A Message to Parents with Young Children with Asperger’s From A Seasoned Parent of A Young Adult With Asperger’s

As a seasoned parent of a son with Asperger’s, and please note I have a son with Asperger’s, not an Aspie son. I define him as a young man not Asperger’s. You will also note that I do not refer to Asperger’s as a disorder. I refer to it as a syndrome. A disorder alludes to something or someone who is broken and needs to be fixed. i.e. a computer virus that can be repaired. A syndrome is a challenge that one must adapt to and live with. Compensatory strategies may be taught to ensure a level of success. But Asperger’s can’t be fixed.

I have most definitely experienced a multitude of emotions in terms of parenting my son to young adulthood, and still do.. If I named every emotion I have felt, they would most likely have a length span which would originate on earth and reach as high as the furthest star in space.

To name several, I have experienced apprehension which was resultant in my fear for my son’s future. I felt pain from the inevitable ostracism he endured at the hands of peers, and adults. I have experienced sadness which originated from my sons struggles and not conforming to my perception of who he was intended to be, the person I visualized he would become, and the things I felt he should think and feel.

I have felt the uncertainty resulting from naysayer’s comments and predictions of who my son would become as a person both developmentally and behavioral. Naysayers predicted how my son would develop and what his future achievements or lack thereof. One would think professionals and society at large had psychic abilities and peered into a crystal ball to make predictions.

To parents with newly diagnosed children, I am here to emphatically implore you never to give up hope. If you give up hope, your children will certainly give up as well. You will get frustrated, feel the uncontrollable urge to bang your head on a wall, cry, and yes at times even wonder why you were blessed with a child with Asperger’s. You may even, (horrors) wish that your child would go away.

You may find yourself feeling intense pangs of jealousy when you see your child’s schoolmates walk by in a clique laughing away as they enjoy their day of play together. You may even experience intense anger and jealousy towards other parents while you silently wonder why their child was not born with challenges.

These feelings are all normal. Parents are human beings. Wishing your child would go away while you are under duress does not mean you really want him to disappear. On the contrary – it means you have invested so much love and expended so much effort into doing what is best for your child, that you merely crossed the line from loving them to the point exhaustion.

If you are the parent of a younger child, please do not surround yourselves with, nor listen to the naysayers who predict a life of doom, gloom, and anguish for your child. After all, you know your child better than anyone. You live with them 24-7. Trust your instincts. A parent knows what is best for their child. You are your child’s best advocate. Your child will take two steps backward for everyone they take forward. Adjust your expectations. Do not be hard on yourself and note merely the steps backwards. I f you adjust your expectations and look hard enough for the small steps forward you will be surprised at the growth that was not seen.

Children with Asperger’s do develop and succeed within the right environment. The anxiety stems from basing our expectations on what the Jones’s kids down the street are doing, what our friends and neighbors think of our children and us as parents. If we let go of those expectations and gauge successes on our child’s developmental and cognitive level and not other children their age, we will be pleasantly surprised.

Note your child’s achievement’s in baby steps. Do not worry about what your child will achieve ten years down the line. i.e. will they have a girlfriend, kids, get married, have friends, or simply get a decent job that will enable them to live independently. Remember that the average child with Asperger’s has a developmental age that lags 4 years behind their chronological age.

As the parent of a young adult son with Asperger’s I am hear to tell you that they have many attributes to appreciate. On a humorous note I will start with my son’s knowledge of electronics and computers. This sense of awe I now have for his computer talents were a sense of frustration when he was young. I cannot count how many computers he corrupted and how many mother boards he damaged while dismantling our computers, rebuilding them, and programming them with incompatible hardware.

As a little boy with Asperger’s, my son imitated people with foreign accents in public places. His lack of discretion would cause me to become flush from embarrassment. His knack for impersonations has come in handy when telemarketers call. My son convinces them that he is from a foreign country and doesn’t understand English. The telemarketers inadvertently hang up. I will emphasize that he has learned the fine art of discretion and outgrow public renditions of impersonations.

That young man has grown up to be a computer whiz and can now install modems, set up our new computers, and install programs safely. His talents have saved us a princely some of money for cable personnel, phone personnel, and computer repairman that did not warrant calling due to his self-taught expertise. My fondest memory was when the cable company wanted to come out and set up our new digital cable box. My so offered to do it for free. My digital system was set up in all of 12 minutes. My son was the ripe old age of twelve at the time!!!!!!!!!!!!!!!!!! Thus, what was deemed a negative and aggravating personality trait as a child has proved to be an attribute as a young adult.

As a young child my son was prone to emotional meltdowns from sensory overload. As a teenager he would provide a verbal debate for any topic or request directed towards him. If I sent him to his room for being argumentative, his debate often continued in a solitary dialogue as a soliloquy. His strong personality allowed him to walk away from children who were doing drugs, etc. Yes, a sense of nonconformity can have its merits. His debate skills turned into a talent for writing.

A humorous example from his childhood would be when we attempted to use the magic 1, 2, 3, program to teach appropriate behavior skills. Our son would act inappropriately and we would put up 1, 2, 3, fingers. When he continued to voice his opinion we sent him to his bedroom. After several weeks of implementing the behavioral program we realized that he would act up ,hence get sent to his room right before we were due to leave for church. We realized he goaded us into implementing the 1, 2, 3, program so he would not have to go to church. We quickly modified that and informed him that he would be expected to go to his room AFTER church. My son walked away and yelled, “That magic one, two, three doctor is a quack” :-0)

I am proud to say that by injecting a little humor, perseverance, venting occasionally to anyone that would listen, and most importantly adjusting our expectations to my sons needs he recently received his bachelor’s degree in psychology from college with a struggle, but much perseverance on his and our part. He successfully lived in the dorm. Again he struggled, but we were 45 minutes away if he needed us but wanted to give him a taste of independence. Independence that did not include the normal socialization of college life by neurotypical standards. But being with peers and fending for himself nonetheless. As I mentioned earlier, process and accept it in baby steps.

My son has a driver’s license. He passed after three failed attempts, but along with us he persevered and never gave up. Make no mistake our family still struggles, worries, and gets frustrated just like other parents. But as time has passed we have learned not only the art of teaching our son to accommodate us but to realize we need to accommodate him as well. I equate our quest with accepting my son. If we expect him to learn societal mores of the neurotypicals than we must attempt to make adjustments for him as well.

When in a foreign country Americans tend to expect foreigners to speak English so we can comprehend them. Shouldn’t we make the same accommodations for individuals with Asperger’s as well? They speak a different language than neurotypicals  hence they can learn the world of neurotypicals but we can learn about the Aspergian lifestyle as well.

Parents, I leave you with this. If you have not pulled so much hair out of your head that you are now bald  from frustration at this point I salute you. Yes, it does get better:-0)

Rock on, give your selves a pat on the back for a job well done as parents, and know there is light at the end of the tunnel.

Mari Nosal, M.Ed., CECE

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

 

Moms With Disabled Children Struggle To Climb The Career Ladder When Children Are Older An FYI For Employers And Society At Large

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.

Experience:

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 is 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.

Update to this article. Since publishing this article, I have gone on to be a published autism and special needs author. I am a public speaker on special needs parenting and adviser for schools and non profit agencies. In Massachusetts and surrounding states. I provide fee for service educational and parental intervention and advocate. I work with schools, parents and the public at large in creating a positive environment with the ultimate goal of enhancing awareness, understanding, acceptance, tolerance and create/develop a positive climate for special needs populations. I have had my articles published in several special needs magazines,been interviewed on blog and radio talk shows and am a professional blogger. My update is to reinforce to others that dreams can turn into reality if you do not give up. Never stop believing. You can make a difference.

Mari N. , M.Ed., CECE

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