Posts Tagged ‘severe autism’
My Girl had Gotten out of the House
I am one of those people, even before kids, but even more so with kids, I immediately think of the worst that could happen in every situation, and then I try to do everything humanly possible to keep those things from happening. I know lots of mom’s and people like this, and then I have friends who are so laid back about things that I wonder how many milligrams they are taking a day! I absolutely have days where this instinct is less active than others, but for the most…
Read MoreFinding Alone Time, Tis’ So Sweet
I find so much joy to be able to be my sons caregiver. Somedays it can be emotionally, physically and mentally draining, especially if I am not intentional about assuring that my needs are met. And one need that I am intensely aware of is the need to be alone sometimes. Let’s be real for a few minutes, as Jake’s mom, I am eternally exhausted. I’m not gonna lie. I pour my everything into his well being, day in and day out. It is the most rewarding and demanding “job”,…
Read MoreHopefully Hurting
Another time comes that I must leave you behind so you can continue working on getting better; that raw pain in my chest returns, feels like I’m suffocating, like I can’t breathe. Sometimes I think my heart could actually break. It’s a stabbing pain that with each breath is more intense than the last. It feels like I’m carrying a ten thousands stones in my bones that with each step gets heavier. A million little things race through my mind. Razor blades cover my throat that I feel small cuts…
Read MoreSeeing their Future
These two. Brothers. Cooper was barely two when Sawyer was born. I had so many ideas of what their relationship would be like. So close in age. I thought they’d be best friends. I thought they’d play nonstop. Like so many parts of life…what I imagined didn’t happen. Their relationship has always been unique. Lots of ups and downs. Lots of confusion for Sawyer. Cooper is mostly oblivious to him. They rarely interact. They seem to lead separate lives but do acknowledge that the other one seems to live here…
Read MoreUnderstanding Self Injurious Behavior
To the autism families that are just learning about Self Injurious Behavior (SIB): I know you’re scared. I know you’re sad. I know you’re mad. I know you’re confused, so confused. Guess what, that’s ok and you’re not alone. We began our journey of SIB on August 14, 2016 my son was 4 years old. My son Deegan was diagnosed with Autism clinically (ADOS) at 22 months old, on September 18, 2013. We began to see “signs” when he was just 13 months old and he began early intervention, speech,…
Read MoreOur 2018 Year in Review
A year ago we had a different life. We were living in a different house. We had two children…not three. Cooper had just turned seven. Sawyer had just turned five. And we had just found out that we were pregnant. This site was smaller. I had 60,000 followers on Facebook. Then I had a super viral video. I received my first round of online bullying which opened my eyes to how ugly the world of the internet can be. And today we are 430,000 strong. Cooper had six months of…
Read MoreNo One Talks About Group Homes
I have this recurring dream. I don’t have it very often, but I have it enough to recognize it through the years. In it, I’m alone in a vast ocean. The sea has picked up and I’m treading water with my head barely above the waterline. The waves occasionally crash over me and I come up gasping for air. There is no thought involved in this, I just tread water automatically with a tinge of desperation, struggling to keep my head or sometimes even just my mouth above water so…
Read MoreSanta did not Bring my Nonverbal Son’s Voice
Every time I go through a “grieving phase” of autism I always think it will be my last, or at least I always hope it is. However, emotions are fluid, and thus like waves in the ocean it never dies. I find that holidays are always a stressor for the grieving process. It truly is hard to let go of what you thought your life would have been like prior to the diagnosis of autism. I think it’s hard for people who aren’t going through this to understand that. It’s…
Read MoreWe are Just in the Thick of it Right Now
Jamie and I have been talking a lot lately about the future. I think it’s because we are in the thick of it right now. We have three kids. Three young kids. All boys. Busy, busy boys. Busy schedules. Sports. Play dates. Therapy appointments. Families. Friends. Obligations. Dogs. A constantly messy house. Mounds of laundry. Careers. Trying to make money. Pay down debt. Sleep deprivation. We both want to get healthier. That means trying to eat right and get to the gym. We both want to find balance. It’s like…
Read MoreLooking to 2019
2018 has been one for the books. So many positives have transpired. I woke up to a beautiful smile this morning. Tap, tap! In the world of special needs, just like in typical parenting, when our children are thriving or, “gasp,” getting ahead, there are often those who are not cheering us on. Have you ever felt guilty because your child is moving forward and maybe a friend’s child is not? I get it, I really do…most likely I have been that mom too. One of my goals for 2018…
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