Last week I talked about why you need an autism team, and today I’m going to share how to build one.
Build is the key word here.
As in…this is going to take time.
We have been in this autism thing for almost five years now, and we are still building. I believe you need a core but there is an ongoing process that requires you to grow with your child, with his progress, and with the natural stages of life.
Last week I mentioned how important it is to handpick your “village.” Most of this will happen organically – it will come out of a need like childcare, or help at church, or a friend that really steps up. I admit I was a little misleading, though…you don’t necessarily pick them as much as they pick you.
I have been truly dumbfounded at the people who have come along side us over the years and how they have changed our lives and when I tell them this, they respond with something like, “no, your child has changed mine.” Don’t miss this point, friend – it took me a long time to figure it out….
In denying others the opportunity to help you and your child, you just might be denying their blessing in doing so.
We were designed for relationship. Some of the biggest blessings in life come from dying to your self and sacrificing for others – it’s okay – no, it’s wonderful – to let people do that for the sake of your child. Pray fervently for God to send these people into your life.
The Core of Your Autism Team
These are the long-haulers. These are the people who were possibly there with you right at diagnosis and who you can foresee being in your life for years to come.
Needless to say, you and your husband should be #1 on each other’s list. Defy stereotypes. Keep your marriage strong. Be each other’s heroes and cheerleaders and #1 fans.
Your core is your strongest safety net. These people have seen everything autism has to offer. These are usually really close family members and long-time friends. These are the people in your life who usually have an investment in you long before your child – or autism – comes along.
These people are more for you than your child.
These are the people who help keep you sane. These are the boxing coaches that, after watching you get pumeled in the face, squirt some water at you, dab your wounds and send you back into the ring a little more motivated and encouraged.
The Childcare Team
In order for you to function in society with your child, you will need some help. And unless you discover how to clone yourself in the near future (please let me know if you do), you will need to delegate (i.e. trust) certain responsibilities to some other human beings.
We are beyond blessed to have a few key people in our lives that fit these roles.
A former preschool teacher turned babysitter turned catch-all family friend turned adopted family member. My oldest introduces her to people as his “aunt.” My husband travels a lot and we have no local family. She has attended school functions, meet the teacher, birthday parties, and will run and buy me groceries at a moment’s notice when we’re sick.
A buddy at church who has been with the boys for over three years and has said she has no plans on going anywhere who has also babysat and attended the same birthday parties.
An aide at school who although we just met this year, has slid comfortably into Team Rinnagade as if we’ve known her for a lifetime.
There is a common link when noticing these people – they approach your child and react to him similarly to the way you would.
I can trust them alone with my children because they would never do anything so obscenely opposite as I would. For example…
We eat a crazy diet. Some people are so sweet and really try to accommodate us but ultimately end up presenting my kids with something they can’t have and end up putting me between a rock and a hard place. The above mentioned team would either
1. ask first
2. simply respect that it’s probably best not to give your child food.
The bottom line – this team sees you as the key player in the child’s life and sees no need to challenge this role by showing off or putting in their two cents when it hasn’t been asked for.
On the flip side, this team is more than willing to ask questions and learn more about the way you handle things. They want to be educated and truly get to know the child better and what is best for him (which has already been decided by you and your husband).
Also, this team would gently approach you if they ever saw something going truly awry. Why? Because they love you and your child. They truly do. And you love them.
This group is for you and your child. These people have your back in front of your face as well as when you’re not around. Your families become friends and their kids are usually your child’s first shot at real, true friendship. You will know these people because you’ll be comfortable in their homes and comfortable when they’re in yours. You can go on outings with them and have play dates with without fear of the following happening:
- judgement (for the “unnecessarily” strange way you eat)
- criticism (for the way you allow your child to bounce on your furniture)
- condemnation (when you don’t discipline clearly autism-related behaviors)
- strange looks (when your child asks if he can “pet” their baby)
- rude questions (“Why does he spin like that?”)
- gossip (filling in other peers about how weird that day at the park was with you guys)
- any other ugly word that fits in this category that makes you feel like less of a person, less of a parent, and more like an idiot.
People who do NOT belong in this category I refer to as “cough medicine.” You have to plug your nose and swallow these people but they are certainly not the people you should subject yourself or your child to being around on a regular basis.
Yes, you are called to advocate and be the educator for your little corner of the world, but not at the expense of your sanity or your child’s well-being.
Other Authority Figures
This is probably the category that happens the least organically. You should try to hand-pick these people as best you can. This group includes teachers, coaches, music instructors, Sunday school teachers, and any other authority figure that will be alone in some capacity with your child.
Though you can’t always hand-pick every one, you should fight for a chance to (because it matters) and work abundantly hard with whomever is chosen to help them see the strengths in your child and help them understand how best to work with your child’s challenges.
This is where you will be called names like “helicopter mom” or be told that you’re controlling.
This is where your advocate muscles really come into play. Once your “mama-radar” has gone down, you can back off and trust the person you’ve decided to trust your child with. Until then, don’t worry about what other people think – or if the “mama-rader” never goes down, abort mission. One soccer season or hurting a teacher’s feelings is not worth the issues it may cause in your child who is already extremely sensitive to his environment and who desperately needs to see the world (i.e. social interactions) as a positive thing.