Hold on! Are You the Parent of a Child with Special Needs? Let me share these thoughts and ideas with you …
I have often heard and read that parents are their child’s best advocate. There is no doubt about this fact; and I am sure this role is a source of pride for many parents who have a child or more with special needs. Your child needs your efforts to make the home a livable place where s/he is able to recharge his or her batteries to endure the challenges that his or her disability imposes on him or her.
We all know however that this is a draining exercise for every adult who has to care for another family member. It takes too much effort for example to maintain a positive environment and communication at home and to be up to the challenge of being your son’s or your daughter’s only teacher, to be his or her link to the outside world and/or to his or her teachers at school and/or peers. Being the guardian of your child when he or she is bound to life with a disability (maybe more) is daunting especially when you are one of those parents who is passionate about seeing your child succeed at the tasks set for him or her, namely at school. This, automatically pulls you into a circle of responsibilities that take all your energy and time, including a role on the IEP team.
A statement drew my attention once, and I feel I must share it with you, goes as follows: “Parent and guardian participation in the special education decision-making process is vitally important. The most important thing parents of disabled kids can do is take an active role as a member of the Individual Education Program (IEP) team that determines a student’s path. … Parents and guardians know their kids better …” [i]. Still the fact is that guardians of children with disabilities sometimes feel overwhelmed by the additional tasks they have to do for the wellbeing of their child and they could be made to feel inferior to others who care for the child at school, and thus they feel intimidated.
The majority of, if not all, mothers of kids with special needs experience the detrimental effect of their challenge on their soul, on their mental and physical health. Many women experience the feeling of being imprisoned and bound not able to go out with their kids let alone go out alone to get refreshed and recharged. As such, in order for them to keep on serving their son or daughter (or siblings) to the best of their abilities, they have a duty towards themselves to take care of themselves by taking a time off from their duties, to get away with on some kind of a retreat with other parents who share similar concerns, feelings, worries, etc.
In fact, it is encouraging to learn that in Lebanon the idea of support groups and group therapy for adults with similar problems is starting to gain acceptance. I am namely pointing out to the idea that we already have a parents support group under the guidance of professionals affiliated to SKILD Center, The Parents to Parents group (https://skild-edu.org/portfolio-item/parent2parent/)
What I am about to share with you this time are insights from one of their most recent activities; it was a retreat where they had the chance to vent and recharge their batteries through spirituality. This get together away from the hustle and bustle of everyday routine, was an eye opener to most of the mothers who took part in the retreat. Mothers were guided to an experience reminiscent of the Bible verse that goes: “He restores my soul. He leads me in paths of righteousness for his name’s sake” (Psalm 23:3)
The world order has been organized in a manner that distracts us and depletes us of our energy. To mitigate all the negativity that comes with the chaos we live in, we need to have quiet time, alone from time to time. We need to restore ourselves. The word “restore” refers to several processes of equilibration that the person can undergo through techniques that quiet the mind and soul of the person. It is to undergo all of the following at the same time: to bring back into existence, use or restore order; to bring back to a former, original or normal condition; to bring back to a state of health, and, soundness; to put back to a former place; and to return a restitution.
It is very essential to be aware as a parent of a child with special need, that as much as it is important to do your duties towards your family and your child at home and sometimes at school, you need to schedule a time for restoring the composed you through spiritual exercises. This is a time when you can seek to put things in perspective by having an intimate dialogue with God. This is a time when you exchange with Him those things that are making you weak and tired and when you hopefully acquire the ability to listen and learn what He wants from you in this mission.
Who wouldn’t want to return their lives and routines to normal. We are here to tell you that there is hope. There is peace. There is joy in this journey as you raise your amazing children with special needs. But all this stress and all these things that we’ve been seeing going on in this world, it’s not only hard on our minds, it’s hard on our bodies.
As caretakers of children with special needs, you need to get your life back knowing that there is a difference between relief and restoration. Most of our lives, we reach for relief instead of restoration. Sometimes when we’re getting so bugged down and we just want to be distracted, we want to numb out, the first thing we do is reach for our phone and mindlessly scroll through things and just disconnect from the world. Relief is something temporary to close the void in our lives. Social media and watching TV for hours are examples. We binge on food. All those are unhealthy and temporary. This shows how our minds are so powerful in affecting how we live our lives and how our minds can truly control our behavior, the atmosphere of our homes and everything! Whereas when we calm down and focus on the spiritual mode to restore ourselves we are doing ourselves more than a momentary favor. We will be recharging to be able see the light again despite the many hurdles and obstacles that we could encounter.
Parent and guardian participation in the special education decision-making process is vitally important. The most important thing parents of disabled kids can do is take an active role as a member of the Individual Education Program (IEP) team that determines a student’s path. … Parents and guardians know their kids better
