The Best Laid Plans: How What I Learned May Help You

No matter how well you plan, things that you never expected can still happen.

Flexibility is crucial, as is staying on top of things. Discover why planning and going with the flow are necessary in your life.

I have always been a planner. So much so that I think I started using an actual planner in middle school. 

My obsession with planning is likely a coping mechanism I developed early on to manage late-diagnosed ADHD and anxiety. And it’s served me well over the years.

The planning went into overdrive when I became pregnant with my first child. 

I had it all figured out – what the nursery would look like, breastfeeding, car seat, strollers, how I would get back into shape, and, of course, the birth plan (ha!!). 

At 39 weeks, the baby’s movement slowed substantially. 

We headed to the hospital to make sure everything was OK and ended up welcoming our son into this world via emergency c-section. 

Being a first-time mom, I was unaware of how alarming the near silence in the operating room was. No cries, no excitement. It was all business. 

I gave Arlo a quick kiss on the head, and the doctors rushed him away to the NICU.

Everything Can Change In An Instant

While in recovery, the pediatrician said he suspected our son had Down syndrome. 

Poof. The parenting house of cards I had carefully built completely collapsed. 

As I found my way out of the haze of initial shock and grief, the planning resumed. I knew nothing about raising a child with a disability. 

So, I got to work. Since we were living in Malaysia when my son was born with plans to move back to Northern Virginia shortly after his due date, there were no referrals to a geneticist or handouts about early intervention. 

The work it takes to find that information when you are utterly clueless about the jargon and keywords to use while searching is no easy task. I quickly learned one of the huge differences between parents and caregivers:

Educating yourself and staying on top of disability rights, resources, and services is essentially a full-time job. 

Forever an overachiever, I immersed myself in all things disability. I signed up for every training and conference I could find. 

I learned about early intervention, waivers, individualized education plans, special needs trusts, transition services, and state advocacy efforts. 

Why Acting Early Is Important

While Arlo was still a toddler, we had established a special needs trust, whole and term life insurance, and a will. I got him on a waiver waiting list. 

I appealed the decision when he was denied, and eventually, he got a waiver.

When my family decided to relocate to upstate New York, I researched school systems, updated his IEP, and scheduled appointments with his medical team so that we had all the documentation needed to apply for a waiver the moment we arrived in New York state. 

Since my son’s medical complexities are many, I was in touch with his former medical team in Virginia while establishing a new team of specialists in our new home. 

Once those urgent needs were handled, I started looking at general life planning for Arlo. How do we cultivate meaningful friendships? What extracurricular activities are right for him? 

How do I help Arlo break out of his comfort zone? What should we be doing now to prepare him for the future? 

You Can’t Always Plan For Everything

I was on it!

Until his pediatrician called to inform me that routine labs (annual blood work is recommended for children with Down syndrome and other conditions) revealed his platelets were low. 

This can happen after an illness, so we checked again. Even lower. 

We then conferred with his team at the Down Syndrome Clinic at Boston Mass General. They recommended Arlo see a hematologist. 

I was worried, but also just going with the flow. We’d been through so many medical ups and downs with Arlo over the years. 

Heart issues (that thankfully resolved without interventions), glasses, hearing loss, hearing aids, asthma, repeat pneumonia, sleep apnea, tonsils removed, adenoids removed (twice), laryngeal cleft repair surgery, ear tubes placed and later removed, immune system deficiencies, severe anxiety, elopement, ADHD, and more. 

But when this new specialist said Arlo needed a bone marrow biopsy, it hit differently.

The doctor was concerned that Arlo’s low platelets could be due to myelodysplastic syndrome or MDS. 

It’s a type of pre-cancer in bone marrow that prevents blood cells from maturing properly. 

And according to “Dr. Google,” the life expectancy for someone with low-risk MDS is around 5 years. 

Waiting for that biopsy and later the results were torture. 

Trying to function and carry out everyday tasks with that level of fear and heartache fundamentally changed me. 

Witnessing a phenomenal team of doctors pull bone marrow and a chunk of bone out of your child’s leg as they explain every step is surreal.

Flexibility And Taking Things Day-By-Day Are Also Important

We spend so much time looking at how to support our children over their lifespan that sometimes, we cannot see the forest for the trees. 

As I contemplated my life without Arlo, I was broken and empty inside. 

Suddenly, the day-to-day struggles didn’t matter. 

I went from pushing him to venture outside his comfort zone as part of this unspoken 10 or 15-year plan of helping him live the life he wants “one day” to just being together in the moment and getting through that day. 

This is a common pressure put on parents and caregivers. 

We think our job is to support them in becoming contributing members of society. But what does that even mean? 

I’m sure we all know of plenty of non-disabled folks who aren’t “contributing.” 

Why do we focus so heavily on the contributions of disabled people?

Arlo’s biopsy revealed that his bone marrow was functioning properly. 

His platelets are still low, and we don’t know why, but it’s currently not life-threatening. 

Instead of annual blood work, he gets a jab every 2 or 3 months, and I hold my breath each time as we wait for results. 

While I will always be a proponent of planning, I’ve learned the hard way to choose carefully what plans you invest time and money into. 

Flexibility is everything; there will always be curveballs. 

Important Things I’ve Learned

Financial:

Special needs trusts, life insurance, ABLE accounts, and retirement savings are all important. 

But what about general investment accounts where you can take out funds without being penalized?

One of the first things I thought about when we thought Arlo might have MDS was taking a leave of absence, tapping into our savings, and escaping to an island for a few weeks.

 Often, we’re encouraged to set up savings systems that don’t allow for living in the now. 

Consider your family’s short-term wants and needs in addition to future planning.

Medical:

Anyone who is the primary caregiver to someone with a disability should prioritize establishing a trusted team of specialists and remaining a current patient. 

Maintaining annual appointments might seem like a waste of time when seemingly nothing changes. 

Trust me, it’s not. Getting in with a specialist as a new patient can take months, if not years. 

Therapies:

Early intervention is a tremendous resource. 

Setting your child up with a private occupational therapist, physical therapist, speech-language pathologist, etc., can be hugely beneficial. 

However, the goal shouldn’t be to “fix” your child. It’s to enhance their quality of life. 

I wish someone had told me 12 years ago that more therapy wouldn’t make a noticeable difference. 

But playground time, naps, less stress, and experiencing joy as a mother can.

Self-Determination:

As caregivers, we have a lot of influence over our children. Ultimately, though, it is their life to live. 

LISTEN to them. And teach others how to listen to our kiddos who don’t communicate traditionally.

Our job is to plan for everything we can through an IFSP, IEP, life plan, or whatever documentation is thrown our way. 

The key is to allow for flexibility and be sure that flexibility is woven throughout those documents. 

That way, we can be prepared for changes that inevitably happen faster than the time it takes to arrange that meeting to change an IEP.

Fun:

Our lives are so complex and full that just getting through each day is an accomplishment. 

It can be so incredibly hard. Maybe we should consider prioritizing fun and joy in our planning. 

The challenge here is ensuring you’re not just planning fun things for other folks in your life but ensuring that the fun plans bring YOU joy, too! (Now, if we could figure out what that magical flying unicorn of fun and joy is …)