How many of you reading this have had the experience where you and your child or children with autism are shopping at the grocery store, sitting in a church service or waiting at the doctors office and your child starts to have a meltdown over something they want or just simply starts stimming because they are beginning to feel overwhelmed in the environment? You are handling the situation the best you can in a public setting, but you can feel the eyes of everyone around you bearing into your soul. There is always that one person who says what everyone else there is thinking..."Why don't you just discipline your child better? If you would just..." well you know the routine. You've been through it a million...gagillion times! You wish that just one person would say..."You're doing a good job. I understand." Or something a little bit supportive. 

So many people misunderstand or don't believe autism even exists. They say that the behaviors are because of bad parenting, etc. Whether it's friends, neighbors, co-workers, or relatives, they just don't know what goes into parenting our kiddos on the Autism Spectrum. Some try to understand,(or think they understand because their cousins best friends neighbors nephew has autism) but unless you've been there, there is just no "getting it". And all to often, parents feel isolated and alone because going out into public is very difficult with the transitions and sensory issues of their child. This is why finding a good support group is so important. You soon discover what an invaluable part of your support team they really can be.

Last night, Blair and I went to the East Valley Autism Network (EVAN) support group in Phoenix. We found great support people there. You know you have support when you leave feeling stronger than you did when you arrived. These are people who truly understand the plight of the Autism parent because they have been/are there...done/doing that! And with the divorce rate and depression so high for parents within the special needs community, the need for support is very important. 

According to the 2000 US Census, families with a female householder with no husband present were more likely than other family types to report having members with a disability. Among the 12.5 million such families, 34.8 percent reported one or more members with a disability, compared with 27.3 percent among the 55.5 million married-couple families and 31.6 percent among the 4.3 million families with a male householder with no wife present. Divorce following the birth of a child with special needs has been cited as the primary factor leading to a single-mother headed households for families with a child with special needs (Sloan Work and Family Research Network, 2008).

According to Caring Today magazine (2010), four in 10 caregivers report increased feelings of depression and three in 10 believe that their health has deteriorated since they've become a caregiver. Family caregivers who provide more than 36 hours of care weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. 

This shows me that developing a strong support system is worth more than you could ever calculate. With the support and education that is available at these parent groups, you begin to feel a sense of community and belonging, as does your child who oftentimes finds friendship with others who are also on the spectrum and understand them. These friendships can last a lifetime. This provides social interaction with peers and adults with whom they can feel comfortable and don't have to fear rejection or bullying.

Other very important members of your support team would be your Occupational Therapist, Speech Therapist, teachers, any family members who are willing to learn more about autism and your Hab and respite provider. The pressures of raising kiddos on the Autism Spectrum can be excruciating at times. The levels of frustration and discouragement can be overwhelming. But with your support team, you can get through those times and move forward, working together to meet the goals you've set for your child's success. So...is support important? ABSOLUTELY!!!! WITHOUT A DOUBT!!! You more than likely won't survive without it. 

"I don't want to label my child." I hear this from many parents who avoid testing their child out of fear that, with the diagnosis, they will carry a label for the rest of their lives. The first thing I want to do is distinguish between a label and a diagnosis. What makes a label different from a diagnosis? To begin, let's look at the dictionary definitions for each word.

Label:  to classify, designate, or describe; a short word or phrase descriptive of a person, group or intellectual movement.

Diagnosis: the process of determining by examination or analysis the nature and circumstance of a diseased condition (I am not inferring that Autism is a disease); the answer or solution to a problematic situation.

A label can be positive or negative and is based on someone else's perception of another person or group of people. Labels are names or words such as stupid, smart, good, bad, fat, skinny, beautiful, ugly, geek, nerd, cool, jock, fast, slow, funny, serious, hard-working, or lazy. These words can hurt and wound or encourage and build up someone. A diagnosis, however, is different...it's neither positive or negative...it just is. Without a diagnosis, labels can define you and you may not rise above them. All you see is your inabilities and deficits. If you struggle in school and get poor grades, can't complete assignments, etc....you may be labeled dumb or lazy. But, if you get assessments and find you have a learning disability, you are now able to get the assistance you need and find freedom from the labels because you can improve and succeed. 

In order to help your child succeed, it is imperative that you get that diagnosis. It is required to receive the right services and necessary for you to be a proper advocate for your childs needs. Just as the person who has all the symptoms of diabetes or heart disease needs the diagnosis to receive the treatments and medications to keep them healthy...so does your child who shows all the symptoms of Autism Spectrum Disorder. It's not scary or evil. It just is...and they need the supports to ensure they will be a success in life. So...don't be afraid of getting the testing your child needs...it's actually their first step to achieving all their potential.

"Why don't you just get over your anxiety?" "Can't you just push through it?" "Can't You do (xyz) to fix it?"  People are well-meaning but very uninformed about the level of anxiety that can accompany Autism. If we have not figured out strategies for ourselves and what works for us, we can get stuck and it is difficult to move forward no matter how hard we try or how much we want to "be different". 

I have a lot of anxiety about many things. One of them is going by myself into situations where there are several unknowns. These unknowns can be: who will be there? Will I know anyone? Are they "safe" people who will not judge me for my "not so visible" disability? What will they talk about? (If it's at a restaurant) What should I order? and How loud will it be...music, voices in the restaurant, and will I be able to hear the others at my table because of the noise level? Another anxiety in these situations is the social nuances themselves...conversational turn taking (dialogue vs. monologue), when to share my opinions and when to keep them to myself, how controversial will or can the discussions be? 

Last night, I had a Mom's night out with several other moms from our Homeschool Co-op...and I went through the processes of unknowns and social nuances. (One thing that helps me is silent role playing. Thinking through some possible situations, what I can say and how I should act or respond.)  Still nervous, I went anyway. When I got there, I spent the first, maybe, hour just listening...not speaking. I assessed the situation and the atmosphere. I answered questions when asked, asked a couple of questions myself. I was aware of the length of my side of a conversation and payed close attention when someone else was talking to me. I worked hard at responding appropriately and trying to ask questions about the other person. It's a little easier when the other person and I have something in common, but it's harder when the other person seems aloof or too perfect. I tried to be very aware of my surroundings and tried to focus on only the people at my table. (It helped that I sat with my back to the rest of the restaurant.) Lots of heavy brain processing. I did well, but it was very hard. 

Now...put me on a stage to speak in front of large crowds...no problem. Put me in a smaller group or one-on-one, and my anxiety goes through the roof. However, what you see on the outside doesn't reflect what is going on inside. I have worked hard to develop strategies and routines to help me cope and adjust when I need to. All too often, I have let this anxiety win and have stayed back out of fear, not wanting to face the situation. But, today, even though I still struggle, I fight through...heart pounding, body shaking, knees knocking. I say a prayer and just GO! A well-known tv preacher said, "Do it afraid!" Often, that is just how I do it. The key is...I DO IT! 

I try hard not to let the anxiety rule. Do I always succeed? NO. Sometimes I am too exhausted to fight. I have to gauge my activities. If there is something I want to do but there are a bunch of other things scheduled, I have to prioritize what it is most important and decide what I want to reschedule or cancel. I need to be aware of my energy levels. I can't do too much or I'll crash. No matter what, after any stressful, high brain processing event, I need to take recovery time. Usually the next day, I have to do low stress activities and take some "down time". Otherwise, I overload and again, crash. 

So, I struggle through my anxiety, working through it day by day. And those times when I am too tired to push through, it's okay...I rest.  But, next time...watch out Anxiety...I'm barreling through! You're not going to stop me from living my life!

I wish that I was able to easily do things. I am good at many things, but not great. I can usually figure almost anything out, but it takes so long and I get easily frustrated. My brain gets overloaded and my emotions get overwhelmed. Then, I need to take some time to decompress. 

And now...all I wanted to do is just get my blog started and my brain gets blocked. I can't think of what I wanted to say. So...I will wait until next time to say something profound. I hope you will forgive me. There has been lots of activity in our lives the last two days. And it's not over yet. We still have an event to attend tonight. Tomorrow we will be home and I will take the day off. 

This is how it is for the life of an Aspie...and when you multiply that by four (which is how many there are in our household) you increase the recovery time as well. Since all of us have High Functioning Autism (Asperger's Syndrome), we have to have grace with one another all the time. Even when we ourselves are overwhelmed and feel like having a meltdown. (That's where I am right now.) We, obviously, don't always have patience when another is having an issue. But, we try. 

Well, until next time, I will sign off and hope you all understand. I will share something more profound next week. Have a great week!