I may have been a social worker for many years but that experience was unable to prepare me for my own son Jacob being born with special needs. He seemed perfect at birth and then did not meet the normal milestones. Being our quiet baby and good sleeper most friends and family were not concerned even though he would not use the right side of his body for his first year of life. Eventually a neurology consult diagnosed Jacob with hypotonic cerebral palsy.
Through years of my wife sacrificing and Jacob’s hard work in speech, physical, and occupational therapies Jacob has made physical health progress throughout his 14 years. He moved out of his specialized wheel chair and began walking on his own. Jacob began walking up the bus steps on his own. He swung a bat well enough to hit a ball on a tee. We celebrated these minor victories.
Yet the most difficult, challenging, emotionally draining, and plainly gut-wrenching disability for Jacob is his cognitive delay. Last year Jacob spent at least two hours per night on homework that our older son usually finished in school. This year is better but he continues to take Adderall, not for ADHD but to speed up his processing and help learning shift into long-term memory.
My wife and I are blessed that for the last four years Jacob has been medically stable. He has not had any emergencies related to his special needs, which has allowed us to reflect more on our family situation. This is not to minimize the extreme grief and loss some parents must experience as their special needs children pass away but I introduce grief and loss in a continuous form. I cannot take credit for this but my wife introduced me to the topic comparing Jacob’s special needs to the grief and loss someone experiences when a loved one passes away except it repeats itself. Since then I have read about it several other places.
Jacob has cousins that are chronologically younger than him but have developed milestones past him. When my brother-in-law celebrates his son’s or his daughter’s successes and Jacob being much older has not yet achieved it, this can be a grief, a loss. When other parents talk about their children’s successes, and Jacob is unable to relate to any of them, this is grief and loss. When unsuspecting coworkers ask about updates regarding your children and you, again, have to explain you have a child with special needs, grief and loss. Unable to play competitive sports, not on the honor roll, unable to make friends, failure to ride a 2-wheel bike, not to mention fears of the future, all grief and loss. Ever have family “accidentally” bring on the grief and loss? Yeah, you know what I mean.
It is a heavy burden we as parents carry as we raise our children with special needs. We need to use the resources we have, collaborate together, and help each other stay strong. When we experience grief and loss, find someone that is having one of those great days where our children make us feel prouder than any parent alive, lean on them, and get your strength back.
Use your support groups, reach for your goals, and even though you may experience grief and loss at times remember nobody can do what you do. There is nothing more challenging than raising a child with special needs but in those challenging times remember there is also nothing in this world so rewarding as the successes.
Submitted by Matt Jachalke