My husband and I have been married almost 14 years now.  God has blessed us with two wonderful boys.  Our boys are ages ten and eleven. We home school our children.   Our youngest son has struggled with a severe speech delay his whole life.   We have had some good speech therapist as well as a few bad.  

Our son’s speech delay matters!

by Raina Robinson

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When Caleb turned two years old, I began to worry about his speech.   Caleb’s older brother David talked very early.  The pediatrician told us not to compare the boys.  We were told that children do different things at different ages.  Caleb seemed to be on track developmentally.  So I put it out of my mind and focused on daily challenges. 

On Caleb’s third birthday we asked our pediatrician about Caleb’s speech.  We were sent to an audiologist for a hearing test.  It showed that Caleb had mild hearing loss.  We were told that Caleb had adequate hearing for speech.  Again we were told that Caleb was normal and everything was fine.  Caleb had an older brother that did all of his talking for him and for us not to worry.  David would talk for Caleb.  David was born to be an older brother.  Caleb would just point and David would run get the item Caleb wanted and give it to him.  All Caleb had to do was point and cry and David would take care of him.

A month after Caleb’s third birthday we moved from Texas to the state of Washington.   I dreaded the road trip from Texas to Washington State with a three year old and a four year old.  In preparation for the road trip we bought a music cd with songs geared for children.  After being in the truck for 5 days Caleb started singing along with the songs.  It gave me some comfort seeing that Caleb was starting to sing a few words.  However, I couldn’t stop worrying about Caleb’s speech. 

When we arrived in Washington we found a pediatrician who recommended we get Caleb evaluated by a speech therapist.   This would prove to be a devastating experience for our family.   After a 30 minute evaluation we were told that Caleb was mentally retarded and would never learn to talk.  We were also told that Caleb’s future was non existent as he would end up living in a group home.  This broke my heart.  I did not believe it.  Something inside of me would not allow me to believe it.  We saw this speech therapist for 3 months.  These sessions would be very depressing.  The speech therapist was very negative.  Each session would be spent with the speech therapist telling me everything that Caleb could not do.  It was very frustrating.  One day I told the speech therapist that I was fully aware of what Caleb could not do and that we were paying her to show us what she could teach him.   Our family came to the conclusion that she could not help us. 

We were shocked that a thirty minute evaluation could permanently label a child.  Thirty minutes isn’t enough time to figure out what a toddler wants for breakfast let alone his adult life.   We observed Caleb’s thirty minute speech evaluation.  We had a lot of doubt about the evaluation process.   How could anybody properly evaluate anybody’s child in a thirty minute session?  Especially since these evaluations will go on their medical records.  

Caleb was uncooperative during the initial speech evaluation.  We felt the evaluation was outdated and left no room for adjustments.  In other words there was only one correct answer and only one correct answer.

For instance the speech therapist would show pictures to Caleb and ask him to tell them what they were.  I remember the speech therapist showing Caleb a picture of a bald eagle.  She asked Caleb what the picture looked like to him.  He said “BRR” He was telling her bird.  She wrote in her report that Caleb didn’t know what a bald eagle was.  She said that bird was the wrong answer.  She then went on to tell me how sad it is that Caleb didn’t have the vocabulary to identify a bald eagle.

During that time Caleb woke us up in the middle of the night crying.  He seemed very sick.  His eyes rolled in the back of his head and he started shaking.  At first we thought he was dying.  It looked like he couldn’t breathe.  His lips turned blue and he was making gasping sounds.  When he started foaming at the mouth and we realized he was having a seizure.  My husband called 911 and paramedics arrived within five minutes.  They allowed me to ride in the ambulance with Caleb to the hospital.  We were told that Caleb had a fever induced seizure.  This only caused me to have more sleepless nights worrying about Caleb’s health. 

In the meantime we fired Caleb’s speech therapist.  We needed somebody that would fight for Caleb and try to teach him how to talk.  We were getting very frustrated dealing with our health insurance over speech therapy.  We discovered that most insurance won’t pay for speech therapy.  Apparently many insurance companies do not see the need for speech therapy.  We were lucky that our insurance would pay for a determined amount of speech therapy sessions each year.   These speech therapy sessions are at least 100$ for a 30 minute session.  So the average person can not afford it without help from the insurance company.  

During this time we were wondering about how to find a speech therapist that would help Caleb. Caleb had another seizure.  This time there was no fever.  We were getting ready for church.  Caleb was running all over the house playing.  Next thing I remember was hearing a loud thump and when I turned around Caleb was on the floor having a seizure.  When we went to the ER we were told that Caleb once again had a fever induced seizure.  I took Caleb’s temperature during his seizure and it was normal.  So I really didn’t think it was a fever induced seizure.  Two weeks later Caleb had another seizure.  Again we were told that he had a fever induced seizure.  It was hard to believe since he had no fever before, during, or after his seizure.  We were told it was time to see a pediatric neurologist.  We were very frustrated to learn there was a 6 month wait to get into see a pediatric neurologist.

At this point we didn’t know what to think.  We were very worried about Caleb’s health.  We were afraid to try another speech therapist.  Our first experience was negative.  We did not want our son slapped with a “label” and thrown in special education.  So we ordered products over the internet that claimed to help kids with speech delays.  We found a few things that helped.  Caleb was approaching his fourth birthday.  I realized that he needed help that I could not give him.  We prayed about it and decided it was time to find a speech therapist.

After a lot of prayer we found a speech therapist on the internet.  After an evaluation by Caleb’s new speech therapist we were told that Caleb was a very bright child and with a lot of work would overcome this speech delay.  This evaluation took three 45 minute sessions.   I cried as the speech therapist talked to my husband and me.   This speech therapist was a very kind person that worked very hard to help Caleb. 

We learned to focus on small improvements and not to worry about what Caleb was not able to do.  We were told to focus on each new thing that Caleb could do whether it was big or small.  Speech therapy is a very long and painful journey.  We learned that Caleb had a gag disorder.  When he put his tongue in certain positions to make certain sounds it would make him want to throw up.  So we discovered that he wasn’t even trying to make those sounds. 

So occupational therapy was begun with Caleb.  This was also not easy.  He would cry because it would bring him to the point where he would gag and occasionally throw up.  Caleb learned that he was leaving off the beginning sounds as well as the ending sounds.  With this realization he began to make a lot of progress.  After months of intense speech therapy we were finally getting somewhere.  It was a very long and painful process.  Some days it seemed as if we were making progress and other days it was as if Caleb was right back at square one.

We decided to home school Caleb along with his older brother David.  The public school was more interested in placing a retarded label on Caleb and putting him in special ed.  This was not acceptable to me.  I wanted somebody that would believe in Caleb and work hard to help him achieve his goals.  Within a short time of homeschooling, Caleb was reading, writing, and was very good at math.  How could a child that learns so quickly be retarded?  It made no sense to me.  Public school teachers want children that are easy and require no extra work on their part.  Caleb did require extra help.  So all the public school teacher is trained to do is put the child in special ed and give them a label.  Why would I want to put my child into an environment where people had already given up on him?  Caleb is my child and nobody but God could love him more that his mother and father.

About a month after Caleb turned 5 years old he had another seizure.  The pediatric neurologist told us that Caleb was healthy and would outgrow these seizures.  I am thankful to say that Caleb is now 9 years old and hasn’t had any more seizures.   We will never forget them.

We were very sad to learn that Caleb’s speech therapist was getting a new job.  We had learned so much from her.  Honestly we were afraid that we would not be able to find another speech therapist that would work with Caleb.   When the new speech therapist met with us she evaluated Caleb.  We were told that Caleb was five and a half years old and communicated on an 18 month old level.  The new speech therapist again made the recommendation to us to put Caleb in public school special ed. 

We disagreed with this evaluation.  During the evaluation she showed Caleb a picture of a bird, a tree, and an airplane.  She then asked Caleb to tell her which two pictures went best together.  Caleb picked up the bird and the tree.  He then told her that birds build nests in the trees.  The therapist then turned to me and said that was the wrong answer.  She wanted him to say bird and airplane because they fly.  I explained to her that we have a bird that built a nest in the tree outside our kitchen window.  Once again there is only one correct answer to these subjective evaluations.  So we left that speech therapist and never went back.

It is wrong to give a child an evaluation and place a label on them.  Children all develop at different ages.  We have encountered a lot of criticism for our decision to not put our kids in a public school.  Our children matter to us.  We only have them for a short time.  And we don’t have much time to give them what they need to be productive members of society.  We felt that placing our children in public school would give them a bad start in life.  We want our children to believe that with help from God they will be able to achieve their life goals.  Placing Caleb in a public school where he is singled out as different in a bad way is not my idea of giving him love and encouragement.  The life long stigma that special ed gives a child with average intelligence is harmful. 

We have learned so much watching our son struggle with this speech delay.  Our son has taught us about patience and perseverance.  We our amazed at the strength our son has shown us as he has overcome most of his speech delay.  Could you imagine having a normal IQ but you were unable to communicate verbally with people.   It may seem like a minor problem to most people.  But it is devastating to the mother who wants her son to communicate with her.  When my son was three how much I wished he could tell me what he wanted for lunch.  But all that came out was “ nuuum niiih wiiish.”  It was like a foreign language.

If you suspect your child has a speech delay problem, you may be worried about what you should do. We have experienced this same anxiety and weren't sure how best to handle it. The following steps are the route that helped us get to a point of what was right in our own path to helping our child's speech delay.

Make an appointment with your pediatrician to discus your concerns about your child's possible speech delay. The pediatrician will talk to you about your concerns and recommend speech therapy if a problem is suspected. Sometimes your health insurance will require a referral from your pediatrician. The main thing is to get your child properly evaluated.

Make sure you find a speech therapist that works well with your child. It will be unproductive if your child doesn't work well with the speech therapist. It is important that you sit in with your child during the initial speech evaluation. You can see the evaluation process and determine for yourself if it is an accurate evaluation of your child. Remember that you know your child better than anybody. Sometimes these evaluations are not accurate due to a variety of reasons. For example you child might not have had a nap and may not be interested in the speech evaluation process. So it is a good idea to make an appointment time that works well for your child. Smaller children might have a more productive speech session in the morning.

Make sure that you have speech activities to work with your child at home on a daily basis. Music is a wonderful activity that reaches children in a special way. Get a music cd with kid’s songs and play it at night when they are going to sleep and in the car. Some kids will be able to sing a long while others may just be able to clap their hands or even hum along. Make daily activities a speech lesson. Talk to your child and explain to them daily activities like going to the store, bath time, cooking lunch, etc. Also it is a good idea to work with your child on their vocabulary. When you are at the dinner table you could hold up a fork and tell them what it is and what you do with it. It may seem silly but remember your child may not know the proper word for every item. It is a good idea to ask your speech therapist for homework. Your speech therapist will be able to tell you things you could be working on through out the week.

It can be very scary to have a child with a speech delay and make the choice to home school. Many families have faced the same challenge and been successful in working through their child’s speech delay. This is the process that we have gone through and would recommend to you.

Train up a child in the way he should go: and when he is old, he will not depart from it.  Proverbs 22:6

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