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Dear Parent of a Child With Special Needs

28 Oct

Dear Parent of a Child with Special Needs:Dear Parent of a Child With Special Needs

I have something to say to you.

I want you to take a deep breath.

I want you to stop blaming yourself (if you do).

I want you to know that on a day that demands much emotional, physical, mental, or spiritual energy to advocate or meet the needs of your child, if that’s all you do, you’re a rock star!

I used to tell myself my child’s disabilities were because I was depressed for a short period of time when he was young.

That I didn’t stimulate his brain enough.

That we didn’t color and do puzzles as much as I did with my other kids.

That I was to blame. I had a lack. I brought this on.

That I should have fed everyone more organic food and cleaned with natural cleaners—and lived on a farm.

That my few piles of disorganized mess were to blame for all executive functioning problems in all family members through several generations.

My if onlys?

If only I read up on all this during the early intervention years.

If only I had started our multi-tier therapies sooner.

If only I was more in touch the first time the depression hit at 3 years old and indicated a struggle within of which I had no knowledge.

If only I had eaten more kale when I was pregnant with him.

If only I hadn’t gotten in that minor car accident when he was 19 weeks gestation. I bet I shook his brain.

If only I had listened more the first time someone said his pencil grasp was light, his attention jumpy, his visual memory challenged.

If only I knew all the right words to say each year to every teacher and staff member on his team to unlock his heart, mind, and soul for them without making them feel defensive.

If only I could wear a cape and fly around to every therapy the minute he is dysregulated and beat down the cognitive and social-emotional dysfunction.

If only I could implement the five new suggestions each therapist wants us to try every week and spend 28 hours a day rocking awesome, dedicated, therapeutic parent.

If only I could figure out the triggers before they happen.

If only I had a degree in psychiatry, psychology, social work, special education, general medicine, behavioral optometry, behavioral medicine, and occupational therapy.

If only I could manage the rest of my household: cleaning, cooking, shopping, laundry, and parenting the other two children more efficiently to accommodate the volumes of time needed each day to see this child into healthy adulthood.

If only I prayed more, sought God more, blessed this child more.

If only I could clone myself to be a good wife, house manager, writer, friend, daughter, etc., while simultaneously meeting all needs of my special needs child.

If only I were God.

Hmmm.

Know the feeling? The one where you beat yourself up for every angle of this ongoing struggle?

Know what? God doesn’t want me beating myself up. He doesn’t want me guilt-tripping up the lane. He needs me healthy, rested, strong, calm, and patient so that He can equip me with each piece I need when I need it.

Here’s how to turn this thing around. Check out what happens when I flipped guilt on its head and heard God more clearly (and even if you don’t share my faith in God, consider the principles):

See that other mom I put in your life who has walked this ahead of you? Listen to her.

See that person who finds you approachable and just shared her deepest fears about her child? Yeah, I sent her to you because I knew you would listen.

See that really-hard-to-read neuropsych evaluation? Well, it’s concrete data to make it easier to advocate for your son.

See that area of maturity where he recognized something about himself and was able to work through it this time? Personal growth. You’re making a difference, Mama!

See that teacher expectation you thought was the end of the world and he would never get through? It wasn’t so hard this time.

See that moment of compassion in your other children? The time or two they aren’t busy resenting your investment in this child? You are building character.

See that group of people you now network with that bring you strength? They hold you up and offer ideas.

See that long list of specialists you were so fearful of trying to find and then maintaining the schedule? They each have a role in supporting your child.

Oh, fellow parent with a toe, foot, or your whole body, soul, mind, and heart in this special needs world:

I think you’re awesome!

You parent on a level that requires more creativity, more endurance, more on-the-spot thinking than perhaps required by another child in your home.

Your day may be monitoring seizures, checking blood levels, navigating social situations, life coaching through the basics of the correct way to eat or how to handle a misunderstanding with a peer, finding ways to connect with your child, explaining your child to others, overseeing therapeutic exercises at home, talking your child down from emotional explosion (or implosion), and disciplining in unique ways.

You walk a tight rope of when to intervene, how much to advocate, what to read up about, which specialist to see, which strategies are working, how to adjust diet and sleep patterns, which supplements and/or medication to try, and how to tend to the other members of your family in light of all of this.

Sometimes you can’t go into church.

You have to leave the grocery store when your cart is filled halfway.

You can’t drop off your 10 year old at a birthday party like other parents can.

You don’t go to concerts or amusement parks or even malls sometimes.

You’re not sure you showered or even ate breakfast today, but it’s 3 PM, and you made the calls to the school to check in.

You are some of the most heart-weary and physically tired parents on the planet, but you keep going. You know trauma.

Your child’s disability may be hidden or visible. It may be an obvious and embarrassing behavioral challenge or a silent mental health battle festering inside.

You may know it’s just not a good day for your child to have a playdate or try for the soccer team, but other parents may not understand.

Sometimes other parents think you hover too much and are over-vigilant. Others want to know why you aren’t controlling your child’s every move.

Some days your head is spinning, and on days when you find more rest or peace, you don’t trust it. You may spend all day wondering when the other shoe is going to drop.

You question yourself.

You question your child.

The doctors.

The teachers.

The diagnosis.

You constantly second-guess because sometimes things are not concrete and definite.

I want you to know you are not alone. If you don’t already have a support network, find other parents like yourselves. Your children may not have the exact same struggles, but I guarantee that you feel and experience many of the same heartaches and blessings every day.

Each child is a gift. The journey, no matter how complicated, does so much to refine us as parents. It changes our entire family in good ways and bad ways.

And yes, sometimes we need individual and family therapy to get us all back on track.

That’s okay.

It’s messy, tiring, painful, disappointing, and discouraging too, and it’s okay to be real about that.

By default and circumstance, we have become an amazingly resilient and creative group of parents. We know how to go with the flow more and deal with spontaneous crisis.

I didn’t play cars and color with my son as much as I did my older two children, but because he is so connected to nature and drew so much health from being outside, I have learned to notice caterpillar eggs and delight in the colors of the leaves. I discovered how digging soil works your muscles and heart, how planting and watching something grow offers hope and healing to an often misunderstood heart. I grew to savor the spontaneous laughter of a happy child coming out of a locked place of depression and anxiety.

What have you learned in raising your atypical child? I bet you see the world in more vibrant colors, ones you never knew existed.

Parents of Special Needs ChildrenDear Parent of a Child with Special Needs, I know I don’t need to tell you this, but you are an amazing gift to your child, even on your worst days. Your love goes farther than any educational plan or therapeutic intervention.

You keep on being you. You’re the you picked out to parent this child.

Get what rest you can, find some alone time, talk to a friend who gets it, and be kind to yourself.

You model the healthy self-esteem you want your child to develop. Like you, I struggle with that, but we need to trust we are the best people for the job.

Receive some love from others when you are stretched beyond thin, which may be your every day. Accept help.

But, dear parent, don’t waste time putting yourself down.

That energy is so much better spent focusing on the latest hurdle and celebrating the tiniest of blessings or progress in your child.

You are loved, Parent. You are noticed. You are making a tremendous difference. And you’re my hero.

With love and blessings,
Another parent just like you

*This blog has been shared at any link highlighted here: Mom 2 Mom Monday Link-Up, Make a Difference Mondays, Pick Your Pin TuesdayWomen With Intention WednesdaysGrace & Truth, A Little R & R, RaRa Link-Up, Me, Coffee & Jesus, Dance With Jesus, Blessing Counters, Coffee & Conversation, Saturday Soiree, Tell His Story, Find Stability, So Much at Home, Faith-Filled Fridays, Reflect His Love and Glory Link-Up, Bonbon & Coffee Linkup, and Christian Mommy Blogger.

More of my personal story of uncovering my child’s special needs can be found in Not Just on Sundays: Seeking God’s Purpose in Each New Day (includes Book Club Discussion Questions).

 

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14 responses to “Dear Parent of a Child With Special Needs

  1. ginabad

    October 28, 2015 at 3:58 pm

    That was a lovely post, thank you. I keep reminding these things to myself. It’s funny – since we gave up our focus on conventional therapies and focused on food intervention and homeopathy, I’ve felt much lighter. There are STILL plenty of days, though, when I think I should be doing it all / more, but I’ve calmed down enough to to make some changes: quiet enough to hear God’s voice and His leading, mellow enough to enjoy my life, open enough to have laugh and play with my kids. Took a long time to get here, but this is the kind of encouragement those of us raising kids with special needs..need 🙂

    Liked by 2 people

     
    • Bonnie Lyn Smith

      October 28, 2015 at 4:21 pm

      Gina, you came to mind as I was writing this…and many others I know. I’m so glad you feel at more of a calm place with all of this. We have been building our group of specialists, finding out more info, and now coming back down from years of investigation, culminating in an outside-the-school neuropsych eval. Yes, enjoying life and our kids…such a good reminder. It’s easy to lose sight of the fact they aren’t our “projects” but our relationships to enjoy and nurture. Thank you so much for sharing your thoughts! I really appreciate reading them! Blessings!

      Like

       
  2. Andrea

    October 29, 2015 at 4:51 pm

    This post not only speaks to parents of children with special needs, but also to parents who don’t have the perspective of raising a child with special needs. You are educating, advising, and modeling compassion here. Great article.

    Liked by 2 people

     
    • Bonnie Lyn Smith

      October 29, 2015 at 5:13 pm

      Oh, Andrea…that’s exactly what I was hoping for! Thank you so much for such great feedback!

      Like

       
  3. aladyinfrance

    November 3, 2015 at 8:47 am

    I have a lot of these guilt thoughts too for the various (although minor in the scheme of things) problems with one of my children. This was so helpful for me to read/

    Liked by 2 people

     
    • Bonnie Lyn Smith

      November 3, 2015 at 9:47 pm

      Thank you so much, Jennie. I have to talk to myself about this somewhat frequently, but eventually I’ll get it through my head. I love your picture, Miss LadyinFrance! 🙂 Blessings!

      Like

       
  4. sarah1

    November 19, 2015 at 8:34 am

    Thanks for sharing, Bonnie. It must be such a difficult situation, but God has put you in that role for a reason, and you are wise to realize that. He’ll never give you anything you can’t handle. You are learning a lot from it, and you are obviously growing closer to Christ through your experiences. Thanks for the amazing post!

    Liked by 2 people

     
    • Bonnie Lyn Smith

      November 19, 2015 at 8:03 pm

      Thank you, Sarah! What beautiful encouragement! I really appreciate you stopping by to be so ministering. It means a lot. I am soaking in your words. Blessings!

      Liked by 2 people

       
  5. Christi

    November 19, 2015 at 9:13 am

    I so needed to read this today. So….needed….to….read….this….!
    It spoke to me on a level no one has, ever. It is like some people don’t understand when I talk to them….they don’t see what I see and gloss over issues we have like they aren’t there. The guilt is time consuming isn’t it? But I choose to give that over to the One Who created my children and formed them in my womb….now I have more time.

    I really feel wordless, mixed and jumbled. I just wanted to say, I needed to read this today. I linked up from a link party I visited. The post on the Thankful Amish lady you met, (I guess the last post or next one from this?) is the one that brought me here. Then I clicked this post at the top of that one.

    I don’t know, I just wanted to say thank you and give you a cyber hug….

    Liked by 2 people

     
    • Bonnie Lyn Smith

      November 19, 2015 at 8:05 pm

      Christi, I had been asking God if I am making a difference in any lives, and should I keep blogging right now (we have a lot of difficult situations going on in our personal lives). Then I received your comments. I can’t tell you how soothing they are to me. I really appreciate you reading it and taking the time to reflect on it for me. So grateful we have a loving Heavenly Father to cling to and the warm hand of Jesus. Blessings on your similar journey….

      Liked by 1 person

       
  6. christfollower85

    January 14, 2017 at 6:11 pm

    This is now 2017 and I’ve come across your blog post. I hope whatever situation that you were in with you contemplating blogging or not is resolved. I sincerely am glad for this blog post. In September 2015 we started our special needs journey with son (ASD). Right now we’re doing ABA, and in the last 6 months I’ve pulled away completely from volunteering in the church , ( but that unsurprisingly has given me more time to study on my own and draw closer to Him), because I was home, I started blogging too. Just this week with multiple re-scheduled sessions, my husband was telling me we need to be stricter with the therapists because we have our own plans. All I could do was remember God leading me to leave active volunteering in the church to be more flexible and available for a session change.

    This post speaks to me on so many levels. Letting go of my guilt for not spending enough time with my neurotypical child and accepting help on the days I’m worn thin , and that it’s all right if I feel that way every day!
    Thank you.
    Vanessa

    Liked by 1 person

     
    • Bonnie Lyn Smith

      May 4, 2017 at 12:43 pm

      Christfollower85, I will check out your blog! I’m so sorry I just saw this. I plan to write more on special needs parenting soon, but thank you so much for encouraging my heart. The daily drain of parenting with a special needs focus can take a toll on us. Glad we are in this together! Blessings to you!

      Liked by 1 person

       
      • christfollower85

        May 6, 2017 at 7:51 pm

        Thank you for replying when you did. It wasn’t late at all. I had forgotten what I had commented on, but I needed to remember , and this was the perfect time. I hope you get to rest as you parent and be a wife, and that people come around to encourage you and lift you up. Keep writing and thanks for this article.

        Like

         
      • Bonnie Lyn Smith

        May 31, 2017 at 9:21 am

        Thank you so much! What beautiful encouragement! Blessings!

        Like

         

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