ACD

11Aug 2020

Education is one of the key parts of our mission here at the ACD. This “Science Explained” blog post gives a brief overview of a topic near and dear to many of us as CCDS parents: what science and psychological theory say about what therapies work for our kiddos related to their behaviors. The ACD recently held a webinar focused on supporting parents in the CCDS community in regards to challenging behaviors.  I’m not sure about you, but we have seen an increase in behaviors the past few months in our house!

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15Jun 2020

“School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t answer him, he’ll just keep going.   Continue reading

02Jun 2020

My son recently said my name for the first time. I don’t mean he called me Mommy. He says that about a hundred times a day, even when he gets a response. He said my actual name. Continue reading

19May 2020

When it became clear that I would be caring for my son into his adult life, I knew that I had to make sure my body and mind would be ready for that. I knew I had to be as strong and durable as possible. Continue reading

06Mar 2020

The following is our journey into using Medical Marijuana (MMJ) with our son who has CTD, autism, and epilepsy. For those of us in OH, this is a new option in the treatment of seizures and most of us have little to no experience in the medical use of this product. In talking with other families, I realize that there’s a lot of confusion, stigma, and fear, but also curiosity, surrounding the use of MMJ in the treatment of epilepsy and other conditions, so I thought I would share what I’ve learned thus far on our journey with MMJ. Continue reading

20Jan 2020

Pictured: Dr. Sonja Sucic from the Medical University of Vienna presenting on pharmacochaperoning at the Creatine Deficiency Workshop in Rotterdam in September 2019

Being a CCDS/CTD mom, I understand that it can be very easy to put a huge amount of hope in the idea of prospective treatments. The exciting news is that it’s not just a cliché to say that we can each make a difference. Our individual participation in the research process is vital and necessary to help researchers in the quest to find a cure for CTD. There are researchers around the world working on innovative new ideas for therapies that could really work to help our loved ones. Providing access to patient data is in our hands as parents and caregivers, and it is not an understatement to say that if we don’t do our job, the researchers can’t do their jobs. Continue reading

11Nov 2019

When I was faced with the CTD diagnosis of my son, who is now 10, I felt a huge, monstrous, feeling of overwhelming and it never went away. None of this is his fault, but the responsibility, the volume of things that needed to be taught, the learning, the management of appointments, the therapy, medication, and paperwork was a lot to handle and it ultimately fell on my lap as his primary caregiver. Continue reading