April Recap

Yes, it’s May…but I failed to document some highlights of our action-packed April. So here goes:

Spring Break!

The first week of April Aden and Alex had spring break (ha- break, that’s funny). Since Aden was participating in a study, he still had class in the afternoon. This put a damper on potty training or perhaps it was my excuse. In other words, it didn’t happen. During grad school, one of my professors said if you write down your goals and make them public, you’re more likely to achieve them. Clearly, he didn’t consider goal-setting for twin boys, both on the autism spectrum. My next potty-training attempt will be after the semester ends, over the summer, when I have more time to commit. Commitment is key and right now our crazy schedules and my stress levels do not allow for it.

Watermelon and Sandwiches and Hot dogs, oh my!

Anyone who knows me knows I LOVE watermelon. I can eat one a week by-my-self! The first one I bought, I paid $7.99 which is pretty expensive. But considering Aden and Alex tried it/ate it, it was money well-spent. Aden also ate a sandwich: ham, cheese, and mustard on sandwich thins AND he ate a hot dog with ketchup and mustard. (Mindy and Lisa, our former OTs, would be proud!) It’s exciting to see them both trying new foods but I wish the foods were healthier. Alex does eat some fruit (apples and bananas and now watermelon!), but neither will eat vegetables. It’s frustrating but I’m trying not to worry about it. Here is a clip of Aden and Alex trying/eating watermelon for the first time: http://youtu.be/j3Iwa4Yj4Ho

Aden & Music  

In the past, Aden and Alex have struggled with motor-planning and imitation. One of the biggest improvements I’m seeing with Aden is his new ability to imitate, especially when it comes to dancing and playing instruments.

Here is Aden imitating my dance moves: http://youtu.be/uCEdUY-qzJg

Here is Aden playing the drums, don’t mind Alex and the rubber chicken, which I find hilarious! A rubber chicken…every home should have one: http://youtu.be/5KjRP3-Z_ho

Alex & Pete the Cat

Jenny, our parent trainer introduced our parent group to a children’s book called “Pete the Cat” by Eric Litwin. It’s a great simple story, it’s repetitive, has a musical component with a catchy tune. Alex is obsessed. Here is the Youtube video that started it all: http://www.youtube.com/watch?v=nUubMSfIs-U

Here is Alex “reading” the book at bedtime, he’s quite theatrical: http://www.youtube.com/watch?v=iesHB4tWJ-g

Brotherly Love

Here is my favorite video for the month of April: http://youtu.be/Z0jLMZlJWAY

There are so many amazing things in this video; I don’t know where to start…

(P.S. I have corrected the videos in previous blogs…for some reason they were set to private rather than unlisted…my apologies).

TLC Hoarders, Tot Edition

As I’ve mentioned in previous blogs, Alex is out-of-control. He is an emotional rollercoaster. One minute he is sweet, the next sour, complete with fussing, whining, tantruming over everything. Everything is the end of the world. I feel like I’m dealing with a teenage girl rather than an almost four year-old little boy. Here’s the bad news: I finally get the referral for a behavioral psych consult and it turns out our insurance won’t cover it. My insurance covers speech therapy through Kennedy Krieger. I don’t understand why mental health isn’t covered? My son can talk now but his behavior is what I’m concerned with.

Unfortunately his obsessive-compulsive behaviors are also back. Many moons ago, Alex always had to carry/hold two small objects in his hands. After months of intervention and “breaking-up” the behavior, it eventually went away. Recently, he’s moved onto collecting small objects and hoarding the objects. I’ve sought advice and it boils down to controlling the environment. I decided to put away all the small objects he usually gravitates to as well as his devices he uses for hoarding: bags, buckets, etc…He came home from school last Friday and looked lost. He even asked Jon on Saturday morning, “where is my bucket?” Jon ignored him. Alex is smart, he improvised. He found my Tupperware containers which have lids and started using those. He will also take his pillow case off and use that to carry his items. It’s extremely frustrating. I can’t possibility control every environment. I try to break up the behavior when I see it but it’s impossible.

Needless to say, Easter is his favorite holiday because it is acceptable to find/collect small objects and put them into a basket. Easter has been long over but he still asks to find eggs and “where is my basket?” I tell him the Easter bunny took them and will bring them back next year. After a short tantrum, he moves onto to something else. I am not looking forward to Halloween.

 

There is no doubt in my mind; he will find the most eggs in any Easter egg hunt.

Last weekend at the playground, he started collecting trash off the ground. I tried to break up the behavior but I also had to look after Aden who now likes to dangle from monkey bars waiting to be “rescued”. Now that Alex realizes he has pockets, this allows ample opportunities for collecting/hoarding. As soon as we got home, I went through his jacket pockets, only to discover a few specks of wood and dirt. Where did he take his hoard? Well…the little smarty-pants put the hoard in his hat and put his hat on his head so I wouldn’t be able to see it. Then he went to basement to store his prized possessions. Later that afternoon, I found his trash collection which included: mulch, a chewed up straw, a cigarette butt, and a water bottle cap (GROSS!) all stuffed into his cash register. Ugh! Well at least we helped beautify the playground.

Parent Training

When Aden and Alex were born I can’t tell you how many times I heard, “I bet you wish they came with an instruction manual?” Despite having twins, the first year was easy compared to what I deal with now. I never needed an instruction manual. Fast-forward to our autism diagnoses…now I could use a manual. Unfortunately, there is no such thing, but I have discovered the next best thing: Parent Training.

Initially, I wasn’t keen on the idea of parent training. I had received previous training from Infants & Toddlers and I participated in “Jump Start” another parent training at CARD when the boys started their intervention at two years. I thought it would be redundant and I had a million and one other things I could be doing.

Each week, we were encouraged to send pictures of our family. Our trainer, Jenny would create a PowerPoint slide to show in class. We began each Thursday by sharing our simple joy for the week. A simple joy is just that: simple. For me, my days and weeks are challenging and at times seem joyless; this forced me to find the good, no matter what that may be. I also enjoyed listening to everyone’s simple joys. It was an instant mood-enhancer. Here is the list of my simple joys:

“Aden and Alex are both responding to their names and can tell you their names when asked as well as the names of others”

“Aden said “I love you” at bedtime” (Who cares if its echolalia, it sounded adorable)

“I love listening to Aden sing Christmas songs and watch Alex pretend he’s going to visit Santa at the North Pole”

“Alex said “thank you” without prompt on Christmas morning after seeing his new playroom”

“Jon and I are going away for our 5-year anniversary”

“Aden used a new 3-word sentence: “take off coat””

“Aden is making progress with functional play; he brushed a doll’s hair and teeth”

“Alex is answering appropriate yes and no questions…before everything was yes”

“Aden is opening his mouth more and starting to repeat words”

“Alex told me what he did in Ms. Lauren’s class without prompt… “I play penguin game with Rhys, I get 8 fish!” (Ms. Lauren confirmed)

“Aden made a caterpillar in class, he brought it home and offered it some of his snack, “you hungry?””

“Alex built a Lego car and brought it to me to show me!”
Click here to see the video, I was so proud! http://youtu.be/rQzBNgyqi7A

“Finished up the SEED study, the blood draw went smoothly”

“Alex told Ms. Lauren what he was doing after class: “go to store and get cookie””

“Both sat on the Easter bunny’s lap for the first time in 3 years!”

After our simple joys, Jenny introduced our topic for the day. Throughout the class, we would share our experiences and ask questions. Almost every class I caught myself thinking, “this is common sense” or “why didn’t I think of that?” These thoughts were my “a-ha!” moments and they occurred regularly for myself and the other parents.

We were given homework (a way to practice new strategies) and therapy diaries to fill out (a daily record of the time we spent working on the strategies). Homework and diaries seemed like daunting tasks. It was something else added to my already full plate. However, the homework and diaries helped me stay on track. It forced me to stay on track. I can honestly say I may not have followed through with practicing all of the strategies had I not been given homework and specific directions.

I started to pay more attention to Aden and Alex. I noticed they played alone; they didn’t attempt to play with me or each other. They didn’t always play functionally with toys and would quickly lose interest in a toy and move onto another. It was difficult to watch but I learned what we needed to work on.

I think about parents I encounter on a daily basis. Whether it’s at the library or the playground, I see parents of, I assume, typically developing children, reading books, playing on their phones or Ipads or conversing with other parents. In other words, they’re NOT paying attention to their children. They’re not fully engaged. For me, this isn’t an option.

At home we started establishing routines, specifically song routines. The two most important things I learned was the effective use of pausing and that music must have meaning. I was familiar with pausing and have been using this strategy but I never thought about song lyrics.

Since I was having trouble getting Aden and Alex to clean up their toys, I created a routine. My usual attempt at clean-up consisted of the infamous Barney song, “clean up, clean up, everybody everywhere, clean up, clean up, everybody do your share”. Yes it is a catchy tune, but Aden and Alex don’t understand the words. Time for a change! With a large toy box in the center of the room, I changed the words to “put the toys in the box, in the box, in the box, put the toys in the box, Clean. Up. Toys. While I sang, I made sure my actions matched the words. I would also pause at “box” allowing them to fill in the blank. Both were able to participate when I simplified the language and created a routine. Here is a video so you can hear the tune of the song (pardon my singing voice, I’m no American Idol): http://youtu.be/KoVUydPLzXM

I also learned about play and why it is important as well as the different levels of play. Since Aden and Alex are at different levels, I need to tailor my play routines to fit their individual needs. Instead of being the toy-taker I get my own toy and join in. If Aden is flying an airplane, I grab another airplane and fly with him, and then I do something different with the airplane, like make a loop or land. I can’t believe how effective this is. At first, they both wanted to take my toy. But I wouldn’t give up. Overtime they have allowed me to join in and indirectly teach them new ways to play.

One evening, I shared this strategy with Jon. Since he spends some evenings with the boys; he needs to be informed. After I explained, I sat back and watched. Within seconds, I saw him take Aden’s toy and try to demonstrate. No! No! NO! You took his toy! Of course he looked at me like I was crazy. After some practice, he seemed to get the idea but it was obvious these simple strategies aren’t as simple to the uninformed.

I also learned how to play with Aden and Alex with and without toys. Like most parents, I would look at the age requirement of a toy before making a purchase. I made the mistake of getting rid of certain toys because Aden and Alex had “outgrown” them. When in reality, they needed additional practice with basic toys such as blocks and sorting cups. I also created a list of specific words for different toys and toy routines. I made a list of 10 words for certain toys/routines and kept it nearby. I joked about this to other parents but in fact, I needed a reminder. Aden and Alex love their Toy Story figurines. The list of target words include: Buzz, Woody, Run, Jump, Fly, Over, Under, Fast, Slow, and Rescue. As they learn the words, I will replace the words with new ones.

Recently Mary Beth Marsden’s website “Real Look Autism” went public…here is a segment on play, coincidentally Jenny, my trainer, is in the video: http://www.youtube.com/watch?v=V-c50HNnPg0

Aden and Alex’s pretend play started to expand. One day, Alex jumped on the couch and yelled “all abroad” like a train conductor. Then he used the cushions to make wheels. What I didn’t know was this is called “substitution” (using one object to stand in place of another). This requires some imagination. I didn’t think Aden was using substitution but the myth was debunked a few days later when one of his teachers told me he had used a block to pour juice! Wow- see why paying attention is important?

Here is a video of Aden and Alex playing and Alex using substitution. Not only does this video emphasize substitution but it also showcases Aden’s functional play skills. In the video, he is preparing lunch for his monkeys. He also pretend pours juice into a cup and hands it to me and Alex. A year ago, this wasn’t happening. http://youtu.be/GXkjb7h5FBQ (Don’t mind Alex and his “toga”)

As I mentioned earlier, I wasn’t keen on the idea of parent training because I had already received previous training, however the training occurred when the boys were not receptive. Recently, Aden and Alex have become more aware of their surroundings, especially people. The strategies are working and I’m witnessing great progress!

On October 18, 2013, I met the other parents whose children were also participating in the study. (In the picture above: Jenny (parent trainer), Tapriel, Jason, myself, Trelina, and Laura) We instantly bonded and formed our own support group. We laughed, shed tears, and shared our worries, frustration, and fears. We celebrated birthdays and holidays. We encouraged each other. Laura always said “it’s going to be okay”. That phrase lifted my spirits on more than one occasion. With the right people by your side, it is going to be okay. Overall, it was an amazing experience, an experience I wouldn’t trade for anything. We plan to stay in touch and have even made promises to attend our children’s graduation parties! Now that is more than a simple joy.

-              I received permission from the trainer and parents to include photo. 

Action-packed April

Howl for Autism

On Friday, April 12th I hosted a happy hour called “Howl for Autism” at Howl at the Moon (a piano bar in Baltimore). It was an opportunity for parents, family, and friends to enjoy a night out and show support for Autism Awareness Month. 78 people showed up, making it a HUGE success! This is now an annual event and my goal for next year is 100 people!

Honestly Autism Day

On Saturday, April 20th Jon and I attended our second Honestly Autism Day. Last year we attended shortly after the boys were diagnosed. We were hungry for knowledge and resources. I spent most of the day feeling overwhelmed or on the verge of tears. This year I felt much more relaxed and was able to enjoy myself. My tears were tears of joy and hope. I loved the keynote speaker, Ellen Notbohm and the teen panel never disappoints. It was also great to reconnect with friends and supporters. A silver-lining to autism is all the wonderful people you meet and who instantly become your friends. I can’t imagine my life without them…you know who you are.

ROAR for Autism

On Sunday, April 29th our family attended ROAR for Autism at Oregon Ridge. Although we didn’t participate in actual events such as the mile walk or 5K run, the boys had a blast at the playground and family fun festival. We connected with friends and teachers- it was great seeing everyone. The food give-a-ways from Wegmann’s was an added bonus…I learned that Aden and Alex both like Pirate’s Booty popcorn, a new healthy snack option.

My favorite part of the day was seeing the boys interact with the mascots. Seeing them hug and high-five the Oriole bird, Poe from the Ravens, and Doc the Towson tiger - it made my day. Aden was roaring with the tiger; it was adorable and oh-so-appropriate for the event. Of course I picked the perfect day to forget my camera, but the memories we made will not be ones I’ll soon forget.

ROAR for Autism is the first event I’ve attempted fundraising for. Probably because it’s the first time in my life I’ve felt passionate about something. ROAR was our way of giving back to the therapists and teachers who have made a difference in our lives. Originally, I set my fundraising goal at $500 which was far exceeded. Thanks to my generous family and friends (most of which are pictured above), we raised just over $1500! Wow!

April was loaded with fun and excitement but to be honest, I’m exhausted. I’m looking forward to a few uneventful weekends…

Extraordinary Progress

Last spring one of Aden and Alex’s previous teachers, Jillian asked Jon and I to speak to one of her graduate classes at John Hopkins and talk about what it’s like to raise twins on the autism spectrum. Both of us thought what an amazing opportunity to share our story. What we didn’t realize was the opportunity that would come from that experience. Just as we had finished our first speaking engagement, a student named Becky followed us out of the classroom and told us about an upcoming study at CARD. Unfortunately, the study was in the morning and siblings were unable to attend simultaneously. At the time, I thought it best that both boys receive services rather than just one.

In later months, the study opened an afternoon session. I decided to complete eligibility testing for Aden and Alex, in hopes that one would be selected for the classroom portion. Since every child on the spectrum shows different symptoms of autism, there is no one-size-fits all program to address every child’s needs. That’s where autism research comes in. As you know, we recently completed the SEED study (Study to Explore Early Development) back in February while concurrently Aden and I were also participating in the Autism Speaks study. For me autism research means answers, discoveries, and progress. Autism research gave our family an opportunity.

Both boys were also on the waiting list for the Achievements program at CARD. Finally, I received the call that Alex was randomly selected for the parent training only and Aden was randomly selected for the parent training AND classroom portion. YAY! I will discuss my experience with parent training in my next blog.

A few days later, I received a call confirming two spots had opened up in the Achievements program. Talk about tough decisions. Aden and Alex had been on the waiting list since their 2^nd birthdays. After a lot of thought, we decided to stick with the study for Aden and Alex would begin Achievements. Luckily, you’re allowed to decline your Achievements spot once and still remain near the top of the list. However, the second time you decline, you go to the bottom of the list.

October 2012

Aden attended class Monday-Thursday from 1pm-3:30pm. The class structure followed the Early Achievements model: Play, circle, story, playground, DTT (Discrete Trial Training), sensory, snack, and goodbye song, not always in that particular order.

When Aden began the study, he was mumbling and barely opening his mouth. He was experiencing sensory-issues, aversions to touch, and had a hard time focusing and remaining in his seat. He had trouble entering the classroom and transitioning between activities; he was having the same issues that he had when he entered his six-month early intervention program when he was two. This had me worried, had he not made any progress in a year?

Over the next six months, I received a tremendous amount of feedback from his teachers whether in-person or via email. Every issue he had was addressed. Speech was incorporated into the class routine and picture schedules were used to help with transitions. For sensory, he wore a small backpack filled with medicine balls. Before, Aden would roll around or do what I call, “flying cartwheels”. Within a few weeks, he no longer had to wear the backpack and was able to transition without acrobatics.

December 2012

In December, I started to see a huge change in Aden. He was starting to open his mouth and words were coming out! He was making more requests and initiating play. He was also using gestures such as pointing and waving. Our prior red flags were slowly fading away.

He was also becoming more affectionate and he seemed more aware of people in general. His personality began to change and for the better. I felt like I was connecting with him on a higher level. It really was remarkable. His teachers told me, he was working for hugs and that he was giving them freely to his classmates. Aden was interacting with his classmates!

With good, comes bad. Aden started exhibiting aggressive behaviors such as kicking and hitting. This had me concerned. The teachers did a great job ignoring the behavior but it was still difficult to watch. Mid-December, a behavioral psychologist came into the class to observe Aden’s behavior. She gave suggestions on helping him sit in circle by offering different rewards/incentives. As I’ve mentioned in previous blogs, Aden is difficult to motivate and the psychologist agreed. It seems Aden grows tired of motivators rather quickly. This has been my experience at home, as soon as I think something is working, he becomes bored or disinterested, making life extremely difficult.

January/February 2013

After the holidays, Aden went through a rough patch, maybe it was the weather or the constant colds. He didn’t seem as aware, he had trouble entering the classroom, and even worse leaving the building. He was becoming bigger, stronger, and faster and I could hardly manage him. January and February were rough for both of us.

March 2013

The beginning of March, he seemed to be doing better. Mid-March, I noticed more positive changes both at home and in the classroom. The picture above is his first time blowing bubbles! In the classroom, his play skills continued to improve and he seemed much happier. One day during observation, I watched Aden complete his DTT or “teacher time”. I was impressed with what I saw. He had to sort different animals into their correct habitat, i.e. cow, sheep, pig = barn and tiger, elephant, zebra = zoo. Aden loves animals but I had no idea he knew where the animals belonged. Despite his behavior issues, he was learning!

April 2013

I could go on and on and talk about all the wonderful progress Aden has made over the past six months but the real surprise came when Aden completed his post-testing. I was anxious about testing since in the past Aden has not been cooperative. He usually runs around the room or performs his famous flying cartwheels. His inability to focus prevents him from completing the tasks, but not this time. Sure, he had his moments of frustration but in the end, he performed. For once, I had tears of joy. I was crying because he was completing tasks I had never seen him do, he was showing all the progress he has made, and he was making me and his teachers proud. After two days of testing, the therapist went over the scores. In some areas, Aden has made a year plus progress in just six months! “He has made extraordinary progress” she said. What can I say, Aden is extraordinary.

Thursday April 11^th was Aden’s last day of the study. Parents were invited to attend a graduation party, the first of many for our children. Each child was presented with a gift bag, which included a certificate, a superlative award (Aden won “Best Roar”), a personalized game, and my favorite, a book entitled, “If i could keep you little…” by: Marianne Richmond.

I held it together at the party until one of their teachers began to cry. I can’t imagine what it must be like to get to know five amazing kids and watch them learn, grow, and progress over six months and then have to say good-bye. What the teachers don’t realize is how hard it is for the parents to say good-bye.

The parents presented each teacher with a framed photo surrounded by each child’s handprint (Great idea, Trelina!). Hopefully, the photo will serve as a constant reminder of the difference they’re making in children’s lives. They’ve certainly made a difference in ours.

Thank you Jessie, Hattie, and Becky for the amazing opportunity.

*I received permission from the parents and teachers to include photos.

Light It Up Blue!

April 2^nd marked the 6^th annual World Autism Awareness Day. Autism Speaks created the “Light it Up Blue” campaign to shine a light on autism and spread awareness throughout the world.

Next year I need to get on the ball and buy a blue light for outside. I did wear my Autism Speaks blue puzzle-piece pin!  

April is filled with events involving autism awareness. Two events I’m attending this month include Howl for Autism and ROAR for Autism.

Howl for Autism

On Friday, April 12^th I am hosting a free happy hour from 5pm-8pm at Howl at the Moon, dueling piano bar, in Baltimore. This happy hour is an opportunity for parents, caregivers, friends, family, teachers, therapists, you name it, to come together and show support for autism awareness. Anyone who deals with autism on a daily basis needs to make time for fun. Our lives are stressful so while I’m a huge advocate for autism awareness and early intervention, I’m also an advocate for fun. Let’s have some. Just say “Howl for Autism” at the door to receive no cover charge, free drinks, and a free appetizer buffet. Hope to see you there! I’ll be the one in blue.

ROAR for Autism

ROAR for Autism is a Kennedy Krieger sponsored event. Since Kennedy Krieger, more specifically CARD (Center for Autism and Other Related Disorders) is near and dear to my heart, I decided to participate in this year’s event. This is my first attempt at fundraising. Probably because it’s the first time in my life I’ve felt passionate about something. Without CARD and the wonderful people who work there, Aden and Alex wouldn’t be where they are today. I set my personal fundraising goal to $500. I’m happy to report I’m only $100 away from making my goal! My team has already exceeded $500 thanks to the generous donations from family and friends. For more information or to donate, click here: http://unlock.convio.net/site/TR?fr_id=1130&pg=entry

On Sunday, April 28^th Jon and I will attend the event with Aden and Alex. Unfortunately we won’t be able to participate in the 5K walk/run or the 25K bike; instead we will be attending the Family Festival. We’re looking forward to it.

Autism is like any other monthly celebration or monthly awareness. October is Breast Cancer Awareness month but that doesn’t mean women with breast cancer don’t face challenges all year long. The same applies to autism. I spread awareness year round so for me this month is more about a celebration of unity. It’s about embracing the support, understanding, and acceptance from those who deal with autism on an everyday basis as well as seeking support, understanding, and acceptance from those who don’t.

Easter Sunday

Last year Easter Sunday was a blur and this year was no different. Well, unless you add in the fact that Alex was sick and it was raining. Yay. This year the Easter bunny brought baskets, a small castle and figurine set, and drums. Yes, drums. What was that bunny thinking? On the bright side, Aden and Alex love playing the drums and a bigger, nicer set may be in their future, along with my keyboard from my piano playing days. Both seem to love music, whether it’s singing, dancing, or playing instruments, so I’m doing my best to encourage them.

Check out this video: http://youtu.be/PIl9PyMP9qg Aden is playing the drums, Alex says “my turn”…Aden gets up and Alex takes his turn. Best turn-taking I’ve ever seen and I caught it on video!

After playing with their new toys and eating way too many M&M’s, we headed over my grandparents’ house for lunch. Over there, they received two more baskets each with more fun toys and loads of candy. Spoiled? I think so. Unfortunately, Alex was running a fever so we headed home. Jon and Aden went over Jon’s parents’ house for Easter dinner (and you guessed it, he received another basket!). Alex and I cuddled on the couch. I’m having deja-vu from Christmas. Alex is sick every holiday, school break, or vacation!

Since it was raining, our backyard Easter egg hunt was postponed until this Sunday. I’m hoping for nicer weather, after all it’s supposed to be spring!

March Madness

March is my least favorite month, mainly because of crappy weather and endless sickness. Once again March has lived up to low expectations. The first two weeks weren’t too bad. I started spring cleaning and was feeling productive. Aden and Alex were both getting good reports from school, both morning and afternoon. Then it hit! The cold of all colds and just one week before spring! It started with Jon, then me, then Alex and Aden. I kept them home from school two full days due to chronic coughing and runny noses. Although they were sick, they were still full of energy which meant fun days stuck in the house. I tried to stick to a schedule: T.V. show, breakfast, play-doh, storytime, music/songs (CD with motor-planning skills: Wheels on the Bus, Itsy Bitsy Spider- thanks Jillian), free play, and lunch. By 1pm I was done. Exhausted. Spent. Ready to be rescued. No luck.

By Friday afternoon, both were having nasty poops. Not diarrhea, but close enough, probably due to the drainage from their colds. Sorry TMI. It was a lovely way to start the weekend. We kept them home from swim class on Saturday and stayed inside all day. Sunday my Mom came over for a visit and watched them so Jon and I could go out to dinner with our best friends, Melissa and Dustin- it was the highlight of my weekend.

Monday it snowed 4-6 inches so no school. We played in the snow, hid Easter eggs, and built a snowman. My fondest memory is when Aden took off his mittens and placed them on the snowman. Then he gave the snowman a kiss and hug before tackling him. Although our snowman was faceless, he was loved.

We also baked and decorated cookies which is always a huge hit. March redeemed itself…for a day.

Wednesday morning, after dropping the boys off at school, I came home and had just finished unpacking all of the Easter stuff, bags and boxes were everywhere, decorations, baskets, you name it, scattered across the table and floor. Ring, Ring… “Hello, it’s the school nurse. Aden had diarrhea and you need come pick him up”. Terrific. I ended up taking Alex home too because he was irritable and having a horrible day. That evening when I returned home from work, Jon informed me Aden had spiked a fever and threw up. Thursday was our much-anticipated trip to the zoo with their morning class. Since both boys still had coughs and now Aden was running a fever, we didn’t go to the zoo but instead went to the doctors. Alex had fluid in one ear which eventually results in an ear infection and Aden was diagnosed with pneumonia. And the Mom of the Year award goes to…not me. I felt terrible. Although the doctor said I had no way of knowing…pneumonia is serious. Both were started on antibiotic.

Since Alex was okay, I took him to his afternoon class. They were having an Easter egg hunt and a surprise visit from the Easter bunny. I didn’t want him to miss it. I was also able to observe his class.

In my last blog, I wrote about how Aden has undergone a huge change for the good. Unfortunately, Alex is the exact opposite. I’m hoping some of his recent irritability was caused by his never-ending cold but I’m not so sure. He is continuing to make progress in language, play, and social skills but his defiant behaviors have my head spinning. I’ve been using the 1-2-3 Magic approach for discipline but this method proves to be a reactive strategy not a preventive one. Lately, he is having fits about everything. I try to ignore him, I really do, but it’s not easy. He doesn’t like being told no and he will throw the worst fit imaginable when he doesn’t get his way. It includes screaming, hitting me, hitting himself, throwing whatever is in reach, full on kicking and convulsing. It’s a scary sight. I’m not sure what to do other than an exorcism. Yeah, it’s that bad. At the moment, I’m waiting on a referral for a behavioral psych consult. I need help.

Today was day 1 of spring break. Ha, “break”…no such thing. I’m dreading next week. Not only because of the change in routine (that’s frightening enough) but I am attempting potty-training yet again. I’m so tired of changing diapers and buying them. Plus Alex can actually change himself. That’s right, a few nights ago, his pull-up was full, he took it off, and put on a fresh one. Oh, hell no! Aden is pretty consistent in his afternoon class so I think it’s a matter of establishing a routine with him and sticking to it. Wish me luck and Happy Spring Break!

New Season, New Aden

I love winter but with the disappointing lack of snow this year, I wasn’t sad to see it end. Also, February was a difficult month. More than once I contemplated therapy or medication. I was riding an emotional rollercoaster: good days, bad days, the glass is half-empty, the glass is half-full, the glass is just empty. I kept telling myself that eventually things will get easier but instead things were getting harder. Similar to the theme of other blog entries, I needed a change.

As the season changed so did Aden and finally in a positive way. It’s as if a switch has been flipped. All of the sudden he is tuned-in and more aware.

After the holidays, Aden entered the “I don’t like people, I don’t like places” phase. This made it difficult to go anywhere or be around anybody. I have been visiting my grandparents once a week since the boys were born. Aden never had a problem visiting until he entered this phase. Out of the blue, he was suddenly terrified to go inside. I don’t know if it was a sensory issue or something else? That’s the thing with autism, sometimes there isn’t a clear explanation…there isn’t any explanation.

Last weekend when we visited, I expected the usual behavior. He would stand outside or run around the house. I would eventually have to drag him inside only to have him melt into the floor. After a few minutes of tantruming and nearly passing out, he would make his way into the living room to play with toys, ignoring his beloved great-grandparents.

This visit was different. Aden went right up to the door and greeted my Mom-Mom (GG) with words “Hi GG” and a big hug! Throughout our visit, my Poppy kept commenting on how “different” Aden was. Aden and Alex are always under a microscope, their every move is scrutinized, and whatever they’re doing is categorized as autism or typical 3 year-old behavior. This time I welcomed the scrutiny. My family’s comments confirmed the same revelations I was seeing at home and hearing about from Aden’s teachers.

Aden was also having trouble going into his morning classroom and he was having trouble leaving CARD in the afternoon. This resulted in many dreadful mornings and tearful afternoons. Recently, things have gone back to normal…well, our normal.

I’ve noticed Aden is more engaged. He is beginning to play more functionally with toys. We still have a long way to go but he’s making progress. He is opening his mouth and words are coming out! The words may not always be clear but he can pretty much repeat anything we say. I’m not always sure he understands what he is saying, but there are times when I look into his eyes and I know he gets it.

At bedtime, after reading books, we sing a few songs. To hear him sing along to songs we’ve been singing for years, it brings tears to my eyes.

There are still challenges. He is an extremely picky-eater and refuses to take a multi-vitamin. Potty-training is still a hit or miss, literally. His endless amount of energy hasn’t changed and he is quite a risk-taker. I’m surprised we haven’t ended up in the emergency room. The issue of elopement has never been more worrisome. It’s definitely a blow to the ego when your 3 ½ year-old is faster than you.

For a while Jon and I were both concerned with Aden’s lack of progress. He had hit a plateau and we were seeing more negative behaviors than positive ones. I welcome this change and I’m anxious for what’s to come.  

Restraint

After our very successful visit with the Easter bunny, we decided to walk around the mall. Aden and Alex both had on their monkey and bear book bag harnesses. We are working on getting them to hold our hands or walk beside us but it’s still a challenge. Jon and Aden were a few feet in front of me when I overheard a comment from a family sitting on a bench. I heard the word “leash” and assumed she was referring to Aden’s harness. Whatever. I followed behind with Alex. Then, the women, who appeared to be the Mother, said loud enough so I could hear, “you’ve got to be kidding me” all attitudy. It took every ounce of strength for me to keep walking. I wanted a confrontation mainly because I knew I would win and perhaps I could teach a valuable lesson. Here’s what I would say: I wish I was kidding. I wish I didn’t have to worry about my son running away from me and unknowingly putting himself at risk for injury or death. I wish I didn’t have to worry about my son getting lost, getting taken – never to be seen again. These are the things that haunt me and for that reason I take precaution. Finally, I wish for one day, you could walk in my shoes, and then perhaps you would suspend your judgment and shut your mouth. You see its okay for people to “think things”. I’m sure my traveling circus provides quite a bit of entertainment. But to say things out loud, hurtful things, things you know nothing about, it’s unwelcome. Have the common courtesy to show some restraint. Because if I would have acted out what I was thinking when I heard your comment, you may have learned a new use for that leash.

Restraint, like Aden and Alex’s harnesses, I never leave home without it.