To New Parents of a Child With Special Needs

To those of you just starting on your new journey with a child with special needs, I've been where you are.  I've walked in your shoes.  Looking back, there are many things I wish I had known.  Hopefully my experiences can help you side step some of the pitfalls that we encountered along the way.

(1) Listen carefully to the doctors and professionals - 

If you are in the early stages of your journey, you are probably overwhelmed, scared, and seeking answers.  It can be hard to really hear what the professionals are telling you.  We discovered that when meeting with specialists, it is better for two of us to attend the appointment.  If one of us can't get off work, we try to get a member of our "inner circle" to go with the one of us who can.  Two ears are often better than one pair.  Sometimes we interpret or remember symptoms, experiences, or information differently.  The specialists get a better picture of what is really happening with our son when they have complete and accurate information.

As you listen to those professionals, take notes.  Keep a notebook or journal.  Write down the name of everyone who speaks to you.  What did they say?  What did they diagnose?  What did they prescribe as treatment?  What is the next step?  Who do you call?  Will insurance cover this?  Who do you contact to confirm appointments, insurance, or information?  Who is your first contact if you have questions or concerns?  A notebook is your go-to-source of information.  It can be your reminder list of questions/concerns that you want to address with the professionals.  It will be your reference source when you get home and feel overwhelmed and forget everything they told you at the appointment.  It can be your list of follow up questions and concerns for the next appointment.

(2) After an appointment, clarify what was said and your general impressions

Specialist appointments can be a long drawn out affair that leave you exhausted and a bit in shock. Others are are a whirlwind, get you in and get you out scenario.  Regardless of what kind of appointment you experienced, it is important for you to share your impressions.  What did they say?  What were you told?  What were your impressions?  Do you agree or disagree with the information you received?  This is a really important step because it helps both of you to clarify the experience that you shared.  It helps to ensure that both of you clearly understand what was said and what you are to do next.  This is also a great opportunity to share how you are feeling about the experience.

(3) Listen carefully to yourself and your instincts

You know your child better than anyone else.  TRUST YOURSELF!!!  You know when your child is happy or unhappy.  You know when your child is healthy or sick.  You know when something is working and when it isn't.  The worst mistake I made through our journey with my son was doubting myself and my instincts.  The few moments I feel like I let him down were when I didn't listen to that voice inside and act as an advocate to push for what I knew was right.  Fortunately, I learned from those mistakes.  I listen to what the experts tell me.  They are highly educated and experienced.  I respect that.  I also recognize that I am the ultimate expert in my son's life.  No one will ever know him better than I do.  Learning to trust myself and be an advocate for what needed to be done has made all the difference.  

(4) Become an expert on your child and his/her condition

In the day and age of internet technology, it is easier than ever to educate yourself on a topic.  When the professionals give you a diagnosis or mention a treatment, google it.  Research it.  Read everything there is to read on the topic.  ASK QUESTIONS.  If you don't understand, ask more questions.  I will caution you to use vetted sources of information such as John Hopkins, The American Cancer Society, local universities and colleges.  Run away from internet extremists and dramatists.  They only add to your anxiety and muddy the waters.  Become an educated expert on your child.  The professionals will quickly learn to respect you and value your opinion.  

(5) Make time for your spouse or significant other

One of the worst mistakes I made along our journey was assuming that my husband and I could pick up where we left off before our son was born.  He had to be our number one priority.  We came so close to losing him.  He became all that mattered.  Unfortunately, marriages don't thrive through neglect.  As we focused almost exclusively on our son, we started to drift apart.  We started to see things differently.  We quit working as a team to make things work for our son and for our family.  Our tunnel vision almost cost us our marriage.  That probably would have cost us our son.  Raising him is not a single parent endeavor.  It takes a team.  We had to work as a team.

Fortunately, we woke up before it was too late.  We recognized what was happening and what was at stake.  We started to make time for us.  Not long expensive, romantic get-aways.  Not roses and candle light and fancy meals.  When you have a child like ours, who really has the time, energy, or money for that?  Instead, we committed to talk one-on-one to each other a little each day.  We try to go out to dinner at least once a month.  When a new movie comes out that interests us, we try to make a movie date.  Sometimes we just go for a nice walk together.  The point is to make time to recognize that you matter to each other.  Utilize your resources.  Find those in your inner circle that will cover for you for an hour or two.  Learn to trust that others can also do for your child.  Learn to trust others.  Give up some of that control.  Your marriage will definitely benefit.

(6) Enjoy the journey

If you are in the early stages of your journey with your child, this probably makes you want to snort in derision or cry your eyes out.  I understand.  I've been where you are.  Seeking a diagnosis.  Looking for answers.  Praying your child will live through the next year.  Looking at an uncertain future.  Hoping you're up to the challenge and sure that you probably aren't.  What you are facing isn't fair.  You didn't ask for this.  You just want things to be "normal".  I know.  I've been there.

I can also tell you nine years down the road that it gets better.  You are up to the challenge.  What you are facing now will make you stronger.  It will make you better.  You will find joy where you never expected.  There is beauty out there that you never would have seen.  Your heart will be touched with love that you didn't know you were capable of.  

Find your joy.  Find your beauty.  Find the very best you... and trust yourself.