Thursday, April 12, 2012

Mothering a Special Needs Child

In recognition of Autism Awareness Month, I'm so delighted that the next segment of our Seven Questions interview series is a conversation with my dear friend Jennifer Diehl.  Jen is warm and engaging, with a million dollar smile that lights up the room ... and she's mom to a son who's been diagnosed with autism.

She's been thoughtfully candid as she's shared her heart.  And there's no doubt in my mind that you'll be touched by what you read.  My prayer is that you'll walk away from this discussion with your own heart more enlightened and sensitive toward families who live with these daily challenges.

Jennifer is a work-at-home mom to her three sons, ages 15, 13, and 8.  When she's not doing laundry, she enjoys reading fiction, scrapbooking, and trying out new restaurants with her husband.  In her dreams, Jen is the successful owner of a beachfront cupcake bakery.

And her son?  Derek's oh-so-captivating and smart, articulate and absolutely charming.  Without a doubt, he runs circles around any forecaster over at the Weather Channel.  And he's got his mama's blue eyes!

With my appreciation and deepest respect ~
Linda
 

1.    Tell us a bit about what it was like for you when your son received his diagnosis.
I remember feeling a bit stunned when we received Derek’s autism diagnosis.  Having had two other boys, we knew something was different with our third son (he didn’t have many words at 18 months and he often flapped his hands).  To hear the doctor come out and say, “He has autism,” however, was like a kick to the stomach.  I remember leaving the doctor’s office with Derek and driving to Barnes & Noble.  I needed someone, anyone, to make sense of the diagnosis for me.  Looking back, I guess the diagnosis wasn’t a complete surprise, but it was still difficult to process.  I vividly remember thinking that I would do anything to make sure he had the best life possible.

2.    How does his autism impact your daily routine?
Hmmm…this could take a while. J   I guess it’s safe to say that I worry a lot.  I’ve become a bit neurotic about list-making so that nothing falls through the cracks.  Every morning when I make Derek’s lunch for school, I count to make sure there are exactly five things in his lunchbox.  One day I forgot to pack his dessert and got a note home saying that Derek was very upset during lunchtime because “mommy forgot to pack five things.”  Ouch. 

My husband and I constantly worry that we’re not doing enough for our son.  Derek needs to be engaged constantly or he will retreat into himself and focus only on his interests.  We have to find things to do with him all of the time (my husband has logged more hours on the trampoline with Derek than I can count!)   My mind is constantly thinking of new ways to engage my son.  When he shows an interest in something, I research it on the internet and buy him books and toys that relate to his new interest.   When he was interested in the fifty states, I think we owned every book and puzzle that Amazon.com had for sale!

As a family, we don’t do spontaneity any more.  We plan out our days and have frequent “family meetings” to discuss our schedule.  Sometimes we have to write it out for Derek (we call it “making a chart”) so that he can see exactly what is coming next.  We’ve learned the hard way that when you tell Derek a certain time for an activity, you’d better stick to it.  He doesn’t do well with a deviation from the schedule.  When picking him up from school every afternoon, I try to never be late.  For someone who has struggled all her life with being on time, this is something that makes me grin.  I guess love really does change a person. J

3.    What's been your biggest joy?
Gosh, every accomplishment that my son makes fills me with such joy.  Listening to him carry on a conversation with his grandparents, after worrying for years if he’d ever be able to engage in back and forth communication, makes me happy.  Looking at his beautiful smile and hearing him laugh sometimes moves me to tears.  It has been amazing to see how our extended family and friends have embraced our special needs child.  I like to think that we are all more patient and gentle people, having lived with a child who demands a little extra care.

I also love it when someone “gets” Derek.  He has many interests, but never more than two at a time.  Right now, he loves to talk about the weather and play Super Mario.  He talks like a little adult, and has always been more interested in talking to adults than to children.  It makes me happy when adults stop to listen to my son and actively engage him in conversation.  Derek is known as the weatherman at his school, and a lot of the adults eagerly await his forecast each day!

4.  What's been your deepest sorrow?
My deepest sorrow has been realizing that my son may never be like other “typically developing” kids.  I get sad sometimes when I see other children playing together so naturally.  Just yesterday, I was watching some younger boys kick a soccer ball back and forth at my older son’s baseball game.  It hit me that I have never seen Derek do that.  He has to work really hard to connect with other children.

I also worry that people will judge my son without really getting to know him.  When his hand-flapping is active, I feel stress because I think that others are looking at him and wondering about his strange behavior.  I just want everyone to give him a chance.  Yes, it might take him a little longer to organize his thoughts or formulate his words.  Yes, he may just want to talk about the latest weather forecast or which Super Mario level he is on.  But, if you take the time, you will find that Derek is a sweet, gentle kid who is really smart and has a great sense of humor. 

5.  The thing that surprises you most is…
I am surprised by how many children are being diagnosed with autism!  Just last week, it was reported that 1 in 88 children will be diagnosed with the disorder.  1 in 88!  It frustrates me that we still have no definitive answers as to the cause of autism or the most effective way to treat it.  There are a lot of theories, but no real hard facts.  There is a lot of trial and error when searching for therapies that will help your child.   It is difficult to “treat” something when there is so much you don’t understand. 

6.  What do churches need to know about autism?
Churches need to understand that autism is a real condition that affects families deeply.  Families dealing with autism need support and extra understanding.  I remember many Sunday mornings wishing that someone would volunteer to walk Derek around the church so that I could attend the worship service with my husband.  I would love to see churches develop sensory-friendly activities for children with disabilities.  The church has a real opportunity to make a difference in the lives of autistic individuals. 

I recently heard about a local pastor who hired an aide to work with an autistic child in his congregation during the Sunday school hour.  I was deeply touched by that story.  The life of that boy’s family was changed forever because of the compassion of their pastor.  They could now enjoy an hour “off,” without worrying if their son was disrupting his class.  Well, ok, they probably still worriedJ, but at least someone came along beside them, identified their need, and did what they could to help out.  I think this beautifully demonstrates the Body of Christ working together. 

7.     Where's God in all this?
I would have to say that God is right here.  I have felt his presence in so many ways over the last few years.  He shows up when I am just about out of hope or discouraged about a setback.  God has always provided just what my son needs.  Derek has always had the most incredible people working with him.  These amazing people become like family to us.   
I will close with something my husband said when I asked him this question (I hope that’s allowed!).  Dave said, “God is doing what he always does – using our challenges to make us in to more patient and compassionate people.”  Amen to that. 

*  *  *
... more on autism written by a man who lives it ...




16 comments:

  1. It takes such patience and hard work to parent a special needs child and often times people don't realize all the "behind the scenes" details that have to be worked out to help the child's life and emotions run smoothly. Thanks for giving us a glimpse into your life. I know that God is honored by your dedication and commitment to your son.

    Marilyn

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  2. Beautiful, heartfelt post. Thanks for sharing your heart with all its struggles and joys, Jenn. Thanks Linda for your focus on this subject. God bless all.

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  3. Most of us don't have a clue how a special needs child impacts marriages, families, relationships, finances, and health.

    This is a super-big challenge for churches ... and sadly, many have not begun to step up to the plate on even the basics of showing love and respect for these families. This issue is not going to go away, and will only to continue to morph and demand some compassionate action. We all have a part in shaping a response.

    I so appreciate Brian and Jennifer sharing their stories.

    Thanks for your encouraging words, Marilyn and Sheila!

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  4. Thank you all for your thoughtful and kind comments. I am touched deeply by each one.

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  5. This is such a good post. I've taught students with varying degrees of special needs. Thank you so much for sharing this.

    I'd love for you to link up this post with my http://www.lessonsfromivy.com/2012/04/encouragement-in-trials-with-linky.html

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  6. Calling all special ed teachers! Today's church needs you to bring your skills and your passion and your giftedness through our doors!

    Thanks, KM ...

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  7. What a lovely post with the reality of dealing with autism - the joys and the heartache.

    Thanks so much for linking this up today.

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  8. Jennifer did a beautiful job in filling us in on some things that we really need to get.

    She's a remarkable woman, one I deeply admire.

    Thanks for stopping by, Kate!

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  9. Derek has such a sweet face and beautiful eyes! It's good to let others see what families with autistic children go through on a daily basis. It helps to know what we can do for them.

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  10. His Mama's got that sweet face and beautiful eyes, too! And a heart to match ...

    The same's true for his Dad!

    Thanks for stopping by, Alecia!

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  11. As the mother of an autistic son who turned 21 today, I loved this post! What a sweet look at what it's like to mother these children.

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  12. And a very special birthday to him! I honor you tonight!

    Thank you for sharing that there is a sweet side to this challenge, Terri!

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  13. Thank you for this very encouraging article. So many grandparents are joining in this struggle with their grown kids, helping their grandkids with a variety of special needs issues, including autism. Positive stories like this are such a blessing to help them understand their grandkids a bit better. Thank you.

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  14. Yes, grandparents can be an indispensible lifeline and support for their families, no matter what the challenge ...

    Thanks for this important reminder, Kaye!

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  15. Thought this was good ...

    http://www.huffingtonpost.com/maria-lin/special-needs-parents_b_1338169.html?ref=topbar

    {sent via email}

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  16. '9 Ways You Can Help a Special Needs Parent' is straight-talking, common sense counsel, straight from one mom's heart to each of ours. This is must-reading!

    I so appreciate you pointing us to this important resource, Marilyn!

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Welcome to the table, friend!

This is where we gather and hang out. I'd love for you to pull up a chair and jump right into the conversation. Or simply say 'hello.'

l'll be dropping in to visit you sometime soon ...

Linda

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