Special Needs: Lisa’s Story

As told to CHEWV.

We homeschooled our first two children in Maryland and things were going along well.  But about the time that our second child was entering kindergarten, we became concerned that something wasn’t quite right with our toddler.  At 2 1/2, he wasn’t talking, only grunting and pointing.  He acted like he couldn’t hear us, so we suspected a hearing issue; but there were other oddities as well.  Although we didn’t know what was happening, we were pretty sure he wasn’t developing like the other two had.

A trip to the pediatrician was not helpful.  In fact, we saw several doctors who all told us that nothing was wrong; he was just a late talker. Our gut feeling, however, was that something was wrong.  We prevailed in getting his hearing tested, but because of some behavioral issues, we ended up having to go to Johns Hopkins for the hearing test.  The results came back perfectly normal, and again, we were told that he was just a late talker and not to worry.

I believe it was providential that I heard of Thomas Sowell’s book, Late Talking Children.  I bought and simply devoured it!  It became clear that this book was not describing our son. Late talking children can still follow instructions, but our Josh didn’t even seem to comprehend what we were saying.  About this time we had to move to West Virginia for my husband’s job. Although we didn’t get any better answers from the pediatricians here, my insistence yielded a referral for speech therapy.  It was the speech therapist who first realized that yes, there was a problem.  By this time, that was not surprising to me.

The speech therapist referred us to the Klingberg Center in Morgantown where they do multi-disciplinary child development assessments.   The specialists at the Klingberg Center diagnosed  Josh with autism – with one of the highest scores they had yet seen.

An immediate referral was made to the Birth to Three Program.  Since Josh was nearly three already, those services did not last long.  After Josh turned three, strong pressure began to put him in public school for services. But we did not want to send our children to public school!  I was tired and upset, and neither of our parents was supportive.   One denied the diagnosis entirely and the other told me to put the older children in school so we could attend to the child who needed us more.  While it  had been a long journey just to find out what was wrong,  we soon realized that we had more obstacles ahead.  How were we to get Josh proper treatment when I didn’t have a college degree or any training with special needs?  I felt totally inadequate, yet my husband offered this loving counsel: 

Rob’s first question, “Does God make mistakes?”

I sheepishly gave the obvious answer, “No.”

He continued, “Is there anything wrong with Joshua?”

I answered more quickly, “No!  Joshua is perfect just the way God made him and God has a purpose for him!”

Rob:  “Who gave you the desire to homeschool?”

Me:  “God did.”

Rob: 

“How do you know that God didn’t give you the desire to homeschool our children to prepare you for the work you would need to do with Josh?”

These were words of wisdom that I needed to hear!  And so He did.  None of this was a surprise to God, and He had it well in hand – although we didn’t know how yet.

The doctor at the Klingberg Center was hesitant about homeschooling,  but he was willing to assist and see how it went.  At the time there was a special needs home program through Rutgers University, but the expense was astronomical. I was able to go visit the families involved in that program, and I began reading their recommended material.  I stopped homeschooling the older two for two months while I immersed myself in my own education.  Josh had been diagnosed in November.  By January I had designed my own intervention home program for him. 

A doctorate student agreed to advise me.  She was learning about autism at the same time I was – which was a blessing for us.  As she studied in WVU’s doctoral program, she was willing to share her growing knowledge with me and use our family as a “put it into practice” opportunity.  Josh’s therapy program was 25 hours of one-on-one work every week.  We hired college students, trained them in the program, and then had them “teach” Josh 10 hours per week – which was the most we could afford.  I performed  the remaining 15 hours.  The doctorate student (who would later become a practitioner in the Klingberg Center) advised us as I kept detailed records of what was being done and how Josh responded.

It was intense and constant for well over a year.  But when Josh was about 4 1/2, the original doctor from Klingberg told us that we should keep doing whatever we were doing because Josh was considered “recovered!”  This was music to my ears from the doctor who had been reticent about a home program and fairly insistent that only public school professionals could treat Josh!  A clear diagnosis requires a 25% receptive and expressive language deficit, a 25% social deficit, and certain other associated behaviors.  Josh’s percentage was now well below that on each scale!  This was huge since Josh had had one of the highest autistic scores ever given at the Klingberg Center when he was diagnosed!  And even though persons with autism are never fully healed, we were ready to go into a regular kindergarten homeschool program with only accommodations.  I continued to give Josh special attention —  his homeschooling  was never as easy as “regular homeschooling.”

Was it hard on the older children?  Yes. It was difficult for all of us.  My older son particularly had a hard time when attention was diverted from him. But the older two both became a part of Josh’s therapy out of pure necessity.   If I was schooling one, the other had to interact with Josh.  This proved to be a positive experience for them.  Although my oldest was able to read a book to understand Josh’s needs better, they both had to learn that Josh loved them despite the fact that he wouldn’t hug, touch, or communicate with them.  It took years to adjust,  but it’s been a wonderful learning experience for all of us.  My older children are much more patient and compassionate than they would have been had our family life been easier.

Six years after Josh was born, we welcomed a new baby girl into our family.  It was with mixed feelings that I started noticing similar problems with her. By the time we knew she had Asperger’s,  I had already learned that God would providentially provide just what we needed! 

So what advice would I give parents of special needs children?  Trust your instincts!  When you feel something isn’t quite right, be persistent.  The more important thing, though, is to trust God. We didn’t want to move to WV at first, but looking back, I see that this is where God provided the resources we needed.  God knew!  And He never makes mistakes.  Never.

Side note from Lisa:

While many in homeschooling circles wish to avoid labeling special needs children, it is still extremely important to have them evaluated by professionals to find out where their difficulties lie. As parents, we need to know how to help them learn efficiently. 

This needn’t single out one child if we’re cautious. For instance, as long as we can address their issues, it’s not necessary to call our children autistic, learning impaired, etc…  Their therapy can be called “school.”  Our annual assessment can be the same for all our children so as not to single out our special child.  But having the diagnosis still paves the way for understanding and helping our children to learn. 

For our family, we called Joshua’s therapy “school.”  We never referred to it as therapy.  We also tested all of our children with standardized tests, albeit we arranged one on one testing for Joshua. But since we needed to turn in a portfolio review for Joshua, we did portfolio reviews for the other children also.  As much as we could, we treated our children equally. Nevertheless, getting Josh diagnosed was essential for his educational success!

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