Welcome to The Prog Blog. Prog is short for PROGRESS, which I strive for day in day out for myself and my family.
An autism diagnosis doesn’t come with a strategic plan, but it should. Beyond awareness and acceptance, as parents, we focus on ACHIEVEMENT. Enabling my sons to achieve and progress is the common thread in my life. With a solid strategic plan, adapted as progress is made, you can orchestrate your journey with the laser focused goal of enabling your child to maximize their potential.
The way I approach my life is rooted in 8 core principles:
Know Your Child
Be the Hub of Communication
Ensure Robust, Consistent Programming
Build a Network
Simplify What You Can
Get Help
Leverage Your Home Environment
Be and Maintain Your Best Self
Each of these principles can and will be it’s own blog post eventually! For now a sneak preview…
What is a Strategic Objective?
First, core principles must be rooted in a strategic objective. This is the one thing that every goal, moment of therapy and day of parenting is working toward. Equivalent to winning a game or making a sale: It is the one, singular objective resulting from many different tactics. In the face of autism, my objective is to maximize my sons’ potential, so they can both live safe, happy, meaningful lives with as much independence as possible. Today’s small steps must be actionable building blocks towards that strategic objective. Once established, these principles take on-going care and feeding. For me (and I’m sure for you too if you are reading this) you would do anything to help your child. Well, this is what I do to put me in the best position possible to deliver on that promise.
Know Your Child
Who is the expert in your child? YOU. A role reserved solely for parents, it can be overwhelming, but you can do it. You have the most skin in the game here because your happiness is infinitely intertwined with that of your child’s. Providers, therapists and teachers will come in and out of your life, but as a trusted provider once told me, parents are the only ones there when a child turns eighteen.
No matter how excellent providers are, both as people and in their respective fields, there is no way they know your child as well as you do. Unless someone lives with you, they truly can’t have your level of knowledge. So, your role is to share relevant knowledge with anyone working with your child. An example. My older son can tend to get dysregulated when something exciting is coming up. That anticipation of being on school vacation or going to his Granny’s house can cause him to be in the yellow zone. To someone coming in fresh, they may just see this as a behavior challenge, or as “autism”. Understanding what is driving the behavior is key to giving my son a plan to practice self-regulation.
Be the Hub of Communication
Be engaged and purposeful so you can be a strong communicator for and about your child. Like anything, you will get out of this journey what you put in, so give and receive information about your child daily. Because intervention for an autism diagnosis has many angles, and many providers see my sons, I am constantly sharing information cross functionally. There is always SOMETHING that I am communicating about or preparing to communicate about.
Preparation is necessary for effective communication because it makes exchanges purposeful and action oriented. Then that paves the path toward making progress. This repeats itself daily, and I am forever grateful for my iPhone to help make this easier for me no matter where I am.
I believe that being a hub, or bridge between all parties, is another role that only a parent can play fully. When all parties are informed and aligned, all the focus and energy can be on programming to foster a child’s progress.
Robust, Consistent Programming
I believe a strategic intervention plan is about both quality and quantity, including the ability to adjust as needed and be innovative. When my younger son was diagnosed, our public school at the time offered him a program that would have equated to about 15 hours per week total. I asked the IEP team “Where does he go after that?” and when they had nothing else to offer, I turned it down and made my own plan leveraging our health insurance.
By this point, I already had about six years of experience under my belt from managing my older son’s intervention. I had the knowledge and confidence to know that 15 hours a week was not enough. An autism diagnosis is so complex, impacting every aspect of one’s life. It can take weeks to simply establish trust and rapport with a child. Once that is done, then the dance of pushing ever so slightly to preserve success begins. It is a upside down rollercoaster at times, but the quality providers help you and your child navigate those twists and turns to come out on the other side.
Find the providers who become like family. The ones that you will always keep in touch with after their therapeutic relationship ends. The ones that are not in this just because it is a “job”. The ones who believe in your child as much as you do. You will know and feel the difference, and then pair that quality with consistency. Given the network I have established, my sons’ umbrella programming is in place 52 weeks per year, across settings. That consistency, driven by providers’ engagement, dependability, and strong communication has proved infinitely valuable. It doesn’t just happen though, and one of the things I am passionate about is ensuring providers have more access to training in these areas. More on that in a future post!
Build a Network
As in business, I cannot stress how important a strong network is for families managing an autism intervention plan. There will be a time when you feel you have no idea what to do, and you will be able to turn to your network.
First, you need to have experts in several disciplines that know your child and can be an ongoing source of consultation to you. For me, occupational therapy (OT) was a foreign language. I participated in many of my son’s OT sessions so I could learn something I had previously taken for granted: How my body felt in space, and how to self-regulate or perform daily living skills. Because an autism diagnosis impacts so many angles of one’s existence, it is important to come at this from several vantage points. Get to know the different interventions and specialists. By investing in them and their field, they will invest in you and your child.
There are many wonderful forums that offer support to special needs parents. They help us connect and remind us we are not alone. Unless someone is living this life, it is difficult for friends, and even sometimes family members, to truly understand. Some of my friendships have been formed just by those few minutes in a waiting room, so just say “hi”. Word of mouth is HUGE within the special needs family community: sharing information and contacts with each other is a great way to build a network.
If you have questions, speak up and ask. Someone in your current network may not have the answer, but they may lead you to someone that does, and so on. Your network should always be expanding.
Simplify What You Can
In today’s hectic world, this can be an obvious recommendation. Anyone hear of Marie Kondo’s Sparking Joy? What about The Home Edit series? Both are on Netflix. Look them up and be inspired.
When a family is impacted by an autism diagnosis, I believe life simplification is essential. It takes a lot to keep your child’s strategic intervention plan going, so you need to be judicious with your time.
One lever you can pull immediately is to start assessing your life’s priorities: This may look different for everyone. For me it was thinking about my commute to work, treading water in my career, downsizing our home and moving closer to our service providers. Think about the things you spend significant time doing, and then assess your child’s needs and how that level of intervention can be sustained. For years, I couldn’t fathom selling the home we had been so excited to purchase. In reality, it was too big to maintain, in a town where the public school didn’t provide value for my son, and lots of traffic away from our jobs and many trusted providers. Ultimately moving to a smaller home in a more central location continues to be one of the best decisions we have ever made.
This does not happen overnight, so be patient with the process.
Get Help
You truly cannot do this alone, and you don’t have to. You can still orchestrate, but knowing what you need and asking for help enables you to put a strategic intervention plan in place and keep it going. Preserving your longevity is key. Here are some ways I built in support:
Home Services. A silver lining of the pandemic is that this has increased. We currently have home and community-based ABA and OT services. It has taken almost a year for my son to become more independent with his morning routine, but he is progressing due to robust, consistent home programming.
Pair home services with your productivity. There are times when observing a home session is helpful. But other times when your child is engaged with a trusted provider so you can focus on something else.
Help at doctor’s appointments. Service providers may be able to accompany you to doctor’s visits or other appointments. This has been vital to get through appointments productively. We are at the point where I can facilitate nearly all my sons’ appointments on my own, but it took years of bringing quality individuals with me.
Amazon or grocery delivery. This has become invaluable to my life. While my sons do practice shopping in stores, I still rely on being able to order what is needed to arrive at my doorstep. Worth every penny we’ve paid in fees even if my husband doesn’t always agree. LOL.
Cleaning service. If you can afford this, DO IT. I maintain certain things daily. But having cleaners help with the big stuff makes the in between days much more manageable. Also, I am mindful my house is a place of employment for those that provide home services. Who wants to sit on the floor and play with someone else’s child if there are dust bunnies and crumbs all over it? Not me.
Friends and family members. While some may struggle to understand what life is like in your shoes, it doesn’t mean they don’t want to help. Delegating manageable tasks can make a world of difference. Ask for help, be thankful and return the favor when you can.
Your Home Environment
Your home needs to be many things: The place where you rejuvenate; the place where much of your child’s learning happens; the place to functionally deliver the basics of food and shelter. Many things can be done to leverage your home environment as a powerful tool to help your child, such as creating sensory or visual supports. Solicit opinions from trusted home providers and balance that with thinking of your home as a sanctuary. If there is something functional or cosmetic you can do that will help you AND provide happiness every day, just do it. Being able to depend on my home environment gives me the strength to deal with daily uncertainties and stresses. Having your home be the most conducive to success for every family member is key!
Be and Maintain Your Best Self
With or without an autism diagnosis in the family, this is a mantra to live by. I think it becomes even more critical for parents when receiving the life changing news of an autism diagnosis. This is a long journey, so you want to be on it as YOUR best self so you can elicit your child’s best self. And you also want to enjoy YOUR life—this is your life too! Carve out moments of self-care and fun to help you cope during challenging times. Maintaining your longevity is critical for your child. I follow a few rules here:
First, be happy with the small things. The chances of me jetting off to spa for a week alone is highly unlikely. I strive to carve out moments of joy in even the smallest of things.
Bring Your “A” Game. I have honed qualities that make me cut out for this journey. I am consistent, hard-working and dependable. These qualities have come in very handy when advocating for my sons. If you are struggling, get help with any area that may need improvement.
Your Best Self. I once read an article about what happens if you run into an ex or someone from high school unexpectedly. The article warned this could happen at ANY time. So, it provided a core list to ensure you always looked your best. This makes total sense and helps me feel empowered. From memory, the list went something like this: Be well groomed, develop an easy getting ready routine and stick to it, only wear what looks and feels good on you, exercise and eat healthy, try to get good sleep (challenging for sure!) and keep up all your own preventative wellness appointments.
Have Fun. I keep in daily contact with my family and friends (thanks again Iphone!). They can be with me wherever I am. I watch too much TV when I should be sleeping. I try to find humor and joy as often as possible. Make time for what brings you joy.
This journey chose me, but I choose how to approach this journey: Establish a standard for yourself, your home and therefore your child. It can and should be a high one because strategic plans are usually not intended to deliver mediocre results. Every person on the planet has the chance to progress from the point they are at now to something more. Let’s go!
Thank you for being part of my journey. I promise to share what I have learned and my opinions, and I truly welcome yours. Together we will make a community that creates and elevates opportunities to make a difference in the lives of individuals, their families and the therapists that foster progress.
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