It’s been a while since I wrote a more personal post, especially in the “Pastor Mom” category, but here’s something I’ve been thinking about.

 

Being a mom of a child with special needs is an ego-humbling experience. Parents always have big dreams for their kids—even if our dreams are “for them to grow up and be whoever they want to be,” that’s still a pretty big dream to help give your child as many opportunities as possible to be whatever they want to be.
When my son was born in July of 2008, it was right before the Summer Olympics in China. Both my husband and I are tall and our son was 22 ½ inches long. While nursing in the wee hours of the August mornings soon after his birth I watched the Olympics live and I remember thinking maybe my son would be a champion swimmer someday—after all, he has the build of Michael Phelps (tall, long body, flipper feet). Since we moved to Oklahoma and the heart of football country, “all-star quarterback” has been thrown around, too. Athletics aside, both of his parents are clergy with master’s degrees, and we could see him following in the family footsteps—or becoming a teacher, or professor, or scientist—or, eventually, whatever he wants to be.
Around twenty months, we noticed that AJ’s verbal skills were not on par with other children his age. At first we just thought he was a little behind as an only child having moved across country, but then we stopped hearing the few words he had used. He stopped using the baby signs that we had taught him. He began a lot of odd, repetitive behaviors, such as stepping up and down the same step over and over, lining up blocks on the arm of a couch and running by, looking at them out of the corner of his eye. He no longer answered when we called his name and seemed to be lost in his own world. Yet at the same time, he learned the alphabet by himself, and now knows numbers 1 through 13.
We had AJ evaluated by Early Intervention and he began speech therapy almost immediately. The talk of “autism” came up at that time. It’s been almost a year and we still have no definite answers. It has been a struggle to sift through the vast amount of information on autism, yet that overwhelming information for me has caused mainly overload and has not gotten us any closer to understanding what exactly is going on with AJ. We have struggled with knowing who is the right specialist for our child and what direction we want to go with his therapy and care. We sought out recommendations from other parents and autism networks online, and decided that we wanted a more thorough approach with a behavior specialist. We now have an evaluation scheduled next summer with a pediatric behaviorist and neurologist, language therapist and psychologist, all in one appointment, to have a team approach. We feel this would work best for AJ.
At the same time, speech therapy has been amazing. We have a great relationship with our son’s speech pathologist and I’ve learned as much from her as AJ has. Our son is now able to communicate with us at a basic level and knows many words. Socially, he is learning how to be with other children and enjoys the company of other children even if he doesn’t directly engage them. And now and then, we get that eye contact we have been dreaming of, acknowledgement that yes,
But I’ve had to let go of my ego in the process. I’ve had to let go of the child I dreamed of having as well as the mother I dreamed I’d be. One friend wisely advised that I needed to grieve—grieve the loss of the dreams I had for my child. Now I need to be the mother for my child, for AJ, exactly who he is. It’s been a humbling experience. As the old saying goes, you do just have to take one day at a time. I can’t worry about the future parent-teacher conferences, or testing for course placement, or wondering if he will be able to go to college. There’s also the possibility that we will go through all of this and he will turn out to have simply had a speech delay, but I can’t hold on to that, either. I can’t get caught up in worrying, or dreaming, about his future. I need to be his mom, right here, right now, and enjoy being a mom of a toddler, and let go of my ego that wonders and worries what he will become. All in all, he will be AJ.
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2 Responses to Mom Ego

  1. Bob Baril says:

    Wow, Mindi. Thanks for sharing that. There's SO much I could say to that I could write several blog pieces, myself. AJ is very blessed to have you for a Mom. I don't talk about this often, but I was a disappointment to my parents, especially my father. I know I wasn't "what they wanted". My own son Jon has Aspberger's tendencies. (He has not been formally diagnosed.) Jon is a college grad and has a very high I.Q. but he still lives at home, works part time, and likes it that way. He can write rings around me, and play lead roles in Community theater, yet has a phobia of talking on the phone, fears having to have business type conversations with strangers, and does not drive. I have taken a lot of "flak" for this; esp. as my denomination wants to move us out of the house and can't accept why Jon is not on his own. It's still early for AJ. And who knows what God will do in and through him. People may not understand this but I'm very proud of my very high achiever Amy who is just weeks from becoming a first-time Mom, and I'm equally proud of Jon. Listen, I'll pray for AJ. Stay in touch about this. I'll also ask Amy in MO to pray for AJ. She's a pediatric nurse with a huge love for kids and lots of compassion for kids in need. And, Mindi, again, congratulations. AJ is blessed to have you for a Mom!

  2. Rev-o-lution says:

    […] can read part 1 here […]

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