Self-Care and Parenting Aspergers: Pencil in YOU

The day you become a parent changes everything and there will always have to be a give and take to find the balance that our souls so desperately crave. The problem lies in the fact that for many of us, while we know parenthood is an amazing blessing, it often turns into an all take experience.

As parents, we are desperate to understand and help our children succeed and prevail over any challenges that may come their way. Far too often I see parents who, out of the most genuine love, lose themselves while helping their children.

I believe that cases of this increase when your child may need extra interventions and have daily struggles that require more to get through the basics.

Pencil In You

Having a child diagnosed on the spectrum can bring a variety of different emotions and responsibilities depending on the day. Your priorities often change because they have to, and the scale of give and take seems to tip even more off balance.

While you are in love with your child and grateful for them you are also tired, stressed, and often worried. The stress of processing your reality and navigating it year after year can add a lot of stress to the other members in the household as well.

Now to get to the good stuff! It’s time to put all that aside and think about YOU!

It’s time to get some balance in your life and that means that as parents we need to take some time to be selfish. Just go with me here and I promise you that in the end the other members of your household will be grateful, and so will you.

I get it, you may not have the time, money, or energy for anything extra. However, those are all excuses, so get out your calendar because it’s about time you penciled yourself and your priorities in.

Here are a few steps you need to take in order to keep yourself happy, healthy, and functioning:

Mental Health in Your Community: Learning to Support Your Child’s Diagnosis

The community I was from is set up for autistic people, people like me, to fail. One of the big issues in a minority community is that mental health is not addressed and no one believes in it. The resources are usually not available or difficult to find for people in minority communities. There are also long-standing traditions of mental health denial because of a “pull yourself up by your bootstraps” mentality. Because minority communities have often faced severe oppression and suffering in many ways, they have built an ideology about being strong and not helpless or weak. This has had many adverse effects on the mental wellbeing of the people within those communities.

Your Child's diagnosis, becoming an expert

Since mental health was somewhat of a myth to the community, it was a struggle I endured in my entire life.

I’m an African American male who comes from a community where if you displayed behavior that is associated with a mental illness, you were punished. African American communities often believe strongly in going to church, and they will tell you to pray about it and not seek help from a mental health professional. If you seek help from a mental health professional, you are viewed as weak. They tell your child to “man up, it’s all in your head, you’re making it up, etc.”

It’s hard to accept a mental health diagnosis in the Black community because of traditions we have been taught with.

Nobody in my community accepted my autism diagnosis, and I was ridiculed for seeking help. It was not until I was 22 years old, when I had my third suicide attempt, that I received help and support for my autism and other disabilities.

Today, to help others avoid this struggle, I have composed a list of ways you can accept your child’s diagnosis no matter how severe it is. Remember, you can be victorious and become an expert and advocate for your child.

Finding the ABILITY in Asperger’s

Many say that Asperger’s isn’t a disability, it’s a different ability and I completely agree. We all know that children and adults with Asperger’s bring so many unique gifts to the table. With that said, it is important as a parent that you understand and truly believe that statement. You need to take that thought and hold onto it because as a parent trying to help your child navigate this world, it isn’t always going to feel that way.

Child with balloons

It is our job and right as parents to worry in general, but during times of struggle it elevates a little, okay a lot, and your worries and fears stretch far beyond the soccer field. The game plan, the therapies, and the progress are all part of your life too. The struggle lies in the fact that the plan will need to change, that was once right no longer will be. Just as you think you are smooth sailing, a small change in life may cause the need to reset everything.

Many people see children with Asperger’s and they don’t understand that their needs are lifelong. They don’t see that even if you watch your child succeed at a young age, there will be new territory to navigate as they get older and new situations arise. Of course every child is different, heck every person is, but there is a big underlying root of anxiety, fear, and discomfort for those living the Aspie life.

Perhaps that doesn’t make you feel any better and might even scare you more. I’m sorry if that’s the case, but I truly believe it is important to acknowledge all of the feelings and territory that come with the job. This is a job that comes with a lot of hard work, confusion, sadness, worry, and readjusting. There are going to be days when it doesn’t feel like “a different ability” for you or your child and you need to allow yourself to feel that.

You need to hear and find others who know the guilt that you may sometimes feel when you doubt yourself.

There is a guilt that you feel when you are sad for your child during times of struggle, and when deep down inside you wish that struggle wasn’t there. You will have people tell you that all children struggle, which they do, but it won’t help or bring you any comfort. There are days that you will just feel lost and you will cry.

No matter what happens in life, one thing will always remain true. You will find a way to help your child and come up with a new plan to address life’s new obstacles. You will always rediscover your footing and help them do the same. You will always love and adore your son or daughter and you will never stop fighting for them.

While some days or time periods may scare you or even bring doubt, you will always once again feel that Asperger’s is simply a different ability, and those are the moments that are going to carry you through.

So even if you don’t feel it at the time, always carry that thought with you because I promise that the storm will pass and once it does you are always going to need the reassurance! It may be a wild ride, but the times that you get to celebrate that extra “ability” and triumph are what makes it all worthwhile.

By Jessica Nieminski

Using Mini-Maps at Home to Help with Difficult Tasks

Parenting Aspergers

Remember that a mini-map is a visual strategy that takes a chunk of time and breaks it down even further. This seemingly simple strategy can be highly effective to address “rough spots” in different environments. We have seen how this can prevent work avoidance behaviors at school and now we will shift the focus to an overlapping struggle that is common at home: homework!

mini maps at home

Many students with Asperger’s struggle to navigate the waters of school life only to come home and face more academic work.

It is probably safe to say that most students, with and without Asperger’s, would rather not deal with homework in the evenings. However, the difference is that the student with Asperger’s has worked harder all day long to deal with not only academic stress, but also the added challenges of social interaction and sensory overload, creating a cumulative effect with different possible results.

It is difficult for neuro-typical persons to truly understand this internal struggle that persons with Asperger’s deal with on a daily basis. I found myself in a situation recently and thought it might be a glimpse into what going through a stressful day as a person with Asperger’s might feel like:

Stuck on Skip: The Patterns of Life

My son absolutely loves letters, shapes, numbers, and colors. He can do different activities, but spends majority of his day focusing on the things that he loves most. He loves them because he understands them and they are always constant. A q is always a q, and b always comes after a. One plus one always equals two, and a triangle will always have three sides. Or in his case, his favorite shape, a dodecahedron, will always have twenty sides. A dodecawhat? Just trust me and stay with me here.

My son spends most of his day studying these things and lining them up. In fact, he lines everything up. I often even know he was in a room because of the telltale evidence he leaves behind. For example, the other day I knew he went into my bathroom because when I went in there, there was a line of tampons on the floor organized by color. He doesn’t have all the order that he needs in life so he creates it, and I’m pretty sure he would do this all day long if I would let him. Of course the one exception is that he likes the couch throw pillows on the floor and I like them lined up on the couch. Can’t figure that one out!

Happy family on meadow at summer sunset

The point is that every day I feel like we often do the same things, over and over. I often even hear the same phrases and words over and over again. For me, this is the norm, and I am happy to live it, but sometimes I can’t help but feel like his life and mine are stuck on skip.

Like a record that just can’t get over that scratch, or for any youngsters out there, a DVD that is skipping back to the same part. Or for even younger folks, buying a movie on apple tv that won’t play through. Isn’t it amazing that no matter how far we advance as a society, our issues are still the same?

Anyway, every day is similar and it is a good thing in our house when we find something new to line up or perhaps even change the pattern, because that is change! In fact, my son is so creative in creating new patterns that when family was recently over we all felt like we were doing mind puzzles trying to find his reason and new pattern choice. I see it like he is leaving mini works of art all throughout the home. If you could see some of his more intricate letter designs I doubt you would describe it any other way. I often call him a letterologist  or letter ninja if there were such a thing.  

Fidgeting: Using Games and Exercise for Children with Excess Energy

Fidgeting is a common result of excess energy in children and can interfere with positive behaviors. Excess energy and fidgeting can be distracting and disrupt learning. According to an article on Autism Speaks, by Geraldine Dawson and Michael Rosanoff, “Increased aerobic exercise can significantly decrease the frequency of negative, self-stimulating behaviors that are common among individuals with autism, while not decreasing other positive behaviors.” Exercise is a positive outlet for children exhibiting these behaviors.

Physical activity will release some of this energy and in turn, promote positive behavior. Lack of time is a common barrier to fitness with therapy sessions, school, and doctor visits. To help facilitate this we have come up with some ideas for fun exercising regardless of a busy schedule. We have provided different options based on various children’s interests, in order to keep them fully engaged, as well as different variations depending on the level of comprehension in each child.

For those children interested in sports, you can set up “routes” or “bases” with cones for the children to run around.

At the end of each course, you can leave a football, baseball, or soccer ball for them to throw or kick to you. If your child comprehends and reads numbers well, you can label each cone and call out which number for them to run to.

Otherwise, you can use flashcards to label each cone, and you can hold up the matching card that you want them to run to. This will add some cognitive thinking to the exercise. Have them run these routes for about 30 minutes or until you feel they have released all their excess energy.

Especially in the summertime, some children might enjoy water sports or games. Water gun tag is an easy way to get the children involved in playtime outside to shed some energy. You can utilize a similar labeling system as the sport ideas mentioned above, but feel free to switch it up a bit and use some pool noodles or other water toys for them to run to.

You can incorporate colors to help the children engage in their visual senses. Motivate the kids to run to the next cone or noodle so they can get a nice and refreshing spray of water or spray you and any siblings with water. Again, play for around 30 minutes or until fatigued.

For children who enjoy a challenge, you can set up a fun obstacle course for them to run through.

11 Things Not to Say to an ASD Parent

It wasn’t until the day that one of my children was diagnosed with both Autism Spectrum Disorder and Sensory Processing Disorder that I realized quite how upsetting the topic was to many people. I still do not know why labels that are used for medical purposes, that open doors for children in need, can be such an issue for so many. After all, the word “Autism” to me is just a word. My child is still my child, and the world we live in may be unique at times, but it is also extraordinary.

I’m not sure if people just don’t know what to say, or if they are simply uninformed and inexperienced. As a parent of two children who face specific challenges, I can assure you that there are a list of things that I have had said to me that are anything but helpful.

Here are just a few suggestions for sensitivity towards parents with ASD children:

1. Don’t worry, he is just a being a boy or she is just being a girl, because boys are like this and girls are like that.

Yes boys and girls are different often times, but there are many signs and characteristics of autism spectrum disorder that if missed or ignored could be hurtful to your child if they do not get certain resources to help them overcome the adversity in their lives early on and build upon the many amazing qualities they already have.

2. At least they look pretty normal. If you just looked at them you would never know.

First: “normal” is a joke. Second: I never said that my kids were not “normal.” Third: what they look like at first glance does not directly correlate with the obstacles they face in their lives or that we face in our household. Fourth: I would love my child no matter what they looked like.

3. Doctors and therapists are just taking advantage of you and don’t always know what they are talking about.  They are just getting you all worked up over nothing.

I am just going to insert some ????? here because this statement is insulting to many people on many levels. There is no comment even worth the time to respond to a comment that is clearly more about a person’s denial and own feelings than the life and best interests of a child.

4. There are plenty of kids who don’t talk. All kids develop at their own pace.

15 Steps to Start the School Year Right: Anxiety, Transition, and Preparing for Success

As students with AS and NLD of all ages return to school, there’s two challenges: making the transition from summer to the school routine, and setting up the year to maximize success. Transitions and novelty often are the source of anxiety, so many AS and NLD students are increasingly anxious as that first day back to school approaches.

Anticipatory anxiety can be expressed as headaches, stomach aches, and specific fears of the year ahead: who’s in the classes, will there be bullying, what’s expected by teachers, having to take gym.

How can a parent help (or an older student prepare)?

Deal with anxiety:

  1. Recognize anxiety is a real feeling, but not an accurate prediction of what’s going to happen. Too often parents get caught up in the anxiety themselves.
  2. Meditation has been proven to turn off the “fight flight” response, and the breathing techniques are useful to use when there’s challenges or frustration. It’s a good time to start practicing daily. There’s apps for all ages.
  3. Exercise is another good way of dealing with anxiety. It doesn’t have to be a sport. Walking outside can be calming.
  4. AS and NLD students usually have ideas of what helps with anxiety but sometimes don’t initiate doing those things: reading, music, playing with pets.
  5. Use self talk – realistic self encouragement can be thought through ahead of time: “I can handle this,” “I know I can get help if I need it” are examples.

Using Mini-Maps to Plan for Challenging Behavior in the Community

Mini-maps can be highly effective in dealing with work avoidance behaviors at school and at home. Let’s now take this same strategy and apply it in community settings. Remember, a mini-map takes an event or task and breaks it down into smaller, more doable steps.shopping mini-mapsFor a family that has difficulty with seemingly simple shopping trips, a mini-map might be a good tool for the Aspergers family member. Mini-maps help to stay focused on the task at hand while preventing intense preoccupation with specific aspects.

An Example of How to Use Mini-Maps When Shopping

A family would struggle when going to a store where there was a video section. The son would immediately take off for this area of the store as soon as they got there. He would stay there for long periods of time in spite of many verbal reminders on the way in the car.

This behavior would turn a short trip to the store into a long and almost painful event for everyone. Over time, this family might avoid these trips all together.

A mini-map for this situation might include a list of different departments in the store that they plan to visit. By adding either time limits or number of items to purchase at each part of the mini-map, their child might be able to flow through the strategy more successfully.

The following is an example of what this mini-map might consist of:

Parenting Aspergers: A Father’s Unlikely Success

by: Jennifer Allen

I was inspired to share the story of the ongoing relationship (both struggles and triumphs) of my husband Herb and our son Sam after creating the below series of photos.

Parenting someone diagnosed with High functioning Autism or Asperger Syndrome begins as a challenge to the adult who had expectations about who their children would be.

Those expectations may be for their son/daughter to be just like them, or to become the person they never were. But these preconceived notions must be disposed of for the child’s success. This is the case with many families facing the newfound diagnosis of Autism or Asperger Syndrome. The high divorce rate among parents with a diagnosed child is testament to the fact that it can be a great struggle that places strain on all areas of life.

When Sam’s Autism diagnosis was revealed to Herb and I some 14 years ago it was raw, new, and life changing to say the least. Our first-born Samuel was struggling in elementary school and until that point we didn’t know why. The Autism/Asperger fact sheet described each misunderstood challenge Sam was displaying and this allowed us insight into creating better communication with our son.

Herb Allen (l) enjoys his sons (Sam) humor.

Herb is a man’s man.

His rugged good looks and “pull yourself up by your bootstraps” mentality would not seem a sensitive fit toward parenting a son such as Sam. Sam is unique. But not even Sam knew how he fit in to the world around him, much less how to blossom under a father like Herb.

Once the shock of the word “Autism” wore off, it was time to learn how our son saw the world. I immersed myself into this new and foreign reality. We hung close to those on the same path and chose Sam over society and its demands of conforming to social expectations. In other words, we chose Sam.

Choosing to venture into unknown obsessions (i.e. trains, science, planetary systems, Pokémon, and weather to name a few) gave Herb and his son a common bond. This certainly isn’t a popular decision. You realize this when neighbors, family members, and society in general are taking their kids to soccer games, parties, sporting events, and social clubs without even looking your way.