I was talking with a mom last week during the IFSP (Individualized Family Service Plan) meeting, about getting her child into a stander now that he is approaching 9 months old. This little boy has increased tone in his extremities with decreased head and trunk control, very limited use of his arms and hands yet. Mom knew about standers from her private therapist; in fact they were also planning to try one in private therapy that same week we discussed standing. Mom was all ready to try one, but wondered what the stander was going to help him do. Read more
Emergencies are called emergencies for a reason, because you never know when the are going to pop up. You should have a plan and be prepared to deal with the unexpected. I don’t quite understand why it’s called the unexpected, you know sooner or later it’s happening, but it always seems to have a way of happening at the worst possible moments. Perhaps it should be called the moment of “Oh crap! Dear God please not now” instead. Oh it’s happening, whether you want it to or not, so you might as well take a few minutes at a time and get things in order for them. What’s on my must have list as a parent, wife, and caretaker to get out of the house? Read more
This week, Jennifer’s husband Bryan shares his recent experience as a father to a child with cerebral palsy enjoying a weekend at the waterpark.
One more time. I can do it one more time, I thought as I stood at the bottom of the stairs. Three flights up was the entrance to the water slide that we had just come down. It’s the only one he can do because we all ride in a raft and I can support Roa, who now stood in front of me squealing with joy from our last ride. Vicki, my sister in law, and Gunnar, my younger son, waited patiently. “Are you sure you can do this again?” Vicki asked. “Yeah, just need a minute to catch my breath”, I replied. Read more
So, let’s start this off with a nice light discussion of psychosocial issues.
I’m a big fan of Stephen King. Not because I’m a horror junkie, or because of any psychotic tendencies or mental illness that I’ve experienced following the trauma of spinal cord injury (side note: I acknowledge the unfortunate reality of this for some). Rather, I’m a proponent of, and relate with, the terror-evoking author’s acknowledgment of life’s yin and yang. Read more
I have been in LaLa Land. Completely avoiding all things CP. Read more
Ellie was born March 4th, 2015. In my gut, I knew something was wrong throughout my whole pregnancy. It didn’t matter that ultrasounds had showed she had a heart defect. It didn’t matter they showed she had clinodactyly, or slightly thickened neuchal skin fold or thickened skin over her nasal bone. None of this did anything but make my pregnancy more stressful and my marriage more frustrating. My husband didn’t have this gut feeling. He didn’t have this insane urge to make everything in life perfect to prepare for disaster. People say these tests help ease your mind so you know what to expect when your baby is born. Well, it’s just not true, at least not for me. I didn’t want to know these things. I wanted to celebrate my pregnancy and that I was growing and nourishing a new life the best that I knew how. I wanted to appreciate my husband for all he does instead of be angry at all he isn’t doing. As it turns out, there was something wrong, but most likely it had nothing (for the most part) to do with all the soft markers on ultrasound photos.
People often tell me that Luke and I are doing a great job raising our children given their disabilities. This is extremely insulting as a parent. My children are special as are all children. My children are not different, but they are children with unique needs as well as abilities. People ask how we have managed to raise respectful well behaved kids given their conditions and ours. We are a special family, not because of special needs, but because of a special love. I believe that having a disability or illness can make you appreciate every blessing in life more than before, and we all need to count our blessings. I also believe children are life’s biggest blessing and greatest teachers. Children are born innocent, without expectations, without hate, and without entitlement. You need very few things to raise empowered children and none of these things cost any money. You need love, determination, patience, and most importantly the ability to express your feelings. These things apply to all children! We have plans of raising Olivia with the same techniques as we have with both of our older daughters who happen to have special needs. Read more
Warning: This post contains information about sexual assault that some readers may find disturbing. Rates of abuse are higher among those living with disabilities. In an effort to raise awareness about this very serious issue, Jessie has written a special series on sexual abuse that will be published over the coming months.
Sexual abuse remains the number one underreported crime in our country for a myriad of reasons. I will break down the main causes as to why this heinous crime remains unreported. Read more
Don’t get my wrong, I love my parents. I just don’t always love having them around, especially post-disability. Read more