Is it Autism?

May 4, 2012 By

“She does not like to be held or rocked at all.  She won’t look at what I am pointing at, and never points at things herself.  The softest touch sends her wailing, but being bitten by ants at the playground did not cause a stir.  She still is not talking, but all my friends have had late talkers.  She seems to look everywhere but in my eyes. So many things don’t seem right. Could this be autism?”

Autism. Just the sound of the word makes the strongest of moms weak in the knees.

So what is autism? 

According to the Mayo Clinic and my own experience with my child with autistic like tendencies:

  • Autism is a disorder of brain development that causes developmental problems and appears in early childhood.
  • Each child with autism is unique and affected differently than others, but all have problems with communication and interacting with others.

There is no cure for autism.

What are some symptoms?

  • The symptoms usually show up between 2 and 3 years.
  • The child will fail to respond to his/her name.  “My daughter at 8 years old will still not respond when I call her name.  This makes it very difficult to find her inside or out.   When I call out to her, I have to ask her, “Say Something!” And if I’m lucky, I will hear a faint noise from her and be able to then find her.”
  • Poor eye contact.
  • Does not like to be held or cuddled. “This is a real area of guilt as a mom. I tried for years to read to her and rock her like my other children. She would scream and claw her way out of my lap. It was very hard to bond and feel connected.”
  • Talking starts later than age two or loses ability to say previously acquired words.  “My daughter is 8, and praise God, she just started putting 5 words together! For the first time she is able to tell me if she is not feeling well, what she wants to eat, and small bits about her day at school!”
  • Can’t start or keep conversation going.
  • Likes repetitive movements (hand-flapping, rocking back and forth)  ”Our daughter loves to hold one leg, rock back and forth with humming/mumbling the same sounds over and over and over and over:)”
  • Children with autism look “normal”.  ”Going out in public can be very hard. I cringe every time someone comes up and asks my daughter her age. When I respond for my child, the stranger gives me a queer look, as if to say, “Why don’t you let her answer the question?” If only it were that easy.”

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When should I see my doctor?

  •  12 months- your child isn’t babbling or cooing, no pointing or waving gestures
  • 16 months- not saying single words
  • 24 months-not able to say two-word phrases
  • Any age-the loss of acquired language or social skills

Source: Mayo Clinic Staff, 2010, Autism. Retrieved April 16, 2012, from http://www.mayoclinic.com/health/autism, para. 1-11)

I think my child may have autism, now what?

  • Your doctor will evaluate your child and refer you to a specialist.
  • If your doctor isn’t listening to your concerns, contact your local school for an evaluation.

And finally, here are some excellent resources to help you or a friend today!

Finally, my prayer for you is that the Lord will comfort you.  Isaiah 44:2, “Thus says the LORD who made you, and formed you from the womb who will help you, do not fear.” The LORD knew what he was doing when he made our children and will help us each step along the way! How has the Lord helped you or a friend on this journey?      ❥Tara Dovenbarger


 

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Abide in Me

April 16, 2012 By

Close up of baby's foot in mother's handWhen I am asked, “How many children do you have?” I don’t know how to respond. “Three,” I answer, while I finish the sentence in my head, “…here with me and one in Heaven.” I will never forget my daughter, Rachel Faith, even if the only life she experienced was in the womb. She is always with me. As beautiful as she was at birth and at death, those images are not what flutter through my mind. I imagine her dancing with her sister. I twirl her dark curls. I embrace her, though she’s not physically here. Rachel died at birth and age stopped counting, but to me she’s almost 10.

Rachel lived in me. Her heart beat loud and strong while she stayed with me. But she left my body, and our hearts no longer beat in harmony. She was here. Then she was gone. About a week before Rachel Faith was born, I felt a sharp pain on my lower left side. I feared its significance; I knew her birth was near. By this time, the trisomy 18 had been confirmed, and the grim outlook bore gravely down upon me. I fell to my knees and wept. Through tears, I whispered to Rachel, though she could not hear or understand, “Stay with me! Don’t come out! Don’t go!” As long as she was in me, her heart beat. In me, she was alive and strong, vital. Apart from me, her imperfect body could do nothing.

Jesus says in John 15:5 (NKJV), “I am the vine, you are the branches. He who abides in Me, and I in him, bears much fruit; for without Me you can do nothing.” The Greek meno (abide) means to stay in a given place, to continue, endure, or remain. Jesus tells us to stay in Him. In Him, we are alive and strong, vital. In Him, we bear much fruit. Apart from Him, we wither. Apart from Him, we perish. Now, my Rachel could not physically remain in me forever. Her departure from this world was an act of the Father pruning my husband’s and my branches. We faithfully allowed God to work His will in our lives out of obedience to Him. “By this My Father [was] glorified, that you bear much fruit” (John 15:8 NKJV).

Losing Rachel evoked desperate emotions. My thoughts echoed Job’s, “May the day of my birth perish…That day – may it turn to darkness…May darkness and deep shadow claim it once more; may a cloud settle over it; may blackness overwhelm its light. That night – may thick darkness seize it; may it not be included among the days of the year nor be entered in any of the months…for it did not shut the doors of the womb on me to hide trouble from my eyes” (Job 3:3-10 NIV). The pain was so intense; I felt it would be better never to have existed at all than to experience such heartbreak.

Though I lingered awhile in the darkness, I could not wallow forever in my misery. I emerged from the pit despair plunged me into, “And I declared that the dead, who had already died, are happier than the living, who are still alive. But better than both is he who has not yet been, who has not seen the evil that is done under the sun.” (Ecclesiastes 4:2-3, emphasis mine.) Rachel existed, but she did not live to “see the evil that is done under the sun.” I know she is truly happy, for to be absent from the body is to be present with the Lord.

From time to time, I gaze my affection upon memories of Rachel. She was here so briefly, they are but few, so I hide those treasured trinkets away in my heart. Often in regard to writing, I tell people I know it’s a God thing when my writing goes a completely different direction than the one I had planned. The same is true in life. I had plans for Rachel. Big ones! But what God had planned for her was so much better. Better than both is he who has not yet been! All Rachel has ever known is Glory. I rejoice in God’s plan. Sure, I cry tears of sorrow from time to time, but I long for time without end when I join her in God’s presence and see what she has always seen.

Jesus wants us to produce fruit for Him. The type of fruit we produce by remaining in God’s love is what results from our example of faith, things such as reaching the lost, drawing His children closer to Him, and exemplifying His gentle mercies. We must continue in Him. We must remain attached to the vine in order to bear fruit. He tells us this 10 times from verses 4-10 of John 15!

If I abide in Christ, and He in me, I am vibrant. As Rachel was alive in me, I am alive in Jesus! Remain in Jesus, dear sisters. “These things I have spoken to you, that My joy may remain in you, and that your joy may be full” (John 15:11 NKJV).

By Jodi Whisenhunt

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Help!

April 2, 2012 By

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Do you have a nagging feeling that your child’s development is not quite right?  Does your doctor see areas of concern?  You may know you want help, but have no idea where to turn.  Today my goal is to give you some information to help you get started!

The very first place to begin is with Child Find, www.childfindidea.org.  This website will help you obtain the contact information for your specific state. By law, each state is required to locate and evaluate every child between birth and age 21 who may need special education or early intervention services.  This evaluation will let you know which services your child qualifies for, and help you set up any appointments you may need.

After meeting with Child Find, you will discover how many unique services there are available. All of these professionals have the goal of helping your child reach their highest potential. I will try and give you a small snap-shot of all the wonderful services at your fingertips:

  • Physical Therapy✄  This wonderful person helps your child with increasing  strength and stretching tight muscles.  The therapist may come to your home, work in a hospital or clinic, or be part of the school system.
  • Occupational Therapy✄  I will always remember my daughter’s first OT therapist! She came to our home in Arizona, and helped our daughter for hours to learn to walk. Their job is focused on visual, fine motor and self help skills.
  • Speech Therapy✄  For the youngest kids, this therapist works with the muscles of the mouth by using fun exercises like blowing bubbles or sucking through straws. In the later years the therapist helps the child form sounds, or in some cases helps train the child and family with a special computer which allows the non-verbal child communicate.

Your child may need all of these services, or just one depending on their specific needs.

Also, if you home school your children, you have the same rights and services as traditionally schooled children.

God knows your unique situation.  There are many loving professionals who will help your child become all she can be!

“The Lord my God holds my right hand; He is the Lord, Who says to me, Fear not; I will Help You!” Isaiah 41:13

❁What services have helped your child the most?  How did you get started on the road of special education?  Was it hard to reach out and ask for help?We would love to hear from you! ❁

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Welcome to Holland, by Emily Perl Kingsley

March 9, 2012 By

❀❀ Here is a wonderful essay by Emily Perl Kingsley.  She has given us all a wonderful snap-shot of the experience of having a child born with a disability, and allows us to feel some of the emotions that go along with it. ❀❀

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When you’re going to have a baby, it’s like planning a fabulous vacation trip-to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum. The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It is all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?”,  you say.  ”What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there has been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So, you must go out and buy new guide books.  And you must learn a whole new language.  You will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But, after you’ve been there for  awhile and you catch your breath, you look around…and you begin to notice that Holland has windmills…and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they have there.  And for the rest of your life, you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned.”

And the pain of that will never, ever, ever go away…because the loss of that dream is a very, very significant loss.

But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things….about Holland.

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❀❀Have you found yourself in a completely different place than you planned?  Can you find someone today to encourage that has had a similar experience? How can I encourage you? ❀❀

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Growing Up Different

February 21, 2012 By

     Another crazy afternoon, a day in the life of me. Except this time, we had just picked up my oldest from school and she is still struggling to keep herself together. I juggle her assignments, Elijah’s off the wall energy and Tori’s victorious antics. We settle in for the evening, supper, showers, stories, and bedtime. After I get the little ones to bed, I hustle Chy into the shower.

She takes longer than usual, forty five minutes later, she is out, dripping wet and her eyes hold a brokenness in them. She asks me quietly if I would straighten her mound of golden brown hair.
     

“Sure,” I say as I begin the tedious process of de-tangling and blow-drying her Shirley Temple curls. She’s looking at herself in the mirror but something is different, I don’t like the way she is looking at herself. She doesn’t say it, so I say it for her,

“You don’t think you’re good enough, do you?” Her big brown eyes begin to mist, the pressure of being in sixth grade and trying to compute the world the way everyone else does, is just too much. For those of you who have been following this blog, you know that Cheyenne has struggled in school since the beginning.

In first grade, she floundered because she couldn’t see the words like everyone else. She had to learn a completely new way to read by memorizing the look of a word.

In second grade, we found out, she was nearly blind on one eye. It required sporting an eye patch all day, everyday. In third, she was the little girl that the girls left out in their games, making themselves superior in her eyes. In fourth, we realized she couldn’t focus and required different learning strategies with the diagnosis of Inattentive A.D.D. and recently the missing piece of the puzzle of Cheyenne was Aspergers.

Middle school holds all new challenges which Cheyenne has to fight through to make sense of the world. She wants to fit in, to look like everyone else, to be able to laugh at jokes, and be silly like the rest of her peers. But Cheyenne doesn’t get jokes, she has curly hair, glasses, and is taller than her teacher. In sixth grade, she is realizing her world is not like everyone else’s, she has to fight the way her mind interprets all of its sensory mis-communications (Imagine trying to have a conversation while standing in the middle of a casino with every machine hitting jackpot at once and confetti blowing everywhere). Everything from smells wafting in the air, to the the way her clothing feels on her body, she has to learn to tune out in order to process what is happening within the bounds of the socialization happening around her.

As I straighten her hair, I begin to tell her how perfect she is.

“God created you for something special, I don’t know what it is yet, Chy, but you have gifts, abilities, and talent for the purpose God planned for you. Everything from your hair, to your heart has been made absolutely perfect. You’re stunning, you’re powerful because you’re a child of God.”

As we stand there in the silence, the song Mean by Taylor Swift plays over the radio and we get silly. Grabbing our hairbrushes, singing along together,   “You, with your words like knives, swords and weapons that you use against me. You–You’ve knocked me off my feet again, got me feeling like a nothing…Someday, I’ll be living in a big ol’ city and all you’re ever gonna be is mean…” As we dance around our bathroom, somewhere in the middle of it, I get what she’s going through, someday and soon I hope, she will be strengthened enough in who she is and not what everyone makes her out to be.

After hugging her skinny, five foot seven inch frame, I send her off to bed, feeling like I have no clue what I’m doing in this stage of motherhood but being real with her has somehow helped.

How do I encourage her when I don’t understand how she sees her world? How can I cheer her on if she cannot believe in herself? All I can do is love her the best I can and continue praying that God reveals to Cheyenne the beauty and a strength that she holds all on her own.

By Heather Riggleman

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Uninvited Diagnosis

February 17, 2012 By

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She was tiny, frail and unable to meet any of her developmental milestones.  I knew her biological mom had used every drug imaginable during her pregnancy.  Nevertheless, the neurologist’s diagnosis cut through me.  Our adopted daughter would struggle through life with brain damage.

Two years later, another uninvited diagnosis forced its way into my world. It came from a high-risk pregnancy doctor that rushed into the room after a longer than normal ultrasound. He dug the ultrasound wand into my swollen belly while still chewing his half eaten lunch, “Absent bladder…hernia…heart on the wrong side.  Most likely Trisomy 18. The pregnancy needs to be terminated.”

One month later, while carrying my child still safely in my womb, I found myself rushing my six year old to the hospital. As I bent over her, spilling tears on her face, the next diagnosis came from the attending doctor. Our daughter would live the rest of her life struggling with the hardships of Juvenile Diabetes.

I don’t know about you, but when I was a child I never grew up dreaming about having children with life long special needs. Now, as a grown woman, I am caring for a developmentally disabled child, have a broken heart from a child that has passed away, and care for a child with medical issues. What do we do when life places us in such a foreign reality?

First, we need to know it is fine to cry. The Psalms give us excellent examples of how to grieve well. They start with crying out to God, asking why, and give us the freedom to have real, raw emotion. Psalm 102 gives us a great snapshot of this. We should be able to go to God with our sorrow open and honestly.  Just as importantly, we should always fill our cries with prayers of thanksgiving and remembering who God is. Jonah’s Prayer in Jonah chapter 2 is another excellent passage to meditate on during our grieving, and certainly helped me through the extra hard days.

The second thing that has enabled me to press on is to know who Christ is. When my world was so rapidly unraveling, I had to find solid footing. The ONLY place to find tangible help is in the word of God. In His word, I was able to find peace and know that He is in complete control.

Lastly, God has given me a Christ-like friend whose children also have unique needs. We are able to understand each other and encourage each other on a daily basis. A friend who is in a similar circumstance is an enormous blessing! We are able to laugh together, cry together and be honest with our feelings.

Have you found yourself parenting in a hard situation? Press on, dear mom!! Our blog is here for you! Our desire is to encourage you and let you know you are not on this road alone, no matter what the uninvited diagnosis may be.

By Tara Dovenbarger

 

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