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5 Essential Tips for a Soon-to-Be Special Needs Mom

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I walked into the conference hall and stopped at the welcome desk.  After getting my packet and name tag I headed into the main lobby. I saw familiar faces and we exchanged hellos. DD (my nickname for my dear daughter) was with me and was working the crowd already. I made my way to the hors d’oeuvres, made a plate for DD and looked for a place to sit. I spotted an empty seat and another familiar face. I sat there… and then I saw you.

You were making your way over to the same seating area. Suddenly I didn’t feel so tired.  I smiled at you and asked, “Are you feeling okay?”  You said, “Yes. About three weeks to go,” with a smile and a rub to your stomach.

“Is this your first child?” I asked.

“No,” you said. “I have two others. This child has Down syndrome and we came to the conference to get a little information. Trying to prepare, you know?”

You smiled at me. I smiled back and nodded my head in agreement. I knew very well. I knew very well.

After talking for a bit you told me you were a speech therapist and you knew sign language as well. My heart smiled more than my face ever could. “You will need these skills,” I thought to myself. I told you you were doing a great thing in trying to learn as much as possible beforehand. “The best bit of advice I can give you is to live for each moment because they will change,” I said.

Perhaps you knew what I meant. You will certainly find out very soon. I looked up and DD had yet again abandoned her chicken wings because there was music nearby. Before I knew it DD had hijacked the opening reception. You smiled and laughed with me.

These moments are the ones I speak of. Here are a few more nuggets of wisdom I have gathered over the years.

1. Don’t be afraid to cry.  There will be times when you cannot turn the faucet off. Don’t try. Let those tears flow freely. They will give you strength you didn’t think you had. These will not always be tears of sadness or of the unknown. They will change as your little one grows. Your tears are nothing to be ashamed of. We’ve all been there.  Sometimes, I’m still there. Know it’s OK and don’t let anyone tell you otherwise.

2. Parent in the present. I noticed your name tag was pre-printed. You registered beforehand. There will be times when your best laid plans will be thwarted due to some unforeseen opponent you may never discover. That’s OK, too. Give your little one what he needs at the moment. Follow his lead. Be a hug ambassador. Make the rules as you go along. This journey will be more like your previous parenting experiences than not. The small nuances that set them apart may seem vast, but remember your efforts will always pay off in some way. You will doubt yourself at times. Know it’s OK and don’t let anyone tell you otherwise.

3. Family doesn’t always mean family. There may be times you feel misunderstood by blood relatives and friends alike. They may not understand why you cancel plans at the last minute or can’t return a phone call promptly or couldn’t go to a specific restaurant for dinner. Or why your phone has twelve specialists on speed dial. Or why you may get to a function late. Trust you have a new family of people who get it.  We understand everything and more without a word being said. Know it’s OK and don’t let anyone tell you otherwise.

4. Accept help. Your husband offered to take a photo of me and DD. Instinctively I said no at first, never wanting to “bother” someone. I’m a culprit of this myself, but it’s important to know you can’t do it alone. There are angels dispatched among us to help. Let them. They may not be in the form you think, but let them. You will need them. Know it’s OK and don’t let anyone tell you otherwise.

5. Enjoy the ride. I sat next to you again the next day in one of the workshops. You seemed tired. Get ready because it’s just beginning. Just know this is the best tired you will ever feel. You’ll be great. Know it’s OK and don’t let anyone tell you otherwise.

Welcome to the family, RK.  Nice to meet you.

A version of this post originally appeared on Countdown to K.

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Originally published: May 1, 2015
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