Tuesday, December 16, 2014

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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Friday, November 28, 2014

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.

Friday, November 14, 2014

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.



Thursday, October 16, 2014

Facebook

"Like" us over on Facebook! Hoping to be more active in the near future!

Five Hammerheads


Monday, September 1, 2014

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.


Wednesday, August 6, 2014

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! 

Thursday, July 17, 2014

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. ;-) 

Thursday, June 19, 2014

Respite to the rescue!

The littlest Hammerhead still continues to make progress. I will say that the days are long and the meltdowns/tantrums are many.....but it is what it is. We are hoping to introduce some new resources and tools for him soon. All in all, I'm glad it's summer and all 3 of the kids are home every day. 

But did I mention that I'm tired? Hah! Well we do get some relief in the near future. Mini road trip for dad-Hammerhead and I. The kiddos will be hanging with some relatives for one night. I may need to go to bed at 7pm tonight in order to survive a late night tomorrow (concert). Wish us luck! ;-)

Sunday, June 1, 2014

Kindergarten Graduate!

Our oldest Hammerhead has graduated from Kindergarten. Very proud of how much he has learned and grown in the past year. 


Wednesday, May 28, 2014

Amazing Day!

Our youngest had one of his best days yet. No meltdowns, no tantrums, many words spoken during speech therapy...etc. 

He was focused, engaged in activities during therapy and all around well-adjusted. These are the days we are thankful for. Progress is great and his mood/behavior definitely set a great tone for myself and the kids!

Yeah!

Thursday, May 22, 2014

Growth

It's so very easy to be negative or depressed over autism....or anything medical related. But, finding the positive can really help. Some days I find it randomly, others I force find it...and some days just suck. Life!  ;) 

Today's realization is based around therapy goals for my youngest. We've always been a family that tries to minimize unnecessary stressors. For example, we rarely take the kids grocery shopping. Why? Because it's crazy and sounds ridiculous. There's two adults here, let the kids stay home. Right? Yes, but Kieran needs to experience these things. So we are stepping out of our comfort zone and forcing ourselves to welcome unnecessary stress in order to grow. In order for all of us to grow. 

We can't spell Barney, or avoid letting him see his shoes forever. It's silly really. If we allow those things to be the norm - (saying, not spelling words, not hiding shoes....etc) he can and will adjust to them. Yes, your shoes are laying out - but we aren't going anywhere! We may not be going anywhere for a few days. There's the shoes, buddy! He can't meltdown over the shoes for two days. At some point it clicks that shoes and going out to play are not always connected. 

So there it is - my random positivity gained during one of his therapy sessions this morning. It dawned on me that we used to have to shut the front door during therapy or that's all he would focus on. But today - it was open. It's been open for weeks. He moved on. Growth...progress!




Tuesday, May 20, 2014

Celebrate small victories!

Today was outpatient speech therapy session #1 for my youngest Hammerhead. This little dude is typically so scared and concerned when/if strangers approach him. Six months ago, a waitress in a restaurant that wasn't even looking at him, would cause a meltdown. Today, he went back to the therapists office for his 30 minute session - WITHOUT me! 

Don't get me wrong, the session didn't go 100% smooth. He was loud and upset for at least 10 of the 30 minutes, but he did cooperate for some if it. Meanwhile in the waiting room, his older brother was busy saying, "hey girrrrrrl" to a little girl a year older than him. Such a ham. 

Like the subject says, today we celebrate  small victories - but in reality, it's pretty major for him! 

Sunday, May 18, 2014

Therapy

Our youngest has therapy during the week to make sure we're offering/providing the appropriate supports and tools for him. 

We are fortunate enough to reside in Pennsylvania, where we've experienced no wait lists at all for Early Intervention services. The same goes for his outpatient services, which is through our insurance.

The schedule looks something like this:

Monday - Developmental (11-12pm), Behavioral (1-1:45pm)
Tuesday - Speech, outpatient (1-1:30pm)
Wednesday - Speech (11:45-12:45pm)
Thursday - Occupational (9-10am), Speech (10:30-11:30am)
Friday - Speech, outpatient (11-11:30am)

Then comes the weekend where we try to fulfill his social goals (and the others by default) by getting the whole family out into the community. This may be something as simple as a solo trip to the grocery store with daddy, a family trip to the playground or to a local museum. You know, typical things that families do.

He has, in the past, spent a lot of time in meltdown mode while in public. Much progress has been made in that area, as he does very well in situations where he can roam freely without interaction from strangers (playgrounds, museums...etc). 

The problems begin when he must contain himself and has to keep himself stimulated or distracted from individuals or situations. The longest he has made it in a restaurant is around 10 minutes, which is why the summer goal is to extend that. 

So many goals. So much more developing to do for our young little guy (guys!).

Escape from Babyville!

There's always a lot of crazy developmental "stuff" going on in any home where young kids reside. Seems like our house is always in super hyper crazy mode when it comes to that topic. 

The oldest of our twins decided he was going to perform a jail break recently. He jumped and banged and kicked his crib enough for the front rail to fall off. Very happy to report that he now sleeps soundly in a toddler bed - one in which he never gets out of! Go Team Hammerhead! 


PDD-NOS

What does pdd-nos mean or look like for/to you? Each person or family will have a different yet similar answer, as no person on the spectrum is the same or has the same traits/symptoms.

For our little guy - it means the following:

- repetitive behaviors
- obsessive interests in specific topics
- difficulty interacting with peers
- impaired/delayed verbal skills
- excessive self-stimulating/soothing behaviors

All of those things and others are issues he/we are dealing with and receiving support and guidance to work through. 

The important thing to know is that he is consistently inconsistent. What may be true of him this week - may not be the next. With this in mind, it can make routines difficult. Most individuals on the spectrum require or do well with routines, which is definitely the case here, but he also likes to randomly change that routine. 

With all that out there, I am hoping to use this blog to document week to week progress/regression so that we all have a nice place to see it written out. At some point, I will share this all with those that may be curious. 



Sunday, May 4, 2014

Perspective

Autism has dominated our minds over here since we received a diagnosis for our youngest hammerhead. He's what most would refer to as - high functioning, yet that doesn't make the diagnosis any easier to be "ok" with.

Perspective is what I'm trying to keep in mind. Yes, he has major social and language delays, but he does speak, he does appear to be your average toddler. He's not, but most would assume he is. What he is is inconsistent. He flaps, he jumps, he has "different" play habits, he's often times in melt down mode, he has fixations, and many other obstacles to overcome. He's also very loving and affectionate with those he knows well. He's a very tough little boy who shows so much potential. 

The future is unknown. He's 2 1/2, how can we know how he will develop? This goes for ANY toddler. So for now - perspective. I'm going to try my best to keep perspective....in perspective. 

Monday, April 14, 2014

Introduction

I'm not a writer and that will be painfully obvious, I'm sure. What I am is someone that needs an outlet, a place to put my thoughts when I've babbled enough to those that will listen. This will hopefully be that for me. 

What I am is a daughter, a sister, a wife, and a mother of three. I have a bachelors and masters degree - but right now I am a stay at home mom and wouldn't have it any other way.

My amazing husband is an awesome father, co-parent and all around good guy. Without him I wouldn't be able to be at home with our kids. 

Our oldest son is 6 and youngest two (twins) are 2 1/2. The oldest was that child that does everything perfect - from teething early to sleeping the night from (nearly) birth. The twins are a different story. They are two very unique little boys with very unique personalities. We have an ornery older brother, that's smaller, yet dominant in his developmental abilities. And we have our youngest, a very loving and sweet dancing child that was recently diagnosed with Pervasive Developmental Disorder (PDD-NOS), on the autism spectrum. 

Life can get hectic and a bit crazy but we are all very fortunate. And crazy. All five hammerheads.

UPDATE: (11/21/14)

When I originally wrote this piece I did not explain the hammerhead reference. If you are curious, it's just a silly insult that our oldest son has been using since he was a toddler. He calls his dad a hammerhead so the name has just stuck. ;-)