Why Being A Special Needs Mom Isn't Something to Fear

I overheard two expectant mamas talking in a Chick-fil-A play area.  They sat together on one bench, oblivious to their older boys playing together, and they each were expecting a boy.  I watched my kids play with these soon to be big brothers.

These mamas chatted about due dates, pregnancy woes, and pediatricians.  And then the conversation took an unexpected turn.  One of the mamas confessed that she's constantly having fears that something will go wrong with the baby.  It even keeps her up at night.  What if something happened during the birth?  What if her child has special needs?

And the other mother joined in, that it's something she worries about too.  Then she added her own "what ifs?" but I tuned them out because my mind started whirling.

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Scriptures and Prayers for my Children

I've prayed more prayers for my boys than I could even count. Sometimes they're a quick, "Oh, God, give Kiddo focus during speech today," or "Heavenly Father, bring peace to Little Brother's heart right now," when he's in the middle of a temper tantrum.  Sometimes they are prayers about therapies to start or discontinue, or about good behavior and awesome results at an evaluation or a speech intensive.  Sometimes it's a quick "Help them come to know you Father."

I've also prayed desperate prayers.  Prayers for Little Brother's life, when at 17 weeks pregnant with him I needed to have my appendix removed pronto and the surgeon said so matter-of-factly, "of course there's a risk you will lose the fetus in surgery."  (Side note, I hate that term 'fetus'.  It's a baby folks.  In this case, my baby.  End side note).  Hubster and I, family and friends and members of our church prayed and prayed that God would spare us both.  And obviously, He did.  I call Little Brother "my little miracle."

I've prayed desperate prayers for healing.  We've brought Kiddo to the altar at church numerous times, had our pastors lay hands on his head and pray for his hearing, his speech, his complete and miraculous healing.  Hubster and I pray for both kiddos and their speech and their healing.  We have friends and family and members of our church praying for them too.

But a year or so ago, I started turning to Scripture to find passages to pray.  And a few of those are what I want to share here.

Parenting Expectations

I always knew I wanted to be a mom.  Sometimes I'd imagine what it'd be like, and think of the values I'd teach them, the things we'd do together, the places we'd go.

I was an English teacher for three years.  I could usually tell by the end of the first week of school which parents were the type of parent I wanted to be.  Their kids were the ones who would read with fluidity, which meant they had been read to as a child.  A lot.  Their kids were the ones who always had their homework turned in, their papers signed, their boxes of tissues turned in.  They were the parents who showed up at Back to School Night to meet the teachers and see the classrooms and smile at their kid's handiwork.

I sat in on a few IEP meetings as a teacher (that's an Individualized Education Plan for those that don't know).  In some of the meetings parents would ask for specific accommodations and goals for their children.  I admired that, but honestly knew there was no way I could meet all the accommodations, when I already had 130 students with diverse needs and interests and learning styles.  There were also some meetings where the parent sat there, looking lost and afraid.  Those meetings were always faster, easier, but I felt bad for those parents, for that kid we were meeting about.

But now, I'm a parent.  One who sits in IEP meetings for my own children.  Yes, children.  Both kiddos have IEPs now.  And basically, there's a lot of things I didn't imagine or expect about being a parent.  I didn't expect to be sitting on the other end of the IEP table, fighting for more accommodations, more specific goals.

I didn't expect my life to revolve around so many appointments.

I didn't expect that physical therapists, speech therapists, occupational therapists, audiologists, ENTs, nutritionists, and other specialists would be people I'd ever have to see, let alone as frequently as I do.

I didn't expect my spare time to be filled with researching supplements, therapies, speech games and techniques, etc.

I didn't expect to spend thousands of dollars on therapies, supplements, educational books and materials, conferences, camps, etc each year to teach my child what comes so easily to other children.

I didn't expect to find play dates so dang hard.  1) Because when do you squeeze them in when you have anywhere between 5-9 appointments a week?  And 2) with who do you meet for play dates?  When do you have time to maintain friendships?  And 3) why would I want to torture myself?  I mean, I've been known to cry on the way home from play dates, because I can see how far behind my kiddos are from their peers, or even kids two or three years younger than mine, and it hurts to see that.

I didn't expect that seeing kids saying and doing things so effortlessly and adorably could make me feel so sad and defeated.

I didn't expect to feel so overwhelmed, anxious, defeated, exhausted, lonely and uncertain.

I didn't expect I'd know and experience acronyms and words like ABR vs. OAE, apraxia vs. dyspraxia, expressive vs. receptive, proprioception and vestibular, prosody and articulation, bilabials and velars and alveolars, ideation and motor planning, and a ridiculous number of other words, including schwa.  Yes, schwa is a real word, and I think about all these words daily.

I didn't expect I'd be on Facebook for the support groups rather than for seeing what friends and family are doing and what the latest trends and news are and posting my own cute videos and photos of the kiddos.

I didn't expect that I'd have more phone numbers of therapists and clinics in my contact list than friends and family members.  Or that I'd see them more than friends and family.

Basically, I didn't expect to be a special needs parent.

BUT, I also didn't expect that I would love these little guys as much and as fiercely as I do.

I didn't expect that I would be so stinkin' proud of them.  Of who they are and what they do, of what they're passionate about and gifted in, and of what they say.

I didn't expect that I would experience so much joy with every new word, every new skill, every new thing.  There's a reason I call every hard earned milestone a victory, and every new word or phrase 'sweet'.

I didn't expect to grow into a stronger, more confident person than I was before I had children.

I didn't expect that parenting would grow me so much closer to God.

I didn't expect to feel so much closer to my husband as we share in this journey together.

I didn't expect my children would be such a huge blessing and bring such joy to my life.

I didn't expect that being a parent would enrich my life, my purpose, my faith, my character as much as it has.

Though sometimes I wonder what my life what would be like if my kids were talking and playing and jumping like their peers, I honestly can't imagine it. I don't know anything except what I have in front of me, and I know my kiddos are awesome and I would do everything in my power to help them become all that God wants them to be.

I don't think any parent experiences all they expected of parenting. And that's what makes the journey so interesting.  Worth traveling.  Because it honestly exceeds your expectations.

Being A Special Needs Mom

I've read quite a few blog posts of special needs mamas saying what it feels like to be a special needs mom.  But none of them come even close to this.  Every word she says is something I've thought or felt at some point.  Beautiful.  Without further ado: Kristi Rieger Campbell reading "What It Means To Be A Special Needs Mom."