Progress

It is always a blessing to see progress in your children. To see them learn a new skill that you helped them achieve after working so hard. This is even more so true with children on the autism spectrum. Because I have no idea how far Julianna will go or what she will be able to accomplish, I just have to assume that she can do everything. If I don't, I could be depriving her of something that will help her to reach her potential. She won't reach milestones at the same time as other kids, but that's okay. So far as I have raised her, I have always been guided to know when the right time is for certain milestones. And recently, she has accomplished a HUGE one that we have been working on for YEARS, and I could not be happier. Something that other moms probably don't have to teach their kids because they learn on their own by watching and observing, but for Julianna, it took LOTS of practice: taking a shower.

As you might already know from reading my blog, Julianna does not like water. She'll tolerate a bath, but when it came to pouring a cup of water over her head, she would plug her ears and close her eyes really tight, and I would have to make sure I didn't get any water on her face, especially in her eyes, because it really bothers her. Sensory issues are real! Every once in a while, I would force her to take a shower, because it's pretty much a life skill. And when I say force, I mean it. She would go in kicking and screaming, and when it came time for me to wash her hair, it always became a fight. She would be screaming, and I would be getting wet because I'd be halfway in the shower with her, and it would always be a very unpleasant experience for both of us. But I knew that we had to keep trying.

One day last fall, it occurred to me that her hair was making it very difficult to learn this shower thing, so I decided to bring her in for a haircut, and we cut it VERY short. I knew this would be the only way to help her learn to scrub her hair and get it all clean. After that, we kept trying showers at least once a week, but no progress was made at all. I was getting frustrated, and wasn't sure what to do.

In February of this year, the supervisor from her ABA therapy provider was here for a visit. She asked me if there were any new goals that we needed to start working on. I had never mentioned showering before because I assumed they couldn't help her do that. But I brought it up anyway, and said I really want to help her learn this skill, once and for all. So she and I brainstormed, and she said she would write a social story about the steps of taking a shower, and incorporate her favorite characters in the story (My Little Pony/Equestria Girls at the moment.) She would have her therapist read it at the beginning of every session and then talk about the importance of learning to shower. I thought it was a good idea, but really didn't think it would work, but at this point, I was willing to try anything. I've used social stories with her in the past to help learn other life skills, and they are helpful, but not always successful. Usually the little social stories just end up being books that Julianna liked to look at because her characters were in them!

Well, soon after her therapist starting reading the story to Julianna, Julianna asked me if she could start taking showers again. I of course agreed, and in the beginning would try to help her with the hair washing part. After just a few weeks of showers, I knew she was ready to try on her own. I told her she could print out two My Little Pony pictures if she did it all by herself. Between the social story and this reward system, it was enough to get her to do it. And ever since then, she has been able to shower all by herself! There are times she still has a little soap on her hair, and about once a week I go in there and really scrub her hair just to be sure, but she is doing all the steps by herself! This life skill can be checked off the list! The only problem we have currently is she likes to take LONG showers. So I have a kitchen timer in the bathroom and when it rings, she knows she has to start washing off. Success!!

I just love seeing progress. To see Julianna reach a huge milestone is so rewarding. It means that she really can do anything, just on her own time table. And it means I will never stop believing in what she can do. She will get to where she is supposed to be, and I am glad I can help her along the way.

Julianna's first two softball games

After having about 4 practices, we were told last Monday by her coach that her first game would be two days later. When I told Julianna about it, she was surprised, and I asked, "How do you feel?" She said, "Nervous." There wasn't enough time to hold another practice before the first game so we got there this past Wednesday, and it all hit me, really hard. This is happening. She is going to play in a softball game. What am I doing? Why am I doing this again?

The day before the game I texted the coach to find out if she would still receive help from the assistant coach like she had been getting during practices. We hadn't even discussed what would happen during the games! So he talked to the higher ups and they agreed to let the assistant coach shadow her. I felt better. Julianna felt better, too.

As the team warmed up before the game, I began to feel those tears welling up, but I kept pushing them back. I am not going to cry. Everything is okay! Joel was coming straight there from work so I had Blake and Nathan with me. I watched as the other girls threw the ball to each other, throwing so fast and far, and watched Julianna throw just 10 feet away to her coach. Of course this made me doubt again why I was doing this at all. She's doing her best, I kept telling myself. I wished I could find a way to build her confidence, to help her feel like she could do anything the other girls could. For some reason she doesn't think she can, and this causes the coaches to want to help her even more. But I know for a fact that she is capable of doing it, and I just hope that by the middle to end of this season, she will be able to do everything on her own.

Right before the game started, all the coaches and umpires gathered up to discuss the game. I could overhear the assistant coach telling the umpire that they had a special needs child on their team and she would need extra help. The umpire and other coach agreed to this without hesitation. I could feel the tears welling up again as I listened. I'm not going to cry!

Her team was up to bat first, but the first three batters struck out, so they went quickly to outfield where Julianna played centerfield and was shadowed by her coach. Around this time, I was greeted by the head of the softball division of our local rec center, the same man I had to reason with almost 2 months ago at registration. He asked me how everything was going so far. I told him I loved the coach and so far she was doing okay. He was happy to hear it. Soon after that, Joel got there, and I told him I kept feeling like I wanted to cry. Of course, right after I said that, I lost it completely, and had to walk away for a minute to gain my composure. I couldn't really pinpoint why I had to cry, but the tears kept coming. I have never done anything like this for Julianna. I have always been afraid to, and here I was, facing my biggest fear for her: participating in a real team sport. It took me about 5 minutes before I could come back to the field and watch again. A ball was hit to her in centerfield, and she ran to get it, and threw it to 2nd base! She did it, with her assistant coach's help. But she made a play.  I was starting to feel a little better.

The next inning, Julianna was able to go up to bat. Her assistant coach made sure she stood in the right place and held the bat right. Her coach impulsively decided that he wanted to pitch to Julianna, and the other team was okay with this. He even said, I'm going to give her 5 pitches. Again, no complaints from anyone. She didn't hit the ball her first time.
 
The rest of the innings nothing really happened. At the end of the game, the coach picks two players of the game to hand out. Julianna was one of them. She was so excited, and also could not wait to get her team snack for the first time! She has been jealous of Blake getting these for years! We were proud of her, and I was happy they gave her the award the first game, so she wouldn't keep asking when she would get it! Also, at the game, there was a girl around Julianna's age playing with some other kids and she had Down syndrome. I wasn't sure who her parents were, but I knew I needed to meet them!

Saturday morning she had another game, and during warmups they practiced batting. She was able to hit the ball a couple of times! I told myself this time it would be easier, and I wouldn't have to cry. Once again, I heard our coaches tell the others about Julianna's special needs. And again, no disagreements. I am glad that so far, everyone is so open about it.

Julianna's team was up to bat first, and this time she got to hit during the first inning. It seemed like everyone at the game was sitting in silence, waiting to see if she would hit the ball. On the 5th pitch from her coach, she hit the ball, and her assistant coach grabbed her hand and ran to first, and then to second. The tears came immediately. That was my girl, in a real softball game, and she just hit the ball all by herself. In another inning, she hit the ball on the 2nd pitch, but it ended up being a foul ball, and she didn't hit any more after that, so she went back to the dugout.

During this game, I got to meet the mom of the girl with Down syndrome, and we had a nice talk. She told me she also cried when Julianna hit the ball, and noticed how quiet it got when she was up to bat. I feel blessed to know another mom who can somewhat relate to my situation, and look forward to getting to know her and her daughter better.

I am so proud of Julianna for doing something so brave. I know she is still nervous, but she is doing it. And as for me, I don't know how long it will take for me to get past the tears. Maybe I never will. Doing this is also brave for me, because I have never put her so far out there, in front of people. I had no idea what an emotional experience this would be for me. And I don't know what the future games will bring. Her assistant coach said not every team will be as agreeable, so there might be times where Julianna will have to do everything on her own. But this is what I want her to do anyway. I know she will get there. It's going to be a learning experience for everyone involved. I just feel grateful that people are compassionate enough to want to help her succeed, because she deserves it!

Guest Post for World Autism Day: Parkyr

To celebrate World Autism Day, I asked a new friend of mine, Megan, to share the story of her son Parkyr, who has autism. I admire her positive outlook and strength while raising her three boys. You will learn a lot from her honest, genuine words about her son, and how she feels about being his mother.

What has your experience been like trying to have children? And how was your pregnancy?

I have always loved children, so naturally after I got married I wanted to immediately become pregnant and begin my family. Over the next 3 years following the wedding, minus the first 7 months my husband was deployed in Iraq, it was a very devastating and discouraging time. I had a total of 7 miscarriages. I felt as though becoming a mom was just not going to be in the cards for us.

On December 22, 2008 (I remember the day because it was the same day a friend had given birth to a precious baby boy), I took a home pregnancy test…and it was positive! I was excited, and scared all at the same time. I tried to stay positive, but with my previous miscarriages this was difficult. So I went through the motions, went to the appointments, and although there were a few scares, our baby continued to grow and thrive. I was hospitalized a total of 6 times due to preterm labor, and I had spotting throughout my entire pregnancy and was put on strict bed rest. The last trimester I had to take a trip to the hospital every week to have a stress test performed on the baby. The last 2 weeks up until I gave birth I had to go in 2 times a week!

On August 26, 2009 (officially made it to 38 weeks), I gave birth to my 1^st son, Parkyr. After he was delivered I waited to hear that “cry” everyone expects to hear that reassures you your baby is healthy. They laid him on my belly while they wiped him down and cleared his airway with the suction. As I watched, in awe at this beautiful human being that I had just brought into this world, my stomach dropped. My baby’s color wasn’t “normal;” he started to turn a blueish color. The nurses were wiping him down but no one seemed to realize that my baby was turning blue. I finally yelled out to them that something was wrong. They stopped wiping, looked at him, and then in a blink of an eye they scooped him off my belly and put him into the baby bassinet and quickly left the room. I practically yelled at my husband to follow them. I sat in the delivery room for nearly 4 hours before I saw anyone or heard any news of how my baby was doing. Turned out he swallowed some meconium, was put on oxygen for about 2 hours, and had to get a chest xray, which came back clear. He was fine after that and we both went home the next morning.

What was Parkyr like as a baby?

Parkyr was a very independent baby and never wanted to be held (he would get really fussy if you held him for more than 20 minutes). He slept through the night from day one. He always did his own thing and would always want me to be near him so that he could see me, but he never demanded the one-on-one attention that most babies do. When he was tired he wanted to be laid down, not held. I would literally poke at him while he was sleeping after an hour or two so that I had an “excuse” to pick him up; all I wanted to do was snuggle and love on him, but he just wanted his independence. It wasn’t just with me, it was with everyone, but of course I took it very personally and felt as though he didn’t “like” me.

Parkyr was delayed in most of his milestones. Sitting up didn’t happen until he was about 8 months—we always joked that it was because he had “daddy’s big head” and it took a little longer to gain the muscle mass to support such a large dome. Parkyr was also a dare devil; he had no fear or feelings of limitations, so when he became mobile, let’s just say “Mommy had to start dying her hair more often to hide the grey!” He has always had a VERY high pain tolerance…what kid (or adult for that matter) could break his leg, cry for about 5 minutes, and then be smiling and happy as can be after that? That would be Parkyr, climbing on a coffee table and stepping off of it, landing with all his weight on his foot, resulting in a hairline fracture of his tibia just above his ankle.

He had many ways that he would take out his frustration or anger. He would sit down and fling his head straight back, or bang his head on the wall, or get on all fours and bang his forehead into the ground, or fist up his hand and punch the side of his head. Since day one, Parkyr has always done things “Parkyr’s way,” and when he did something out of the norm we always just chalked it up to that. Being on the spectrum honestly never even crossed my mind.

What was Parkyr like in his toddler/preschool years?

As Parkyr got older, his personality just blossomed. He loved going to the park, and immediately would find just one kid to shadow and play with. Although, looking back now, he never really interacted on a personal level, like trying to get information about the child he chose to play with. It was always, “Hi, I’m Parkyr;” “I like to swing;” “Let’s go on the slide;” “I have this… I have that… I like this,” etc. Potty training was a nightmare, but he finally conquered it after countless attempts. Talking was the most noticeable delay he had. He would learn new word(s) every day but would only say them once then never repeat them again. He conquered two-word sentences after his 3^rd birthday.

There were times during playdates that I would see other kids his age a lot more “advanced” in their development, which made me a little worried, but I always reassured myself that “all children develop differently,” and with that the doubts disappeared.

 

 

When did you first begin to worry about him? What did you notice?

I first began to get worried when Parkyr began kindergarten. He wasn’t making any friends, he was noticeably struggling with the school work, his meltdowns were becoming very intense, and he wasn’t excited to go to school. (What child IS excited to go to school?) Well Parkyr USED to be; when he was enrolled in Pre-K he would throw a fit when I picked him up because he didn’t want to leave, and he would scream and shout because I didn’t take him to school on the weekends. Little things started adding up; I chalked it up to just moving cross country and he hadn’t yet “adjusted” to the move.

When did you receive a diagnosis? What has happened recently for Parkyr?

The past 6 months of his life have been a blur. It all started with a note that showed up in the mail one day from his school saying that a meeting was set for me to attend with the principal and vice principal. When I entered the meeting I was thrown off guard; luckily I had brought my mom with me for moral support. In the room was the vice principal, Parkyr’s teacher, the school psychologist, a speech therapist, and another lady that I didn’t know. They came out and bluntly said that they believed Parkyr had autism, high functioning, but autism none the less.

Of course my first reaction was to immediately be put on the defense…denial. After their “diagnosis” was verbally given each one began to explain why they believed it to be true. As they began talking and describing Parkyr’s reactions, it was as though a light bulb went off. “You know what, maybe they all are right.” All the “Parkyr’s way” shenanigans that I just wrote off to a strong willed/stubborn child were starting to make sense. They gave me the number to the local regional center, and told me to set up an assessment.

How did you feel after receiving his diagnosis? What help were you able to obtain?

“This can’t really be happening!” As a mother, you want your children to excel, and become healthy, happy, and successful adults. I didn’t know how this diagnosis was going to affect my son. After doing lots of research, speaking to friends who have been through this, being introduced to new friends, and being pointed to the many resources available by my CDE teacher (who is an early interventionist as well), I was finally able to breathe a bit.

My son now has an IEP at his school; he attends speech therapy 2xs a week at school; he has a therapist and psychologist he sees at least 1x a month for both; and he gets 9 hours a week of in-home behavioral therapy. I don’t know what the future will hold for us all, but I can tell you that being proactive and having a strong support system is absolutely vital. It doesn’t matter how strong you think you are, you NEED to reach out to a support group and talk with other moms going through this, maybe even seek counseling for yourself. Whatever works for you that will grant you a little R&R.

What challenges do you face with Parkyr?

Raising a child on the spectrum is very challenging; there are a lot of ups and downs. The “ups” are monumental and help keep you afloat during the “downs.” The most challenging thing for me is going out in public. Think back to your last shopping trip…there’s always “that mom” who has lots of kids, all yelling, screaming, and crying, throwing a fit because they want a candy or toy, and for at least a split second you think to yourself, “she’s in over her head,” or, “those kids are spoiled,” or, “my kids would never behave THAT WAY.” Well I’ll admit it: I’m “that mom.” I have 3 boys, ages 5, 2, and 1. Parkyr gets very overstimulated when he’s around lots of people and gets very anxious in enclosed areas. Enter in the dreaded check-out line: my worst enemy and the cause of the most intense meltdowns. I have done many things to try to prevent such happenings but nothing works, and since dodging the check-out line and walking out of the store with a cart full of food is illegal, I have to grin and bear it. The looks and comments I get are very hurtful, but I ignore them and try to not let them get to me. My son, although a handful, is perfect just the way he is, and if people want to make assumptions or question my ability as a parent then let them waste their own time. My kids and I do not owe anyone an explanation.

 

 

What have you learned as his mother?

During this journey, I have discovered a strength inside me that I didn’t even know I had. There have been many days that I didn’t want to get out of bed, or that my mind would be racing because of everything on my plate. The millions of phone calls, the countless doctors appointments, the therapy sessions. The endless fights because homework needs to finished but never did get finished because Parkyr “HAD” to finish his Lego invention that took him 3 hours to build, take apart, build again, throw across the room, build, etc. I have felt as a mom of 3 demanding boys that I was being pulled in way too many directions, and I didn’t know how I was supposed to juggle all of their needs: my work, going to school full time, etc…something had to give.

Then to add icing to the cake: during my middle son’s 2 year check-up his pediatrician told me that I needed to contact the local regional to get him fully assessed as well. What were the odds of having not one but two children on the spectrum? I’ve learned to become even more creative, because let’s face it: if a child doesn’t want to do something, they won’t do it. Well, this same concept applies to children on the spectrum, only it is multiplied to the umpteenth power times infinity—NO JOKE! Re-direction and positive reinforcement (in the form of little $1 store party favors) have been my “go to” for getting my sons to listen, and to start/finish something, but even those have their limitations and are not always effective.

As I have noticed the changes in Parkyr, even before the diagnosis, I’ll admit I made a point of staying home. It’s not like I was avoiding my friends, but I was. I would get the mean stares from complete strangers, and I didn’t want to get stares from friends. Public meltdowns were, and still are, my worst nightmare. To be honest, I’ve had full on panic attacks just THINKING about going grocery shopping. I’ve gotten more open to start joining civilization again, because I know now and understand why Parkyr’s meltdowns happen, and if I stay proactive, I can’t cut out meltdowns completely, but I can at least make the melt down less intense, which makes a world of difference. I’ve had a few conversations with some friends and have told them that Parkyr was diagnosed with ASD, ADD, ADHD, and ODD, and some replies I got back were, “but he looks so healthy,” or, “he doesn’t look autistic.”

What advice would you give to moms who have just had children diagnosed with autism?

Be proactive! Don’t wait for “them” (doctors, therapists, schools, etc.) to call you… you call them…A LOT. Get a binder and start writing notes, names, and numbers of everyone you have to call, or have called.  As a parent you want to get all the help possible for your child and if you don’t stay on top of calls and remember all the people you need to contact, you will “fall through the cracks.”

Find outside support. Families are amazing support systems…take advantage of the open ears, and arms, BUT find a support group that has parents who are going through this or have already been on this road. They’re amazing resources and can steer you in the right direction.

Time out: This journey is completely exhausting, mentally, physically, and emotionally. I’m not even taking into account the daily struggles having an autistic child brings to the table. You have to take care of yourself BEFORE you can give your child 100%. This is the big reason I went back to school at the local college. I also take time for myself every night after all the kids are in bed and I watch the latest TV show. Being able to sit or lie down, uninterrupted…it’s a little piece of heaven.

This is a very long, difficult, complicated, frustrating, eye opening, amazing, and most rewarding journey you’ll ever be on or take. Stay positive, and know that in the beginning there is A LOT that is thrown your way and expected of you BUT also know that everything will level out and become less hectic and chaotic. I don’t know what the future holds for my family, but what I do know is that all my boys are loved unconditionally and that will never change no matter what is thrown our way.