It is my privilege to be featuring an article by Mari Nosal this week. She has great insight into the lives of parents and educators of special needs children–>
I have just come back from my umpteenth interview. I have a dream of working in the non profit arena in a community based program helping to empower parents and children to live the most fulfilling life possible. As many of my readers know I have a young adult son with Aspergers and ADD and spent many years fighting for his proper diagnosis ,intervention, and support. Many people with older children on the spectrum recall that Aspergers was not a household word a decade ago. Many supports and better identification techniques abound in the present that were not available when my son was young.
My older son developed a seizure disorder at age 11 which stabilized at age 18 all though is still medication controlled at age 26. The neurologist calls the medication a “band aid effect”. Grand mals were infrequent but focal seizures were frequent during age 11 to 18. For those of you that are not acquainted with focals, children can speak to you but can not answer questions that require recall such as phone numbers, where their mom or dad works etc. On other occasions these children will freeze like statues and must be gently guided to their bed, etc.
I make my statement with a point. Assisting two children let alone one born 22 months apart into some semblance of normalcy takes a toll on family dynamics, husband wife relationship, sibling relationships, and the family dynamics as a whole. Parents in this situation work hard to keep some family normalcy. It is hard work. We are just like any parent, merely wanting the best for our children. Like any parent we will go to the ends of the earth sacrificing our own needs to insure our children’s, and families needs are met.
My research shows that Moms with disabled kids experience less career growth, and tend to earn less money than parents without children with challenges because their children’s demands require extra effort, i.e. therapy appointments, i.e.p.s, and most important intensive ca-retaking demands. In a nutshell Mom cannot be in two places at once and selflessly chooses her children’s welfare over a fat paycheck and a BMW in the driveway. I love my family and would not have had it any other way!!!!!
To contribute financially when my children were young, I worked double shifts on weekends, overnight shifts, evenings during the week, resultant in small amounts of sleep in the evening so I could tend to my kids while my husband was working during the day. I know many woman have done the same thing to make sure their children were properly cared for. Thus, validating my research that woman with special needs kids earn less money.
As a Massachusetts resident this is confirmation to Mitt Romney that I was not a slacker.
Now that I have elucidated on the distinct issues that parents with special needs kids face daily, I will elaborate on my initial statement regarding Moms with older kids attempting to enter the career ladder and fulfill their long forgotten goals. As my children grew and stabilized, I decided to go back to college. This culminated in a bachelors degree in Psychology with a minor in sociology in 2005 cum laude. I continued towards my goal of an advanced degree. I completed that in late August 2009 with a 3.78 average. My thesis on education reform and school age programs cancan be found in book form on Amazon.com.
Entering the non profit arena has proved to be difficult. I specifically wish to work with special needs families. I always make it to the second interview to be number two or number three choice. The rationale is always that I did not have enough experience with special needs population. My rebuttal to the world is bold but I must make it.
Parents who bring up children with special needs possess a unique level of experience that would be an asset to any company. We have a unique reflective empathetic capacity born from walking down the path of others in our shoes. We do not get a paycheck for this work but it is work nonetheless. It is a job with no time clock – 24 hours a day. It is a job that does not receive much recognition, merely the ultimate goal of insuring that our children grow into the most independent functioning adults that they can.
Parents walk with your head up high knowing that you are selflessly performing the most difficult job in the world, assuring your child’s well being, and happiness.
To employers here are some of the qualifications I would put on a resume for parents of special needs kids. Although not monetarily compensated it is experience non the less. Never underestimate the power of a special needs parents background.
Advocate – nurse -chauffeur – therapist – organizer – special needs advocate – cook who specializes in the palate of special needs children – mind reader and more
Special qualities :
Empathetic – reflective – doesn’t waver emotionally during a crisis – stays positive when life throws curve balls – responsible, altruistic and more
I have gone out on a limb writing an article so personal but I hope I speak for all parents who are not recognized for their unpaid experiences. My goal si to have this article reach as many people as possible on behalf of special needs parents. Education is power.
Special needs parents,you possess many skills, and some are learned through life experience, not merely within a paid job. I speak on all your behalf so you walk with your head up high and remember your fulfillment comes from within you, be proud, and never give up.
Mari N. , M.Ed., CECE