This November I am thankful for the aide that made a difference in my son’s life. The aides that work with our kiddos definitely don’t get the thanks they deserve. A little bit about our family…My husband Gary and I have been married for 12 years. We met working as Firefighters. I am now a stay at home mom and advocate for our son Andrew. Gary is a full time firefighter/paramedic along with a councilperson for the Village we reside in. We have twins who recently turned 9 years old.…
I would like to honor the amazing therapists at Accelerate Early Intervention. They listened to me when no one else did. They believed in my sons abilities and they nurtured and cared for both of us like family for three years. I stumbled into their small facility teary eyed and scared when my son was around 20 months. Owen began therapy with them at age 2 and spent 10-15 hrs a week with them for 3 years. They became an extended family. They never gave up on Owen and were…
“Call Baapa. Call Baapa. Call Baapa. Call Baapa. Call Baapa.” Conor repeated this over and over and over (and over and over) while he paged through a book on the living room floor. He was stuck. This has started happening more lately and it always breaks me. As I stood there silent I couldn’t stop the tears from rolling down my cheeks again. I just wish his brain worked right, the thought swept over me again for the 100th time that week. Conor was diagnosed with Fragile X Syndrome shortly after his second…
My husband and I are, in a sense, new to this role of being special needs parents. Both of our children have fragile x syndrome and although our boys were born with this genetic condition, we didn’t know how significant our 2 year old son’s delays were until this past summer when Caleb’s genetic results came back. A few months after receiving Caleb’s results, we got news of Ben’s diagnosis as well. Both of our boys have full mutations of fragile x syndrome which causes them to have significant developmental…
When my daughter was first diagnosed on the autism spectrum last year, I clung to the concept that it was no big deal—that it was “mild,” and she was “high functioning.” She was going to be fine and this was not going to interrupt our lives because she was so smart and how could that happen? But looking back, I now wonder—what does that mean? What is “high functioning autism (HFA)?” Well, it’s not a medical term or recognized diagnosis from the DSM-5 manual, it’s just how some parents prefer…
Look at this smile. He’s back. We made it through another regression. Another loss of skills and spike in behaviors. This one lasted nearly two months. Which in our autism world is actually short. I don’t know what caused it. Maybe getting a new sibling. Maybe the ear infection he had. Or a full moon, new therapist, or change of season. I’ll most likely never know. That’s our autism world. A mystery. It’s constant ups and downs. Gaining skills. Losing skills. I call it a roller coaster. But we made…
Today, I brought my new baby in for his one month check-up. I asked all my questions and found out that he is as perfect as can be. All 12 pounds of him. As I breathed my sigh of relief, I asked the question I was too afraid to ask when Cooper was this age. ‘When do I worry about lack of speech?’ It felt good to say it out loud. This time I’m not afraid to ask questions. In this video I reflect on the days before Cooper’s diagnosis.…
When my autistic son was two and three I remember thinking….at least he can blend in. He’s so cute that no one will ever know he is different. Or that he has autism. For some reason that mattered at the time. I think it was a comfort thing. Now, he is almost eight. And he yells, runs, rolls, crawls, flaps, eats anything he finds on the ground, and so on. He has licked strangers. He has eaten snow of stranger’s boots. It’s now apparent to me that we will never…
“… he isn’t a sad story.” Those are the words that changed my world. I always dreamed of becoming a mother. There was nothing I wanted more in life. Boy or girl I didn’t care, I just wanted a healthy little baby to love. I remember the day we found out we were having a little boy. My husband Josh was over the moon happy, talking about all the things they would do together. I think a part of the excitement came from him not growing up with his father…
I chose a life of motherhood, but this motherhood chose me. A different one of sorts, a special needs one. And because of this, I have needed more help along the way. A lot more. My son Noah wouldn’t be where he is today without our village, truly. Each person we’ve encountered on this journey has played a crucial role in our lives, and I am so grateful for each and every one of them. There is one person in particular that I have been exceptionally thankful for lately, and…
