Kieran's Communication

Often times those with autism have difficulties with verbal communication. This is not always the case but certainly it's very common. The abilities vary greatly, as with all other characteristics.

When people ask me if Kieran is verbal or non verbal, I have to explain rather than just give a quick answer. Kieran is very verbal, though he is not conversational and often times his communication is only understandable by our family. He does a lot of repeating what other people say, which can be interesting and is a good start for teaching him to use the words on his own. For example, if you ask him a question he will often just repeat the last word or two of your question. Other times you may get a yes or no answer, depending on the question. Both of those are very inconsistent though the repetion of words, or echolalia, is happening very frequently now. Echolalia is the automated repetition of things others have said, which is very common among those with autism. 

Kieran has little difficulty understanding what we're saying, that's very obvious, as responds appropriately to commands. He's also very vocal in general and can name objects or flash cards for his therapists but his overall verbal communication is not that of your "typical" three year old. A lot of what he CAN say, is not used in an unprompted manner on his own. He often babbles and it appears to be random and incoherent (sometimes it is) but once you know him well, you can pick up on him reciting things he's heard before, such as from TV shows. He tends to do this when he's anxious or overstimulated. Great progress has been made, that is certain, but communication continues to be a barrier for him.

PECS or Picture Exchange Communication System is a very common system for assisting those on the spectrum with communication. It involves photos or symbols being used as a way to communicate wants or needs. Educators or parents often use this method for visual cues, which help those on the spectrum to follow a daily routine or make choices. We haven't exactly implemented this full time, but have used imagery to assist Kieran in a couple ways. 

The first time we used any PECS related supports was during his Speech therapy sessions with Early Intervention, back in the spring of 2014. The sessions are play based, which initially was a struggle because Kieran has difficulty with typical play, transitions between activities, and focus. In order to remedy this, she began using a FIRST/THEN card. 

A FIRST/THEN card is literally that. You place a photo of the first activity under FIRST and the next activity under NEXT. This allows the individual to see what is going to happen. They can learn to associate that image with the activity and also learn to follow along in order to finish tasks. It also seemed to decrease his frustration with each session.

When we first implemented this, he wasn't interested, but as time went on it became a motivator. He may not like the first task but he would gladly complete it in order to get to a task that was preferred. Using the photos as cues taught him an immense amount of patience, focus, and communication skills. By the end of his Early Intervention run, his therapist only had to verbally say FIRST/THEN. When she did use the card, Kieran was able to place photos on it by himself. Basically trying to show his therapist what he wished to do during that specific session. I still use those cues/prompts to this day when explaining tasks at home. The cards aren't necessary any longer. They truly served their purpose.

Kieran attends preschool, where they also use PECS related tools for things such as transitions from one activity to another. As far as they've told me, it's helping him there, as well.

Another photo related tool was something I created - family photo cards. Kieran doesn't care for these but I still bring them out and show him the cards with family members photos every now and then. He can say mommy, daddy, Cameron (timmie or cammie), Connor (Nonnor), Memaw, Pappy, and Pop Pop. 

The future may hold some more PECS related tools for Kieran. We struggle with balance for him, as we don't want to throw a million and one supports at him and hope they all stick. With him just finishing Early Intervention and starting preschool, we are letting the dust settle. We will see how he progresses and go from there, as with anything! He continues with his multiple support therapies at school and outpatient, and we see so much progress and the willingness to learn from him. 

If you're new to Autism, please know that as simple as these tools seem, they aren't simple for the autistic person. These things can truly change a persons quality of life. 

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Autism & Holiday Fun

My husband and I have three young boys, one of which is on the autism spectrum. Kieran is a tough little guy that has delays in most areas, but he is very bright and has come a long way in his ability to self regulate. This often times allows me to push the limits with him in hopes that new outings or adventures with his brothers will be a success. Sometimes they are a partial success and other times they are a disaster, but usually more positive than negative.

With the winter Holidays coming up, a lot of families in similar situations have to weigh their options. Today we decided to gather at our towns Light Up Night event. I snapped this great photo of my boys. They all posed nicely, Kieran even said, "Cheeeeese", one of his new words. A lot of these photos I share with friends and family on Facebook. It probably looks like we have an amazing time everywhere we go. Photos definitely do not speak a thousand words, when it comes to Autism, unfortunately. We do have a lot of good times, that's for sure, but there's so much complexity and planning of those times, especially with the gatherings becoming more frequent at this time of the year.

Minutes after this was taken, Santa arrived inside of a Fire Engine. The sirens were blaring, people were crowding the streets, and Christmas music was playing over a loud speaker. Kieran began to panic and tried to flee the area. He had no interest in what was going on, only that he knew it was overwhelming his senses and he needed to be gone - asap. I spent a few minutes trying to walk around the corner with him but he was too upset and already beginning to melt down. He attempted to run into the street and refused to let me touch him. We parked very close, so my husband was able to get him to the car to allow him to calm.

My boys have a blast together and we don't like to limit places we take Kieran, but things like this are always a possibility. It's not a typical toddler response, it's not just a kid being stubborn, it's a true neurological response to overwhelming stimuli. Keep this in mind when you see children acting in similar ways during the holidays. Holiday parties, malls, visits to santa, grocery stores - they all pose a threat to some individuals on the spectrum. Be kind and understanding this holiday season.

New Chapter

This past year has been nothing short of life altering and amazing. Our youngest son has had numerous health concerns since birth, none of which are/were life threatening, yet all required some type of medical intervention. A year ago we had just finished his second round of sclerotherapy, a chemical injection that collapses blood vessels. He had/has a venous malformation on his left side where his neck meets his shoulder. Last year it was larger than the size of a golf ball. Once the swelling was gone, it appeared to be totally gone. This was confirmed via ultrasound in December of 2013.

In the background of all this stuff, we were noticing that he was not developing along the same path as his twin brother. We knew his speech was behind, although it had once been further along than his brother. We contacted Early Intervention and he was indeed showing a deficit. Speech Therapy began and we moved forward. We couldn't really put our finger on what was different about him, though my husband and I had mentioned autism to each other. To me, he was very oblivious, often danced and babbled his way through the day. We experienced a lot more tantrums/meltdowns with him than with his brother. We might have just written it off as him being an irritable kid. Numerous public meltdowns started to occur, which was why we also had a developmental specialist involved. 

Therapy at our home was twice a week for two hours. The sessions proved to be very tiresome for him and for myself. He was uncomfortable with both therapists, which was a common thing for him with unfamiliar people. He was also not willing to participate in the play activities. Some of that was his inability to do so, stubbornness, and the sheer fear that he had. After about 3-4 months he began to warm up and welcome the individuals into our home.

At the end of March, his developmental therapist mentioned autism to me, while tears ran down her cheeks. She cried, I didn't. Not sure if I was numb or just knew in the back of my mind that those words were coming. We had an official diagnosis of Pervasive Developmental Disorder later that same week from a Child Psychiatrist. 

Things progressed with our son as the spring/summer went on. Occupational and Behavioral services were added into the mix, as well as more Speech therapy. Our schedule quickly went from two days a week to 5 days a week, some days with more than one session, as well as therapy at a local outpatient facility.

From my point of view, our biggest blessing was his original OT, who mentioned that she felt a lot of Kieran's difficulties stem from Sensory Processing Disorder. He was so very under stimulated, that public outings become too much for him. For months on end, he spent time melting down at outpatient settings and at home.

During all of this, his speech continued and continues to improve. After months and months of sensory issues, we witnessed him beginning to adapt. He now spends so much time dancing, jumping, flipping off couches, coloring, scripting...anything he can do to keep himself regulated. July arrived and like the flip of a switch (but not really...lots of hard work from him!) he could go to his outpatient therapy sessions with no problems at all. Two months later and he was going back to the therapy room by himself.

We are so shocked and amazed at how much progress he has made. We attribute it to normal toddler growth spurts, trial and error, his intelligence (very high!), and our wonderful therapist. Last week was his very last week of Early Intervention - the best thing that ever happened to him/us. He moved on to preschool and will receive therapies there, as well as continue outpatient sessions.

We know that he has a battle ahead of him, but we can not wait to watch him grow, along with our other two. His older (neurotypical) brothers have also come along way with their abilities. Our oldest is in 1st grade and has become a very wonderful reader, and his twin brother has also started preschool, as he's been ready for a year now! They are both wonderful brothers and are so understanding of their baby brother. 

The first week of preschool was a success for both and all three are adapting well to our new daily routine. So thankful.

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End of Summer

It's still summer, technically, but it's September 1st and it's raining. Last week our oldest went back to school (first grade!) so hey, summer is over! 

It's safe to say that this past summer was nothing short of a roller coaster. The youngest two certainly hit a ton of growth milestones and the oldest held his own, as well (lost a few teeth!).

Much fun was had - from outdoor excursions to indoor madness and enough autism related therapy to make your head spin. We did our best to make sure the older two had some one on one time to balance the madness out. Not sure that it was sufficient but we certainly did what we could. 

On the autism front, our youngest had a VERY rough time at the beginning of summer. This left me fairly stressed and baffled, but things seem to be going much better now. He's developed the ability to self-regulate and we've figured out what his sensory needs are. He's truly a different child now than he was just 3 months ago. Preschool is on the horizon! 

Now back to our regularly scheduled holiday festivities.....I mean, relaxing.

Restaurant success!!

With our youngest having autism and sensory issues, we've never been able to enjoy a family dinner at a restaurant. Daddy usually has to take him to the car, as he can't handle the stimulation or sit still in general. We are SO proud of him though. Last Sunday he did it! Sat through dinner (with the help of an iPhone) AND ate his meal. 

Summer has been long. Lots of interesting developments....and plenty of progress! 

Thanks

Sometimes days are long and tough with three kids - we all know that. The autism "stuff" throws another level of intensity into the mix between the constant therapy sessions, behaviors and the mental effort behind all of thee above. 

Today one of our little guys therapists started her day by complimenting my husband and I. She went on about all of our efforts with our son and how we are a pleasure to work with....etc. 

The little things count - say something nice to people every now and then. ;-)