Through The Years

If you’re anything like me, long before we become mothers we dream about, plan for and anticipate our children.  We have expectations of what they’ll look like, the milestones they’ll accomplish, what they’ll be when they grow up....all the things.  We share those dreams with our friends and celebrate as each of us becomes mothers, it’s a club we all want to join.  The playdates, the sports, the school events...we’ll share in the sisterhood!

So, when we have a child that is born with or acquires the need for more support, physically, mentally, or emotionally, it can really upend our plans.  Sometimes our children don’t look the way we dreamed, they don’t accomplish the milestones as expected (or at all), there are no playdates or sports teams...we can feel alone.  We have so many questions, we have so much to learn.

But as mothers, we are resilient and resourceful creatures.  And we are ferociously focused on helping these little humans thrive.  During the early years, we find doctors and therapists, haul them around to appointments and learn how to care for them at home.  The effort can be exhausting and consuming.  You need support mom, just like you are finding for your child.  We can’t take care of them unless we take care of us!

The early years

Find your people.  There are support groups for special needs moms, either online or in-person that are full of moms just like you that can fuel your soul when you are tapped out.  They offer advice, lend an ear, and are the best resource library ever!  Get involved, it might be hard at first, but it helps to have a community! 

Set up some sort of self-care routine.  This doesn’t have to involve fancy salons, or expensive trips (but kudos to you if you make that happen), just something non-negotiable that makes you happy.  I take an hour after bedtime to watch a show I recorded, read, or play a game on my phone at least 3 times a week.  I schedule a time to work on crafts at least once a month.  And I sneak a pedicure in every 6 weeks.  If you’re having a hard time letting go of mom guilt then start slow but stick with it!

The school years

School can be just as traumatic for the special needs mom as it is for the child.  It doesn’t have to be hard.  There are supports and services for children starting from preschool all the way through high school, and possibly to the age of 22.  It starts with an evaluation you can ask for from the school or sometimes the school will suggest it.  The process can be intimidating but there are community resources available to help or you can hire a professional IEP coach or advocate to walk with you through the entire process.  It’s very important to have a support system, even if it’s just a friend that’s been through it before.  Visit www.dianaprowitt.com for resources and information to make navigating the IEP process easier.  Help is out there, take it!

If your child has an IEP remember; the purpose of the IEP is to prepare the child for further education, employment, and independent living according to their unique needs.

You may find alternative solutions if your child isn’t able to participate in sports or other extracurricular activities.  You can ask your IEP coach, case manager, or contact your local human services office for resources like camps, clubs, and social groups in your area.

Most colleges and universities offer supports for disabled students, some of them are incredibly accommodating and inclusive!

Adulthood

I haven’t gotten this far yet in my journey as a special needs mom.  My path might not look like yours, there are many things to consider though.

Will your child be living and working independently or will you need to plan for this?  You may need to apply for guardianship, acquire social security, look for alternative residency, start a trust, etc...  You can spend the time researching on your own but I would hire an experienced attorney to handle most of this.

I know it’s a lot mom but between all of the details, there is joy and love and celebration!  The most important thing I did early on is to give myself permission to grieve my broken dreams then move on.  I dropped my expectations and learned to enjoy my new adventure.  I marveled at this precious new life and I will continue to be amazed at what he AND our family can accomplish!