A Sibling’s Hero

A Sibling’s Hero

There is not much that can come between the bond of siblings. Many parents facing a life with a special needs child wonder how it will effect their other typical children. What will their life be like having to lend an extra hand, be extra patient, maybe not do as many things and go as many places as children whose families do not have a special needs child. Should they even have more children after their special needs child? My children are very young, but I am holding closely to the idea that they will benefit greatly by having Dylan as their sister. The amazing things that special needs brings to our family will hopefully far outweigh anything that they can’t do, or can’t have. I hope that my children will be more accepting and more patient with people who are different from them and that they will be the first to reach out and offer to help. All because they got this example withn the home, from day one. I cherish the examples that I see about how much love a child, especially an older child, has for their sibling. I have shared stories about it here before and I will continue to do so because it’s yet another thing that gives us hope. A friend recently shared a short essay her daughter Avrianna (Av) wrote and after several days I could not let it go. It was something I needed not only my friends to see but other special needs families who worry about the impact a special needs child will have on their other children. Here...
Wait and See

Wait and See

Because I am so open about Chloe’s conditions via blogging, Facebook, Instagram, at the store, at restaurants, you name it… many people reach out to me when they have a new diagnosis for their child, or no diagnosis for that matter. Friends of friends have been referred to me for questions and support on occasion. I’m glad to be of any help I can, though it’s very limited. One time in particular, I remember corresponding quite a bit with one mother whose experiences with her child reminded me a lot of our experiences of first learning about Chloe’s condition and all the frustrations we had during that process. This sweet mom kept asking me what to expect. “Will she do this? Will she do that? Will I be able to do this with her? What will people think? You don’t think she’ll need a wheelchair, do you?” I found myself giving the response that used to make me cringe. “You’ll just have to wait and see.” Ugh, I remember thinking that was such a cop-out answer from doctors. I thought for sure they knew and they just didn’t want to tell me the grim truth or were afraid to give me the hope I was seeking. But with a few years of wisdom (provided by Chloe) and motherly experience under my belt, I realize it’s the truth. You just don’t know. No mother really knows those things about each of their children, but especially those children with special needs. And so here I am seven years later echoing those words I used to dread yet heard so often. “Wait and see.” To which I...
Are We Out of the Woods Yet?

Are We Out of the Woods Yet?

It has been over 7 years now of asking the question, “Are we out of the woods yet?” To doctors, to my spouse, and as an internal struggle I’ve kept hidden at times, I have had this constant nagging question. When can we just get settled in to what our life is and not have something we are trying to figure out, fix, and/or deal with? She was 13 months old when I read the official diagnosis of cerebral palsy. I saw it on a consultation report from one specialist to another. That probably isn’t the greatest way to receive a diagnosis like that about your child, who also happens to be the center of your universe. But that was how it happened. I’m sure the report also included her history of infantile spasms, a debilitating type of seizure that had been controlled after 6 weeks of steroid treatment. The report likely indicated that she had global developmental delays (non-mobile and poor fine motor skills) and bilateral exotropia (wandering of both eyes). Those are her main diagnoses. However, no report could sum up or label who she really is and what the world is like with her in it! So let me attempt to do so now. Chloe was born just 10 days early. They induced labor because I had gestational hypertension. Nothing appeared to be out of the ordinary with my beautiful little newborn. In fact, the pediatrician told me she appeared to be the healthiest baby in the nursery! She sure looked perfect to me! She was my first child so I wasn’t in tune with what a “normal” newborn looked...
Sensory Blankets for Sensory Processing Disorders (DIY!)

Sensory Blankets for Sensory Processing Disorders (DIY!)

I found a great DIY online for a weighted blanket and just had to share! Weighted blankets are used to help with Sensory Processing Disorder (SPD) which is fairly common with children who have been diagnosed with ADHD, Autism among many other diagnosis. From the SPD Foundations website – “SPD is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.” Many parents and therapists swear by weighted blankets to calm children with SPD. The theory is that the pressure is comforting and when weight blankets are used it can release Seratonin, a happy, calming chemical. Seratonin can also be converted by the body to Melatonin and can help children sleep. Along with being a sleep aide, many children respond well to having a weighted blanket across their lap when they need to sit still, relax and focus. Any special needs parent will tell you, when their child is in need? Anything is worth a shot. I found this great online tutorial for a weighted blanket. It requires a sewing machine, but it doesn’t look like you have to know much about sewing to be able to do it. (I think...
A Very Tubie Thanksgiving

A Very Tubie Thanksgiving

Mmmmm Thankgiving… It’s coming! And it brings one thing to mind. FOOD! Lots and lots of food! My mom makes the BEST oyster stuffing! I know, sounds yucky right? WRONG. Totally wrong. It’s so good. And turkey, and cranberry sauce, and potatoes with lumps in them. YUM. Does food come first to mind for you too? YUM again! (I can’t help myself!) To a tubie, Thanksgiving looks entirely different. No food allowed? Well this certainly presents a challenge to tubie families. How to make a holiday that revolves primarily around food special to someone who can’t have it? This is the post for you! Here are some family Thanksgiving traditions we liked, and none have to do with food! Watch the Thanksgiving Day parade on TV – It is so fun to watch the balloon handlers walk those giant balloons along the streets of New York! My kids love naming each balloon and singing along with the floats that have music. It’s a fun family tradition and there is something int he parade for all ages. Your Own Turkey Bowl – Good old family football. Bundle up, grab some friends and family and meet at a park for some football. You won’t be alone, it’s kind of fun to drive by parks on Thanksgiving and see so many people outside playing together. I hear some people also watch football on TV as a tradition but this is far less appealing to me personally! Turkey Crafts – Last Sunday my three year old came running in the house after church with papers in his hands. “Mom! See my turkeys! They...
Very Special Halloween Costumes

Very Special Halloween Costumes

Some people go all out with their Halloween costumes. (I try to just skate by but the kids won’t let me, you know how that goes!) When you have special needs finding or making a costume is especially hard… or especially FUN! We scoured the nets and found some of the best special needs costumes EVER. Here is your special needs Halloween eye candy!   For photo cred, all photos are the owners, I just searched, found some AWESOME ideas, and had to share! Kudos to these...