It takes a lot to fire me up and anger me to the point I lose sleep over a nasty remark or unsolicited comment about my parenting. But, when I received the below message regarding Spelling to Communicate (S2C), I threw my phone and screamed a few choice words in the air: “As a parent…
My son Skyler is on the severe end of the autism spectrum, is non-verbal and suffers from Crohn’s disease. He is one week away from turning 20-years-old and I’m not prepared. I recently sat down with Skyler’s case manager, who I absolutely adore, for our annual meeting to discuss the waiver service options and hours…
Letting go is hard! Particularly when being in complete control is my love language! You see, as much as I hope, pray & dream for my nonverbal, autistic 19-year-old son to be even minimally independent, caring for and managing his every need is all both of us have ever known. I know he is capable…
I’m fine. Such a conditioned response I’ve used for the entirety of my life no matter the situation. Served cold food that tastes dreadful – my response to the waiter when asked about my meal is always the same, “it’s fine, thank you.” Someone terribly hurts my feelings or I’m physically injured due to no…
My 19-year-old son has Ulcerative Colitis, non-verbal autism, complex needs and global motor difficulties. He has been dismissed, underestimated and deemed incapable his entire life by those who are trained to support, teach and encourage his growth and development. I attended a meeting at his autism center yesterday with the understanding we would be discussing…
My 19-year-old son has Ulcerative Colitis, non-verbal autism, complex needs and global motor difficulties. That description is getting harder to repeat … not because of the various diagnoses but based on the heavily uncertain future for adults on the spectrum, the sheer mention of his age sends me into panic. With the holidays now a…
One of the most overwhelming concerns a special needs family faces is the fear of isolation from our communities. We must always weigh the decision whether venturing out will be worth the anxiety or misunderstandings and judgement from onlookers should our child be triggered and their behaviors become troublesome. While I’m a big believer in…
Understanding the inner workings of the body and mind is extremely difficult, but as the parent caregiver of a non-speaking young adult diagnosed with autism and Ulcerative Colitis, I feel like the last 19 years have been an endless game of charades. Although there are plentiful books on the subject, the early phase of motherhood…
I’m in a funk – a particularly dark head space that is centered around jealousy. I would normally suffer in silence and be ashamed to openly admit my truth, but I think it’s important to be honest and share because I suspect I’m not alone. We’ve come so far in many ways with Skyler’s communication…
There is no backup plan when you have a child with profound needs, and no one is coming to give you a break — even a break to be a competent employee. I’ve questioned whether I should quit working and focus solely on my 19-year-old son Skyler’s needs; however, the minute I pose the question,…