You know that awkward silence in a conversation where you wonder if they heard you or if they are just thinking? I am here to tell you why some of us do that!
As a parent of a child with special needs, my brain is usually thinking about 15 different things at all times because that is my J-O-B!
As a parent of a child with special needs you can
You wake up and think about the medicine needed to start the day.
How is the weather going to affect your child?
Anything happening today outside of the normal routine that you need to verbally and emotionally prep your kid for today?
For example: para going on vacation, pajama day, field trip, holiday, etc.
As you lay in bed thinking through the prep, you are also listening to hear for a cough. If you hear a cough is it a dry cough or a wet cough? You are listening to hear if your child is out of bed. An out of bed child could be well rested and happy to comply or well rested and engrossed in a toy and refuse to cooperate. A sleeping child could mean a sick kiddo, a kiddo that was up all night and snuck gluten somehow, a crabby kiddo, a happy kiddo, a kiddo that simply just wants the lights off.
Running through my mind at the same time:
-her neck: is her head tilted? Is it slight or laying on her shoulder? What did she do previous/post to noticing?
Children with Down syndrome are know for having NECK INSTABILITY (aka atlanto-axial instability) caused by low muscle tone.
This is an extremely serious condition as it could cause paralysis from the neck down. Until recently doctors use to test for this by an x-ray of the neck. However, recent research has proven that the x-ray can be inconclusive. Tell tale signs are neck pain and/or head tilt, and neck muscles seizing up for extended periods of time. In order to avoid injury, children with neck instability are to refrain from neck jarring activities. These include but are not limited to: trampolines, riding horses, somersaults, bounce houses, etc. As muscle tone improves the neck vertebrae become more stable and are less likely to slip.
-gluten/food: is everyone that she is going to come in contact with today aware that she has celiac? Do they know what it means? do they understand cross-contamination? Does she have gluten free food? snacks? is the lunch menu approved for gluten free? What is for dinner? Do I need to meal prep?
CELIAC DISEASE is not the new fad.
It is an autoimmune disease. When gluten is consumed the immune system thinks it is bad and attacks the small intestine.
If you are newly diagnosed check out this book
along with my post: Transition to a gluten free home in 3 EASY steps!
–thickener: does the school have enough thickener, is there thickener in my purse, does the daycare have enough thickener, does the new teacher at daycare know how to use it properly…does her father have thickener?
Children with Down syndrome have a high risk of DYSPHAGIA.
The culprit is low muscle tone which causes swallowing issues. If not treated with thickened liquids this can lead to respiratory issues, reflux, and a mired of other illnesses.
–transitions: who is picking up today, routine disruptions, day of the week, weather (zipping coat, wearing hat, wearing gloves).
ROUTINE is extremely important!
Children with special needs thrive with routine. This is hard in an ever changing world. However, the more effort that is put in up front the less effort spent on the back end. When a change is anticipated attempt to introduce it slowly and provide time, patience, and communication.
–health: A parent is ALWAYS thinking about their child’s health. When a child has weaker immune system the typical runny nose, cough, earache, stomachache, constipation does not just stop there! No, no! These are usually first signs and symptoms for a bigger/larger issue at hand.
(nugget: This is when momma gears up for a hospital visit and packs a go-bag)
–sensory: We are constantly stimulating our senses. For some it is just too much. As a parent we can help curb the stimulation by being aware, mindful, and planning.
Here is a list that we deal with on the daily: crowds, fire alarms, loud sounds, reverberation (for example basketball courts), hair brushing, touch, brushing teeth
–surroundings: Typically developing adults struggle with being aware of their surroundings! Just try walking down an aisle at Walmart and count how many people actually make eye contact with you! I bet it is less than 5! That is sad. Now place a child with special needs in that aisle. Scary!
When considering the surroundings consider the following: level of social skills, communication, ability to ask for help, ability to look both ways, ability to not get in a white van with a man with a lollipop! Ability to not answer the door when the doorbell rings. Ability to not chase the dog/toy into the middle of the street!
Temperament: Lastly, but most importantly How is she?
Is she talkative? whiney? glassy-eyed? energy level? cooperative?
Okay, I just threw a lot at you. Why am I telling you this?
If you can understand WHY someone reacts/acts in a certain way, you can empathize, help alleviate stressful situations, and approach topics delicately.
Those of us with children who have special needs may seem scatter brained, overwhelmed, exhausted, and/or anxious.
It is hard to prepare for every second of every day for a child who cannot.