them, she would become anxious and aggressive. The fits she had when we moved them caused us to only pick them up when she was napping or after bedtime.

We brought it up with her doctor many times. When she wasn’t talking at one, “all kids are different”. When she wasn’t talking at 2, “She may just be a late talker”. When she wasn’t talking at 3, they checked her hearing and sent us on our way. She was three and a half when we had her evaluated by a speech pathologist at the local elementary school. Using mostly flash cards and “what sound does this letter make?” type questions, she got a score of 37. A score of 40 would have qualified her for speech therapy.

I should have trusted my instincts, I should have pressed harder, I should have advocated for my baby girl. I didn’t know any better and literally everyone was telling us “she’d grow out of it”. When she was two, I reconnected with a friend from high school. Mel also had a two year old; his name is “T”. When T was about 30 months old, when K was 24 months old, T was diagnosed with autism. At that point, I started to ask Mel about things he did or didn’t do. I was concerned, but couldn’t bring myself to use the word “autism” when it came to talking with the doctors. It wasn’t that I was afraid of the diagnosis. I could clearly see something wasn’t right, I think it was more of ignorance. I didn’t really know what autism was. I had never heard the word before. I didn’t know what that would mean for K, both now and in the future. I desperately wanted to believe what everyone said… That she would, someday, grow out of it. She never did. She was nearly four when she started to talk sentences, but even those were fragmented and mumbled, the way a baby talks when they first start using words. In the past two years, her speech has taken off, but when she’s anxious or upset, she still loses the ability to communicate effectively. Things come out in the wrong order or the words just don’t make sense, as if her brain is fighting to make her mouth speak faster and her mouth is skipping over certain words to keep up.

LJ had his first evaluation last fall. A score of 16 was the cut off in three areas… He scored 17 in all of them. He toe walks to the point of wearing out his shoes. His speech is delayed and at times, his eye contact is awkward. At two, we are seeing a few signs that K exhibited at his age. I will fight for his right to early intervention. I will push, argue and go “to the mattresses” for him. His sister taught me how. I don’t know if I failed her. Sometimes I feel like I have. I feel like I should have known sooner. I should have pushed harder. I should have been louder, more firm. I should not have accepted “she’ll grow out of it”, but I’m also learning from my mistakes. She’s receiving the help she needs now, at age 6, and she’s thriving. She is a joy to her teachers, a helper to her friends, and loves everybody. Because of her, her brother will get help much earlier than she did. She has taught me what it means to advocate for one’s child, something no parenting book or website could ever teach.

K and LJ, best friends for life!

30 Days with Autism, Day 5

ORIGINALLY POSTED: APRIL 5, 2012

April 5th: Autism has taught me that hair brushing should be an Olympic event.

Anyone who has ever witnessed the act of brushing the hair of a small child knows it can be fraught with challenges. Being sure not to pull to hard, while being able to get the tangles out, is a fine balancing act to attempt. Now imagine that your child has an extreme aversion to things being on or near her head. Imagine the slightest pull feeling the same as if you had grabbed a large tuft of hair and jerked. This is what it’s like at our house every day, sometimes more than once a day. There are times when holding her down and forcing the brush through her hair is literally the only way to get the job done. I have tried many things to make it easier for her. Sometimes she’s willing to try and other times she’s not. I’ve had to sit on the couch with one leg crossed over the opposite knee with her standing in the middle of the triangle they form just to keep her from running away from me the second I pick up the brush. It’s exhausting! She squirms and wiggles, she cries and fights, she runs off and screams. She does not like to have her hair brushed. She has also had an exceptionally sensitive head when it comes to pain. She can hit her arm on a bed, leaving a huge, raised welt and not make a peep, but brush her hair and you’d think we were scalping her. The fear and the panic in her eyes are very real. It’s the same fear and panic I see when we wash her hair in the shower, or try to dry her hair after a bath. It has gotten somewhat easier over the years to do this, but it’s still a minor miracle if she lets me brush her hair without a major fuss. We sometimes have screaming and fussing, we always have tears. The slightest pull is excruciating, and she lets us know it. The light at the end of this part of the autism tunnel is the smile on her face, the pure joy and bliss when she sees herself, hair combed to perfection and delicately adorned with a butterfly or flowered hair clip. She’s beautiful. She’s always beautiful, but seeing the look on her face tells me she knows it. She feels it, and that’s what’s important. I may be tired and a bit frustrated. I may have to expend much more energy than I’d like for something so simple, but she feels good about herself afterwards. That’s what it’s about.

30 Days with Autism, Day 4

ORIGINALLY POSTED: APRIL 4, 2012

April 4th: Autism has taught me the importance of making a schedule and the need to stick to it.

My daughter has grown to be slightly more flexible in the past year or so. That said, their is a real importance to maintain a schedule when you have a child with autism. Most kids thrive on routine, but when you have a child with autism a slight variation of the plan can cause horrendous meltdowns. For K, she does really well at school. The routine is pretty rigid at school and is posted on the wall for her to reference throughout the day. Since she learned to tell time, last summer, it has become easier for her to follow a schedule and set allotments of time for her to complete activities at home. The problems arise with school breaks. Most states have Spring Break, but here in Tennessee, we also have a Fall Break. A useless week in mid-October where the kids don’t have to go to school. Since the first few days of either break are a weekend anyway, those aren’t the problem. Monday morning rolls around and the gates of Hell may as well have swallowed my living room. Monday is a school day, thus requiring K to go to school. She doesn’t understand why there is no school, this creates anxiety and fear which in turn leads to tantrums and meltdowns. Her being home has consequences most people would never understand. Her being home sends my sons schedule into chaos, and their tantrums feed one another. It’s complete anarchy around here. It has gotten easier as I have learned to adapt our home programs to fit a schedule when she’s home and unable to go to school. For instance, Spring Break 2011, I took her and LJ (my son) to activities around Ft Lee (where we were then stationed). We went to crafts at the Library, playgroups at the ASYMCA, and a story hour and craft at the Memorial Chapel. She had a good time, and it create a pseudo-schedule for her to follow. This allowed her anxiety to subside a bit and allow her to have fun. Another problem arises shortly after the restoration of the schedule. Usually for the week the schedule is messed up, and the first week back on a routine, she’s a hot mess. Her anxiety levels are high, her body is tense, and she’s often much easier to upset. Her brother knows all the little things that upset her and because he’s in a mood from his schedule being off, he uses them and with much frequency. He can be the typical little brother through and through.

We use a supplemental homeschool approach at our house. K does go to a public elementary school were at 4 she started Kindergarten a whole year early. However, when we PCS’d (Army move) last year it was an interesting transition. She went from half day Kindergarten in California, to full day Kindergarten in Virginia. She did well with that transition. The problem was the education system. We already had more than a dozen workbooks ranging from pre-K through second grade that we used to teach K anything she wants to learn. When we moved to Virginia, we had to start supplementing the work she was receiving from her school. The teachers didn’t know what a 4 year old would be capable of, and didn’t even try to find out. She was already reading chapter books with me and my husband at home. She was doing simple addition and subtraction at home, but for homework, she was bringing home connect-the-dot worksheets that only went to the number 8. So I bought more workbooks. We would do the menial assignments she was given by her teachers, and then we would pick a book, math, science, geography, language, whatever she wanted to learn that afternoon, and we would work. This past summer, in an effort to keep her on a schedule as we moved (yet again), I asked her what she wanted to learn over the summer. My daughter, who had just turned 5, wanted to learn to tell time and count money. We used this to set up schedules and routines through the summer and by the start of the first grade she could both tell time and count money. We continue to supplement her homework with workbooks on the weekend to maintain a schedule for her. We’ve had to establish meal schedules for the weekends because at school she eats lunch at 11:36am, and we’ve had big problems with this on the weekends when we typically eat a slightly later breakfast. 12:36pm. That was the compromise, and believe me when I tell you, she watches the clock like a hawk watches a field mouse. At 7:00pm, every day we must be at home and getting ready for bed. She cries “Oh I’ll never see my bed again.” repeatedly if we aren’t home yet. Sometimes we are able to keep her from knowing the time and are able to fudge fifteen minutes here or there to keep her from having a time related meltdown, but not always, especially not when she’s wearing one of her watches. (She has two or three, along with the 12 clocks she has in her room. She’s a big fan of time.)

Making schedules may seem easy but it’s not always possible to keep to them, especially with two kids and a husband in the Army. It’s up to me to make sure everyone is as comfortable as they can be. We are teaching her flexibility in small doses. She prefers to go to certain stores at the mall and in a certain order. By not doing this every time we go, we are slowly teaching that things can be done in other orders and don’t have to be done the same way every time. There are some things in this world, you never thought you’d have to teach and others you have to learn to teach as much as they have to learn the concept.