I talk about this day so often. He was TWO YEARS OLD! He is legally blind. They said he would struggle to read, write, run….hell-they said he’d struggle to do tons of things. Steve and I nodded our heads and ignored their opinions about our sons’ supposed limitations. We promised each other our boys would decide what they could and could not do. He was an active, independant reader at age three. He insisted we take his training wheels off at age four. He played T-ball at age five. So for all of you out there being told no or can’t or probably not—-just remember-only you know what you’re truly capable of. So screw anyone who tries to hold you back!!!! #provethemwrong #albinismisbeautiful #jojoforpresident #proudmom #neversaynever #betruetoyou
After a long but rewarding February Staycation with my boys I found myself reflecting on how far we have come as a family. Just a year ago, spending a week at home with my boys would have sent me into a state of anxious distraction. For those of you who do not know, my two boys have a history of not getting along–like AT ALL. So much so that we hardly ever do activities together as a family. It is mostly because each have sensory processing disorder as a result of their low vision which is a part of their albinism. Basically it means they receive information from the world in a different way than fully sighted people. Things sound, smell, taste, and feel differently than they do for others. One son takes information in more intensely while the other son processes the world with less intensity. Its like this-one son seeks out play that involves water, music, dress up, and technology while the other will only play with cars. As you could imagine, this, along with typical sibling rivalry, has lead to a chaotic family environment that is always engulfed in turmoil. In the past I have gone to great lengths to ensure that at least one child had plans each day of vacation.
In the beginning I was stuck. I did not know enough to effectively help my children and I was just too overwhelmed to do anything about it. I felt myself spiraling into a dark hole of depression and anxiety, always throwing my hands up and lashing out at the world. As is often the case, I came to a place of decided determination after a tragic loss. I would not waste another minute being a victim. After nearly two years of weekly therapy sessions and a proper medication regimen, I had enough tools to separate my feelings from my actions. I learned that I still deserved to feel my feelings but no longer would I allow them to keep me from helping my children.
What a lot of people don’t understand is that Sensory Processing Disorder, or SPD, often affects children until they are resensitized to respond appropriately. It is also a spectrum disorder which basically means, one person with SPD may over-respond to the touch sensation and find clothing, physical contact, or other sensory input as unbearable. Another might under-respond in reaction to stimulation. It is amazing to me how many childhood “quirks” actually end up being a behavioral result of SPD misunderstood. This is why it is so important that we educate ourselves about the intricate aspects, triggers, and therapies associated with SPD.
Understanding Sensory Processing Disorder has allowed my husband and I greater access into the world’s of our children. It has provided my sons with the much deserved patience, understanding, and praise they were lacking as a result of our lack of knowledge
While society’s understanding of SPD has skyrocketed in recent years it is still a very misunderstood disorder. Children are often considered rude, bossy, (one of my sons was actually described as bossy in his IEP) inattentive, annoying, or even confrontational as a result of the behaviors they exhibit due to SPD.
Our school systems are working hard, in most cases, to train their educators in the specifics of this disorder. That being said, finding a public elementary school whose occupational therapy (OT) program has a sensory integration (SI) approach is not common. I am sad to say my own sons’ school does not have one. They no longer receive OT at school as their therapist admitted she did not know what to do to help them. With the sensory model, well-trained clinicians will effectively combine an Integrated Listening System or other complementary therapies with Occupational Therapy and Sensory Integration techniques. Unfortunately, these are the type of services that are also often denied by insurance making it incredibly burdensome for families to access the services from properly trained therapists outside of school.
What is a family to do?
Well, in our case, we were eventually able to escape the trap of our defeated state of “overwhelmdome”, though it was not easy. After leaving my job as an educator so I could care for the boys money was pretty tight. I had to educate myself as efficiently and quickly as possible. I scrounged up enough money to pay for some private OT sessions that integrated the SI approach by having multiple yard sales and purging as much as we could. Like any parent, I did whatever I could. I sat in on every session and took notes. I asked the therapist to point me in the right direction and share any reading material she felt would help. That was just over three years ago. I still have so much to learn. But, thankfully I have learned enough to begin making changes that provide my children with the training and tools they deserve. In turn, we have begun to experience more joy and compassion and less fear and anguish.
So after years of stressful vacations and avoiding gatherings with friends, we feel comfortable enough to venture out into the world. This does not mean that we have it all figured out. I don’t even know if that is possible. What it does mean is that we have committed to learning and growing and listening to the behaviors and words of our children. It means that we work to educate our family and friends about the things that affect the behavior of our children. It means we judge our children and ourselves less. It means we share our journey in hope that it may help just one other family understand that SPD is not about blame or behavior. SPD is just a different language, one that we should all learn.
If you are interested in learning more about Sensory Processing Disorder check out the links below. They are chock-full of helpful information. Also, please feel free to contact me at firstname.lastname@example.org.
Source: Let’s Do the Time Warp Again
Source: Fighting for Happy
Molly, you bravery and level of unconditional love is unmatched. I love you so big!!! Happy re-birth day. ❤
It was early January, 2012 and we sat in her hospital room in the deepest level of isolation she had ever been in. Only one adult was allowed in the room with her around the clock and no one under the age of eighteen. We were allowed one visitor at a time but with our distance from home there were never many more than that anyway. She had been given high doses of chemotherapy beginning on Day -7 to kill nearly ever cell in her body. Unlike regular chemotherapy which left some cells behind, this killed everything. In the weeks to come she would shed her skin, her fingernails and any eye lashes she had left. But for today, today was Day Zero and she was finally getting her stem cell transplant. On the Transplant Floor this day was celebrated as her Cell Day. They hung a birthday sign above…
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If you are a mom of children with unique needs there is also a pain that you carry around with you-everywhere you go. The pain is so deep and such a part of your soul that others do not always recognize it for what it is. It is a mixture of our own pain as a mom and as much pain as we can possibly hold for our children, children who often can not explain or express their pain effectively. This pain effects our every decision-what food to buy, the type of lighting we use, the clothing we buy, what we read, watch, and listen to.
The thing is-it’s not a pain we want or need sympathy for. That would feel as though we were disrespecting our child or complaining about their needs in some way.
I struggle when trying to describe this part of my mommy journey. Thankfully a friend of mine connected all of the dots for me. I hope it resonates with you as it does for me.
Heather- Your sons are blessed to have you, a dedicated, intelligent, curious mom with a great attitude. You are not venting or complaining-things that all mom’s need to do! The difference here is that you have described, in this case, the feeling of saddness-as not just your own, not just his, but as yours. Together you feel your way through it all and together you will enjoy a magic no one else could come close to understanding or feeling the way the two of you feel it.
Read Heather’s thoughts below and enjoy the profound simplicity of her heart.
Look. It’s no secret, my mind does not run in a linear fashion. Instead my thoughts travel in and out of continuous loops. Sometimes my fierce focus is accompanied by productivity. However, confusing frustrating times of exhaustion and sadness are never too far away.
This article spoke to me because it does not judge. I found it motivating and meaningful. Personally, number 3 and 5 are my favorites. What about you?
12 Ways to Stop Wasting Time and Get More Done;
ADHD Strategies can Improve Your Sense of Time
So in honor of ADHD Awareness Month, I share this article to inspire you all to be on time more. It boosts your mood and self esteem exceptionally. I know first hand!
Let’s do a social experiment. Keep tallies of each time you’re late in October then in November and than Finally in December.
Winner gets a two hour binder binge and reorganization. With me AND,➡️With supplies!!! Who’s in!?
I LOVE this more than you could ever know!!! Thank you Nanea Hoffman! You rock as per the usual.
This just speaks to my motto. Figure out what fuels your soul, and then get more of whatever that is into your life. I do it gradually, in 20 minute chunks. #202020 and that my friend is how you #FindYourMagic @sweatpantsandcoffee I just love the way you think! 🌟💜🌟💜Can you identify what fuels your soul? Another friend of mine recently said that money was not her currency. It really stuck with me. We all need the time to be still with ourselves to figure out what matters to us, what makes us tick.
We tend to get overwhelmed and shutdown thinking we it is all or nothing. You know the routine—” Ifeel better when I workout and eat better.” Turns into, “oh god I can’t get up at 5 everyday and how am I going to get the food shopping and prep done. There is no time!”
Sounds familiar, Right!?
No wonder What I’m saying is we all need to be patient and kind with ourselves.