I can’t even begin to count the number of times someone has said to me “I’m just mom, I don’t know my rights at the IEP meetings.” It’s time for that to change! I want you to own your seat at the IEP table as a parent. YOU are the only team member who is never going to change, you are the expert on your child, you are just as important as everyone else in that meeting. Let’s own your role as being a P.A.R.E.N.T: P- Head into every meeting…
Five days a week we rush out the door. There’s a lot of yelling, some giggles, and usually a sigh of relief when we see the bus coming down the street. Five days a week we put our non verbal son on the bus and we trust with everything that we have that he will be well taken care of, loved, and included. In May during field day Whit’s para of almost two years told us she was leaving. They may have had to sneak me out the back wearing…
My son Stalen is seven, autistic and non-speaking. He was diagnosed when he was 21 months old. He has a feeding tube and an ileostomy. I’m sharing my hard here as a parent to a child with complex needs but I know that it is hardest of all on him. He lives it every single day. HARD. It’s one word that brings about so many judgments. It highlights the challenges, struggles and encompasses all the feelings. From the moment I stepped foot in the autism world with my son I…
I talk about many aspects of my son’s and our lives, but I don’t talk about the rest of his family as much as I should. On average there are 10 different people, including ourselves, coming and going in my home in a week. They’ve become family because they are interwoven into my child’s life and my own. They walk into my home as they would their own. Sometimes they know where things are better than I do. Ok, usually. Like that mini screwdriver. They know to go into the…
I am a mom. I am a special needs mom. I am a wife. A sister. A daughter. An employee. A friend. An advocate. But who am I? Really? Strip away the titles and what is left? What do I enjoy doing when I have alone time? What makes me feel good about myself? What do I feel best wearing? What snacks or food do I prefer? The realization that I don’t know any of this anymore hit me extremely hard recently. I feel lost. Being a parent your life…
Harper was diagnosed with Autism at age two and we were told by doctors and therapists that keeping a routine would be best to help her learn and succeed. That routine has become so important to Harper. She has a memory like a trap and it’s not just the daily routine that she craves but also the annual routines. It is fall and when the leaves start to change and the weather starts to get cooler she knows it is time for the pumpkin farm. It has been part of…
One of the biggest fears I have as our eight year old son, Sully, gets older is that people will look into his big green eyes and think that he is violent and that they should be afraid of him. Take a moment and think how that would feel as a parent. You see our son has severe ADHD, Oppositional Defiant Disorder (ODD), Sensory Processing Disorder (SPD) and High Functioning Autism. Have we feared he may harm himself or others in our family not meaning to? As much as it…
About two weeks ago, we were driving home from somewhere, and Benson realized that his birthday is quickly approaching. His first question was, “Where should I have my party?” I answered by asking where did he think would be a good place for a party? He thought on it and suggested a local trampoline park and and then suggested that it be a Minecraft party. I tentatively said ok. Then I started doing the thing every autism parent knows all too well…the strategizing, the figuring out how to adapt or…
The past couple of days have been tough ones. A triple dose of my daughter Casadee’s struggles with socializing and anxiety. We had planned a dinner date with her ‘boyfriend’ and his family so we could give Manny his birthday gift. Casadee had been looking forward to it and talking about it for days. We know plans with Casadee don’t always work out because of her social anxiety, so we are playing it cool and not saying much about it. Little reminders here and there. We’ve learned you can’t spring…
It’s that time of the year again, friends. And I’ve got a lot of feelings. This Halloween, please acknowledge and keep in mind that not all individuals will “look the part” that you’ve dreamt up, fall under the imaginary age bar that you’ve set, or ask verbally for their treat. They’re not lazy. They’re not ”spoiled”. They’re not ”ungrateful. They may be overstimulated. They may have sensory issues. They may not communicate with words. Eye contact may turn them inside out. They may be learning how this holiday will look…
