Being the parent of a child with special needs can produce a myriad of emotions that are connected to our children’s growth and development. Some of those emotions will be guilt (did I cause this somehow), anger (why my family), feelings of loss (for what could have been) even a twang of envy when observing typically developing kids skill – set which your child struggles to develop or even possess. These are merely a few examples as each family is different.
When the children are born, you go through a grieving process of sorts. While pregnant, visions of whether the child will be a boy or a girl, what they will look like, whether they will grow up to be the next president, famous ballerina or football player and future parental and social interactions with friends prance through your head.
When the child is born and receives a diagnosis all of the dreams that you had are traded in for therapy appointments, restructuring your own time to help your child experience success to the best of their abilities. After all, just like parents of typically developing kids, you wish to have a well balanced happy healthy child and family life.
What inevitably happens in the majority of families is that you gradually develop a new type of normal. We grieve the child who initially resided in the confines of our mind and gradually accept the child we have. We learn to note the positive in them and not merely what capabilities they do not possess. As special needs parents, you take nothing for granted. Every milestone reached that you never expected your child to accomplish is savored in a way that parents of typically developing parents could not begin to comprehend. For them, playdates, group sports, outings are an unsaid and everyday part of their life. While parents of typically developing kids possess hopes that their child will become captain of their baseball team, special needs parents just want their child to enjoy being part of a team. While other parents worry about how popular their child is, special needs parents silently hope for their child to have a friend.
For the special needs parent, a simple shopping trip or outing with a child can take days to plan for. They may struggle with getting through a simple shopping trip without some extraneous trigger sending their child into an emotional tailspin. Thus, you cut your outing short. A special needs family who attempts to watch a movie in a theater or enjoy a simple family meal in a restaurant may be forced to leave due to circumstances beyond their control. A child may have an unexpected meltdown, make loud noises that are beyond their parents control until inevitably you hear the “Can’t you control your child” from other patrons.
That said, I would like to remind you that bringing up a child with special needs is a humbling, ego busting, negative self efficacy promoter and occasionally even a lonely job where it feels akin to walking down a dark path alone. You are far from alone and doing the best job possible. Remember, you ARE a good parent. If you did not love and care about your children immensely, those negative feelings of insecurity and failure would not rear their ugly head within. Those feeling arise out of frustration and uncertainty that you are not providing the best assistance to those you love the most.
The most powerful self esteem snatcher for a parent of special needs children is to revel in a skill the child has acquired which was not expected. Upon observing your child’s newly acquired skill, strong feelings of hope are felt by the parent. Just when the child achieves a new skill and we allow ourselves permission to dream about their future in a positive light, the child may regress in another area where skills had been acquired long ago. Many parents have thrown up their hands at this point and felt like giving up, cannot take parenting a challenging child any longer or simply feel like a failure while focusing on the child’s regression in skills.
Regressive behavior during development of milestones can actually be a temporary yet necessary development while the child acquires new skills. Can regression be positive? I provide to you a resounding yes. Regressive behavior can result from stress, fear of the unknown, frustration due to challenging circumstances or delving into a new experience or in this case learning a new skill.
Many equate regression in children as returning to a more comfortable time in their life that is not age appropriate. Ie the potty trained child who starts wetting the bed, or the older child who wants a pacifier or bottle which assists them into retreating to a safer more comfortable time in their life. Regression can also pertain to unlearning old behaviors or skills while learning new ones.
Learning the new skill may produce uncertainty in a child. They are entering a new territory that is challenging. In doing so, other skills may be unlearned requiring more attention from the parent for the child as he/her ventures forth with a new challenge. Hence, the child’s progression becomes two steps forward and one step back. Even adults experience this.
Haven’t the majority of we adults experienced temporary loss of skills when dealing with an all encompassing challenge such as death, illness, family challenges? Heck, I recall being so entrenched in a family crisis in the past that I misplaced my car keys only to find that they had been mindlessly deposited in the freezer by me. I recall being preoccupied with other challenges that warranted my attention to the extent that I temporarily lost the ability to write articles. Although I possessed the capability I could find no words to transfer from my mind to paper. I am sure all readers can recall variations of my examples within their own adult lives.
Occasionally even as adults, we seem to unlearn skills ourselves and they take a back burner while we process challenging events Learning is not a linear experience. Children learn in what I define a form of disequilibrium, especially children with special challenges. At times, everything is smooth sailing and you think your special needs child is on track. Then BOOM, the child appears to regress rather than progress. In fact, progression is generally evident during times like this. Kids do not develop in all areas simultaneously. Be a sleuth think of regressive periods in your child’s life as touch points.
When your child appears to unlearn skills or display much younger coping skills, attempt to identify a recently acquired skill or one they are attempting to master. You may just spot emotional or physical growth hidden in the child’s so called one step backward. These periods may go on for days or even a month.
During these periods you will have thoughts of should of, would of, could ofs running rampant through your mind. Remember that you are doing the best that you can with the tools you have at your fingertips. Your children do not come with a handbook. Each child is different and will react to different interventions in different ways. But I assure you that progression will take place with time, patience not only for your child but for yourself as well. You are your child’s best and strongest advocate. Do not let would ofs, should of, and could of demons that are generally developed from parental guilt versus reality strip you of your hopes and dreams for your child. After all, isn’t hope the biggest strength for you and a gift to reinforce in your child the most important force you possess to keep on with trudging forward.
Hang in there and never stop dreaming, hoping and believing no matter how dark you feel the road is. You and your child will keep progressing. After all, you made it through yesterday and the day before that. You will make it through today and all days thereof as well. Your kids believe in you. Remember to believe in yourself as well.
From the heart of Mari Nosal M.Ed
I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome I want my experiences and challenges to be used productively as a learning tool for other parents and for educators as well. When my son was diagnosed with Asperger’s a decade ago it was a foreign word among many parents and professionals alike. I fought for help never giving up. Through my books I wish to help parents feel like they do not walk in the dark, that they are not alone, empower them and that there is light at the end of the tunnel. I also want to educate society at large on the topic of the autism spectrum. I believe all parties involved need to work as a collaborative team in order to insure a special needs child’s success.If you like my articles, aside from being the parent of an adult with Aspergers Syndrome/ A.D.D and an educational professional, I am also a published author of many special needs and autism related books written to inspire and support parents, families, educators and society at large as well. Please stop by and check out my books on Amazon.com at Mari Nosal : Please stop by my site at Amazon Books and check out my published books on autism aspergers special needs and more http://tinyurl.com/kdspqy9