Our Mommyhood

By Amy, Guest Writer, The Adventures of JAMC

And so it begins.  You stare with starry-eyed wonder at your newborn, and feel something wonderful stir within you.  So many plans and ambitions run through your head for this little one who has immediately taken your heart.  But…what if your plans are changed?  What if the bright and perfect future you plan for him is unable to happen, due to reasons outside your control?  What if you fast forward to a time when he’s three years old, and he never socializes with other kids?  What if he prefers ceiling fans or cars to people?  What if you find out he’ll lose the ability to run in his 20′s and will be in a wheelchair by his 30′s?  What do you do then?

This happens every day to moms all over. Their children are diagnosed with an illness or a disability that affects the way their life will be lived.  For our family, it was Asperger Syndrome (on the autism spectrum) and Becker’s Muscular Dystrophy.

I can’t even begin to truly describe the range of emotions you go through when your child is diagnosed with something like that.  Initially I felt relief, because I knew what was wrong – finally! – after the family doctor dismissed my feelings that something wasn’t right.  Then anger, denial, grief, resolve.  So many feelings you don’t know what to do with them!

One of the worst feelings is knowing that you have to change the way you think about your child’s future.  It certainly doesn’t mean that great things won’t happen for them, don’t get me wrong.  But you DO have to go about things differently.  And, with many disabilities, there are things your child will never be able to do.  For example, with Muscular Dystrophy, my son will not be able to pursue sports seriously.  With Aspergers, social situations for both of my sons are extremely difficult, and always will be a challenge.  Life won’t ever be typical, which is so heartbreaking for a parent to realize.  Again, what do you do then?

Have you ever heard the expression, “Life is what you make of it”?  Let me tell you, that expression is definitely true.  It will be difficult, but you CAN take control of the situation and work with it.  Maybe the goals are different, maybe accomplishments that you cheer over are simpler, but you can do whatever it takes to help your child.  Here are the top five things that have helped me to help my boys:

1. Gather your troops! – Whether it be friends or family, keep your support system close at hand.  You WILL need them.  Everyone needs support, no matter how strong you think you are.  Let those close to you know what’s going on, and give them information so they can learn about your child’s disability.  Trust me, you’ll need shoulders to cry on from time to time.
2. Allow yourself to feel all those feelings -  As I mentioned, you’re going to go through a lot of emotions.  Yes, you need to be strong, but don’t keep everything all bottled up.  It’s OK to feel grief over the “normal” life you may feel your child has lost.  It’s OK to be angry that your family has to deal with this.  Just make sure you’re expressing those feelings in a healthy way.  For me, blogging does the trick.  I get those feelings out in my posts, and then I feel much better.
3. Research! - Admittedly, I was a little slow to start researching my options.  I listened to what the doctor said and trusted I was getting all the information from her, but I wasn’t.  By reading and seeking out other parents of children on the autism spectrum I have learned so much more!  And I continue to learn.
4. Fight! - I am not an aggressive, go-getter type, but I have found my inner warrior!  For us, the fight is mostly with the school district, and helping my son to get what he needs to succeed.  No matter what the battle, don’t be afraid to stand up for you child if you know something will help them.
5. Find a community – I was really reluctant to join a parenting support group.  I just have a hard time meeting strangers.  Only recently did I finally join a group, and you really can learn a lot from other parents who have already experienced what you’re going through.  Plus, you can get ideas.  Other parents have great ideas for dealing with behaviors, or maybe a great recommendation for a therapy or doctor.  As much as your friends and family are there for you, they probably don’t have that type of knowledge, unless they have been through your situation.

It can be so hard to take charge of such a difficult situation.  Especially if you’re not normally a take-charge person.  But, I promise you, it helps.

Plus, if you strive to look for the positive, you’ll feel even better.  I look at my boys and I see how wonderful they truly are.  I see my boys and all their wonderful quirkiness.  Yes, I have bad days.  Days when I call my mom or mom-in-law crying.  Days when my kids frustrate me so much I have to go to another room and cool down.  But, because I force myself to be positive and take control, I am able to get myself back on track.  As moms we are strong and resilient, at the same time that we are loving and nurturing.  I truly believe we ALL have the strength, somewhere inside us, to get through life’s challenges.

What helps you to find that inner strength when life hands you a challenge?

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