The Smith family story

When I look into these eyes I see a world of adventure and curiosity. I see unlimited potential and a whole galaxy of love. When I first met this boy he looked up at me from my chest with his deep blue eyes, and it was as though I could see his words 'I love you, and right here, I feel safe..' Now even today instead of hearing Caspian’s words, I see them through his eyes!

Caspian's biggest challenges started around six months of age when he could not and would not try to eat solid foods. At eight months of age I mentioned to our child health nurse the struggle of introducing foods to Caspian. This was quickly shrugged off and I was told to keep trying different foods and to let him eat off my plate. 

At twelve months I was feeling desperate for help and asked my husband to follow me to our next check up with the child health nurse. We walked in with a small list of developmental mile stones Caspian was struggling with however, the main challenge was eating! Caspian was breastfeeding exclusively, our son was missing out on all vital nutrients a one year old needed. Our nurse listened to our concerns and referred us to a child health doctor, finally! 

We were so excited to meet the child health doctor ready for help so our son could eat and be nourished with food. Unfortunately that did not happen. The doctor asked us to put Caspian on the floor with some toys, she watched him crawl around, play and smile. The doctor looked at us and said, "Your son is fine and healthy, I understand parenting can be exhausting, perhaps the mother needs some therapy? Someone to talk to?'' ...

I walked out crying feeling helpless and as though I was doing everything wrong as a mother however, my husband believed in me and knew these problems were not normal. I being an Australian living in Sweden having poor Swedish skills at the time, felt I was ignored however, my husband made sure that didn't happen and wrote a letter to the doctor demanding for more help. 

Our letter of concern was listened to and our son was then sent to another child specialist who examined Caspian. 

From then on Caspian had weekly visits with speech therapy and physiotherapy. And after a few months with the rehabilitation team Caspian was diagnosed with Autism at the age of 2. At 18 months of age Caspian started eating for the first time and by 2.5 years of age he was eating enough to stop breast feeding safely. 

Very soon after Caspian's autism diagnose we were accepted into the Swedish IBT program (ABA). Caspian has truly thrived in this program and has developed amazing skills in communication, imitation and new motor skills. The team we have here in Sweden have been amazing and a huge part of Caspian's success in all his milestones! 

Sadly we had a little turn back in October 2019 when what we thought was autistic stimming behavior turned into an epilepsy diagnose. We noticed Caspian eye rolling months before his epilepsy diagnose, we did ask the doctors about it early however, it was so small it did look like stimming behavior. It wasn't until he had his first drop we took action fast. Our hearts sank with worry as Caspian was rushed in for testing and diagnosed with epilepsy. 

Caspian started medication right away however, the first medication did not help at all. Soon Caspian was having clusters of drop seizures, hundreds per day so we were told to go to emergency to break the loop. 

One medication was introduced and then another... The third reduced seizures a lot however never fully so Caspian was sent in for more tests. They took CT scans, spinal fluid, EEG and genetic testing. All tests came back normal, it was just the genetic testing we waited a few months for... 

In May 2020 our beautiful son received a new diagnose Syngap1 syndrome. Even though this was a huge surprise for us, this new diagnosis gives us answers to why Caspian has such difficult epilepsy.

Caspian is a very happy and playful little boy. He laughs alot and loves cuddles from those who are close to him. Water has always been his favorite everything! Right now water is his relaxation when he has alot of seizures a bath relaxes him and his seizures seem to rest for a while. He also loves the trampoline and he has just recently learnt to jump by himself with the help from his big sister, who is usually teaching him all those fun skills! And another passion of his is dancing and music! Caspians laugh and smile can melt anyone's heart when he dances with you!

Please enjoy this video we made about Caspian.