Most days I plug away…I do what needs to be done, and I do the best I can. People say I am strong and they don’t know how I do it. I just see it as a matter of survival and trying to find the silver lining while doing so.
We try to enjoy the good moments to the fullest, no matter how many bad moments they are separated by.
We are a family of two disabled parents. My husband, 42 years old, has CFS/ME, and I have ADHD, and Spinal Stenosis at 36 years old. We parent two kids with neurodiversities, ages 6 and 10, who we homeschool. We live rural, on small disability pension, in a 180 year old house that needs a lot of work.
With NO money to pay for the jobs to be done by someone else, it means we NEED to find ways to freecycle or barter and buy CHEAP the parts we need to fix our home and find the energy & time to do the jobs, between finding ways to create cheap, effective at home occupational therapy for our children.
We do all this with both our health issues, while dealing with two kids who CONSTANTLY interrupt you, need your attention for necessities and stimulate their brains for their SPD by arguing and fighting with one another on and off all day, and need constant supervision.
To say we have a stressful life is an understatement, but we are positive. We are creative and we try to create a happy fun environment for our kids.
Parenting a child with SPD is not easy. Ask any parent of a child with sensory issues. We love our kids, adore them, and see the greatness in them, but they also drain our energy, wear us out, and we have to find ways to get through, keep going, and still be their rock and soft place to fall all at the same time.
Most days I count my blessings, and be in the now.
Most days I am thankful for what we have, and think, “it could be worse.”
Most days I don’t mind needing to try and be creative with a limited grocery budget because that’s where the “extra money” needs to come from to make the purchases we make to give the kids the events and products for stimulation they need for their SPD.
Most days I smile, and sing while I’m working.
Most days I somehow find the patience to deal with my daughter’s autistic/OCD and ADHD traits and freak outs, and all her unique to her sensory issues like smells and sounds and textures.
Most days I remember that her foods cannot touch each other or she won’t eat it, and to make sure she is not around to smell meat when it is cooking, because it overloads her senses and she will refuse to eat it.
Most days I can handle that my 6 year old son is MAJORLY hyper from the moment he wakes until he passes out from melatonin induced bedtime (otherwise he’d be awake all night).
Most days I can guide him and deal with the fact that he is like a bull in a china shop and bangs into EVERYTHING for stimulation because he has sensory integration dysfunction and he is hypo-sensitive to everything and needs to have the rough impact of slamming into doors and flipping on couches and chairs, and tipping chairs backwards at the kitchen table for “therapy”. Most days I can redirect him.
Most days I can handle that he breaks a lot of stuff like our kitchen table and chairs from tipping and slamming and banging and standing on them. Most days I say “hey we can fix that”, and be ok with it since we can’t afford new furniture.
Most days I can handle that everyone here NEEDS me to do a LOT of the physical stuff operating a home on a daily basis takes.
Most days I can see the glass as half full.
…but some days…..some days I cry a little. And that is OK too because it releases the stress and allows me to pick up and keep going.
But other days, I cry HARD.
Cry hard that it is not easier.
Cry hard because being the mom of two children with sensory issues is stressful, and sucks the energy out of me. Cry hard that I am not only a mother, but their teacher and their occupational therapist.
Cry hard because we apparently make living on less than $2500 a month disability pension for a family of four LOOK easy, and people often do not realize just how hard we struggle, and I feel alone on many levels because of our income, and parenting two special needs kids.
Cry hard because I can’t afford to take my kids to sports or classes that would help their sensory needs, so I have to be creative and find ways at home to do it.
Cry hard because my husband needs to spend up to 14 to 18 hours a day in bed resting and therefore I have to deal with the kids neurodiversities alone often, and I’m totally mentally drained by the time they go to bed at night.
Cry hard because of OCD traits in my daughter, and the sensory traits in my son that have no off button.
and CRY HARD because I tap myself out of the reserved patience I have for it all.
Yes some days I cry…so that most days I can be all that i need to be.
But, today….today is someday.