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Expecting your first baby is always a very exciting time in your life. Having worked at an ultrasound facility, my excitement was met with equal parts of fear of the unknown. Our journey with Sebastian started at 20 weeks gestation when I had an anatomy scan showing a few possible brain abnormalities – shock and sadness don’t even begin to describe all the things we were feeling. After a few follow ups with the perinatologist, we got the all clear and we couldn’t have been more relieved and anxious to meet our baby boy.

20150421_162457Sebastian had a stressful delivery which resulted in an emergency c-section, only to reveal that the sutures of his skull had fused in utero (craniosynostosis), not too long after that he had his first seizure and 12 hours later, another. Our little baby was put through the ringer with every test you can imagine, from EEG to MRI to Lumbar Puncture, trying to find the reason for the seizures. It was during the MRI that we got the big game changer, Agenesis of the Corpus Callosum {ACC}, a diagnosis that would leave us unsure of what to expect for Sebastian. ACC affects each individual so differently that there really is no way of knowing how the brain would adapt to this crucial little bridge that was missing.
By the age of 2 months, Sebastian had undergone numerous visits with Neurologists, Cardiologists, Geneticists and a Neurosurgeon. By 3 months, Sebastian underwent a major surgery to removed the fused sutures from his skull. Any parent would do anything to take on the hardship of their children and in that situation, it was very difficult to see my baby boy with stitches from ear to ear wait out the swelling and fight off the risk of infection.

Four weeks after surgery, Sebastian was fitted with his helmet which he wore for 4 months to help reshape his skull and protect the area that had to regrow bone. All the while, he was starting to show signs of gross motor delay. By 7 months he could sit unassisted only when placed in the sitting position. At 8.5 months he could roll from his stomach to his back, but never from back to stomach. Feeding himself was always challenging and his speech was minimal. Sebastian never crawled but by age 1.5 years, had mastered the bum scooch.

Sebastian had been followed by Infant Development since an early age and as his personality started to show, we could see we had a strong-willed little comedian on our hands. Still eye contact was always an issue during his sessions, loud toys would push him over the edge and his lack of speech was becoming a
concern. He finally started walking at age 2.5. We were thrilled but kept hearing that our child is still not doing alot of what his peers were. A year later, we had our most recent diagnosis of Autism Spectrum Disorder.

Sebastian just turned 4 and when we’re home, he’s our typical four year old boy. His speech is that of a 2.5/3 year old but he’s making progress every day. He loves his alphabet and learning numbers. Disney movies, Sesame Street and Superhero’s get him just as excited as any other kid but his ‘differences’ are evident when he is around other children. He struggles with social interaction but wants nothing more than to play with other kids, so for now he just exists around them and to him that is enough. He chases around them screeching with excitiment and flapping his hands until he gets left behind.   When situations get to loud for him or if he is overstimulated, he seperates from the group and goes off on his own…..generally heading for a door. Trying to redirect his focus away from the door is no easy task and often ends up in a meltdown. It breaks my heart seeing him that frustrated and upset so big parties or outings are brief ones.
Sebastian is already drawn to dogs, so to be able to have a constant companian with him will not only help me in terms of public safety, but would help Sebastian build self confidence, support independance, assist in his gross motor instability and give him reassurance regardless of his environment. Having a dog would allow him a way to initiate social interaction with other kids with confidence and hopefully create an environment where he will be included. He’s our big-little man and we want to set him up for success any which way we can.