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.