Turning 2: Autism & SPD
January 30th, Caden was observed & seen by 5 Doctors over 4.5 hours. At the end of the longest day of Caden’s life so far, we received the conformation of ASD ( Autism Spectrum Disorder) diagnosis. Even though it was what we were expecting to hear, the overwhelming feelings begin to seriously hit. Now we wait for the full reports to come back, along with what treatment route will best fit Caden at this time. We are still on the waitlist for the Lynn Center & start date is aimed for mid May. Caden will have Speech Therapy weekly beginning February 19th.
February 1st, Caden had an in home Occupational Therapy evaluation to see if he qualified for services, see more in depth what gross/fine motor skill are at, & to look for sensory sensitivities . After answering what felt like another million questions, Caden not only has some motor delays, he also has sensory issues within all senses. Caden has SPD, Sensory Processing Disorder. The Occupational Therapist defined Caden behavior as “ Sensory Seeking”. He is seeking input.
What is Sensory Processing Disorder ( SPD)?
Sensory Processing Disorder ( SPD):
Originally called Sensory Integration Dysfunction, is a neurological disorder in which the sensory information that the individual perceives results in abnormal responses. Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves.
Once we receive the full report from the Occupational therapist, we will then be incorporating Occupational Therapy appointments into our new weekly/monthly routine. In the mean time we have been given some books to add to our library about both ASD & SPD, followed by suggestions of activities & things we can buy/make to help Caden grow in his speech, fine/gross motor skills, also help get him the input he needs, as well as ways to help soothe & calm him when overstimulated.
With all this happening rather fast since the new year started, both Maggie & I have had to resign from * her from her 2nd job and myself from my part time job* jobs. Caden sleep patterns have changed yet again, and although he has never slept through the night, it has gotten worse. Sleep disorders are common among children/adults on the spectrum. We have yet to have any sleep testing done, next on our list of “ MUST “ dos is an appointment with Neurology. * Which is schedule for the end of February *
Needless to say with everything going on Maggie realized how important this time with Caden is & chose to resign. She still works her butt off M-F for an amazing & understanding company. Without their support & understanding this process would & could be more stressful. And as much as I was enjoying the transition back into the work life, with the little sleep I was getting to all the added challenge, I physically & mentally could not give anymore . We agreed as Moms ( and long with the repeated advice of the Doctors) that Caden mental health ,along with what lies ahead for us as a family comes first. Once he is situated & comfortable with everything and on a good routine, then I can go ahead and go back to work.
February 29th, Caden will undergo a EEG to check for conditions as seizures/epilepsy. Seizures and epilepsy tend to be a higher risk in children on the spectrum. One symptom or red flag to watch for is starring spells. I had heard this, but assumed he would have to be starring off for more than a minute for it to be of concern. I was wrong, 10 to 20 seconds is all it takes in a child Caden’s age or younger. Looking back he has had many spells, over the last year and unknowingly I assumed he was day dreaming. To say I didn’t feel a punch in my gut of pure guilt as a mom would be an understatement.
However, despite all that is piling onto our plates, there is always a positive side. We are on the right track to getting Caden the best treatment to gain skills to grow & thrive. Everything we are doing is and will continue to pay off. With this last evaluation on the 1st, the therapist said Caden had made significant improvements in some areas since his first in home evaluation on December 30th, 2019.
We continue to work everyday with Caden along with continued reading, researching, and good old trail and error. We are so grateful for the amazing support , love, prayers we have received from both near and far. We are so thankful and blessed with this amazing little human, words cannot describe the love we have for this guy. Our goal as Moms is to make sure we do everything possible to make sure Caden thrives in all areas of life, and I think we are on the right path to do so. Our goals as parents is help educate those around us about ASD and SPD in order to spread awareness that will lead to more acceptance and kindness.
Caden does not see or feel the world as we do or the average child, he does not see our world through “rose colored glasses” , he world is more of a kaleidoscope. Everyday is different, some more challenging than others, and some down right HELL. The feeling of defeat is heavy and at times almost breaking. However, when Caden laughs, smiles, shouts “ WOW” ,or his colors/numbers, the love that just burst all the heaviness of the day away. And it is always enough to keep pushing and to keep going.
Maggie and I thought we would be the ones teaching Caden about life and what it has to offer, but we were wrong. Caden is the one teaching us about all life has to offer and the beauty of it. And when we listen and are lucky enough to get a glimpse into the world as he views it, it is truly breath taking. Our hearts grow 3 sizes bigger each time with more love, appreciation, and motivation to spread more understanding, compassion, and to make the world a better place. So we will continue to share our Journey with those we love and around us. We love and appreciate our village both near and far, Thank you.
Fun Facts:
April 2nd is Autism Awareness Day * Light it up Blue, wear blue*
May 2nd, Autism Speaks Walk in San Jose
Momma D’s Blog 