We’ve walked a long, windy, bumpy road with Josiah since 2002.  I vividly remember not being alarmed when we learned he would have Down syndrome.  I truly felt Josiah would just have a few extra hurdles to jump over.  With four typically developing siblings as built-in role models how hard could it be?

I love a challenge.

But, had I known how overwhelming, turbulent and exhausting life would become I don’t think I would have been so optimistic.

Here are some key takeaways that may help others just beginning this journey:

A baby born with a disability is a baby first and foremost.  Love and enjoy your precious baby!

If you prefer not to share your child’s disability with the world right away, don’t.  You don’t owe any explanations to anyone.  Allow time to grieve if that’s where you find yourself.  It’s a normal and natural part of the journey and it too will pass.

Know this…people who love you will love your baby!

Trust that God has the plan and the purpose.  He will provide wisdom and guidance as it’s needed.  Knowing this makes all the difference in the world.

Comparison is the thief of joy.  Your baby is a gift, handpicked just for you!  Live with blinders on and refuse to compare milestones with others.

You will need support.  Maybe not now, and maybe not for years to come, but mark my words, you will need support.  Prepare for that now.

Learn about the resources, programs and supports available to your child.  You may be exhausted and still reeling from the shock of having a baby with a disability.  If you aren’t up to the task, find someone who is and learn, learn, learn.

If your state has a waiver program to provide caregivers or attendants to come into your home to care for your child, sign up asap!  This should be a high priority item.  Some states have waiting lists of 14 – 20 years or more before services can be delivered.  The earlier you sign up the greater your chances of getting help when you need it.

Look for the blessings.  They are there.  Celebrate each accomplishment with enthusiasm and joy!

A positive attitude is a game changer.  Adopt one!

This is HUGE – surround yourself with others walking a similar path.  They will be a lifeline when life gets hard.  Most likely they have been where you are and understand better than even well meaning family and friends.  They will be there for you no matter what you walk through. They often have the wisdom you may be seeking.  They are your tribe.  Find them!

Take care of you!  It is not selfish to carve out time for self-care.   Create boundaries and establish routines that give others a chance to step in and offer assistance.  It brings them joy and provides an opportunity for you to rest.  Your family needs you to be at your best.

Become an expert in your child’s disability.  Learn everything you can to help your child live his/her best life.

If you neglect to get your child into a specific program or therapy before a certain age, don’t believe the myth that the window has closed and it’s too late.  Your child can and will learn at all ages and stages of life.

Remind yourself that you are doing the very best you can given your situation and your resources.  God chose you for this child.  Trust Him to provide exactly what is needed.

Humor makes even the darkest days bearable.  Find something funny in the chaos and laugh about it.  If you can’t, then listen to a show that brings you joy.

Sing!  I can’t stress that enough.  Singing changes things.  Make up silly songs to familiar tunes and sing your way through challenging moments.  Or put on upbeat worship music and sing along!

Remember that this too shall pass.  The struggles of the moment won’t linger forever.

Never underestimate your child!  Potential knows no boundaries.  Provide opportunities to try new things, to learn new skills, to expand horizons.  If you believe in your child, affirm and encourage them, they will make strides greater than you ever thought possible.

If you have a non-speaking child, talk to them just as you would anyone else their age.  Presume competence!  Non-speakers are highly intelligent!  They have the same thoughts, feelings, hopes and dreams as others their age, but may lack an effective way to express themselves.

If you have a non-speaking child, research AOS – Apraxia of Speech.  Learn everything you can about S2C – Spelling to Communicate, RPM – Rapid Prompting Method, Speller’s Method or Facilitated Communication and do not rest until your child is working towards a functional form of communication.  You may be astounded at what your child understands.  What they look like on the outside, to the rest of the world (including you) is not who they are inside.  They are trapped in a body that betrays them. They need you to fight for them to be able to acquire communication.

Read that last paragraph again!  Help your child acquire communication!  There are YouTube channels, books, social media posts, blogs, podcasts and more on the subject of Spelling to Communicate.

Even if you’ve tried using pecs or an iPad with a communication app,, pursue a functional form of communication.  Using a single word here or there to meet immediate needs does not equate to meaningful, robust communication.

Become an advocate for your child.  Pull out that mama bear or papa bear inside of you and get to work.  No one knows your child better than you.  There is not a doctor, therapist or specialist alive who has greater wisdom than you do regarding your loved one.  You do not have to take their advise as truth for you.  Speak up when what you are being told feels wrong.  Trust your gut and advocate for your child’s needs.

If God called you, He will equip you.

If you aren’t up to it solicit another willing parent who gets it.  Hire a professional advocate if you have to.  Whatever it takes, be the champion in your child’s corner, shining a spotlight on the amazing wonder and uniqueness he/she brings to the world.

Create a group of people who know and love your child and your family.  Invite them to join a Personal Support Network.  Meet a few times a year to share updates and request help as needed.  Different members bring various abilities to the table and will be able to take on some of the tasks that may be overwhelming for you in the moment.  Allow others to be there for your family.

Your child is a blessing.  Keep that perspective.

If you’re navigating challenges no one else around you faces, adopt a slogan to help guide and sustain you.  This is mine.

We’ll walk the road less traveled together!