Our Son's ADD/H and Autism

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Our Son's ADD/H and Autism
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January 2008

I should start back in the year 2001. After a series of EKG’s it was found that A.J. had a minor, non-threatening heart conduction problem. His Dad and I decided to take him off Ritalin. He was 12 years old. Kaiser had done an EKG before he was put on Imipramine and the test was normal.

The next 3 ½ years were very difficult for our family. A.J. was full of energy and he became a modern day “teenager” with all the back talk and attitude. We made the decision that his Dad would handle all the parenting and school work and discipline. This was tricky of course because Dad was at work all day, but we muddled through it and by the time A.J. was 16 he was very reasonable and a nice young man to have around. He can be moody and we try to be watchful for signs of teen depression.

During the teen years we began to really see the extent of his learning disabilities. A.J. went from wanting to please us to apathy about school, chores and taking care of himself. We continued using the chore charts and giving him rewards for completing each days assigned work. What is a teen boy interested in? Computers and gaming systems! He was given a set amount of time each day to play after his chore chart was competed (school work was included on the chart). If he was pleasant and had a good attitude he got extra time. If A.J. did above the assigned work he got even more time. He is now 18 years old, 6ft 2 and 140. He is in the 11th grade (he has been held back twice). The motivation now is cold hard cash. We are not able to pay him much, but what he does earn he tithes, saves and has some spending money.

A.J.’s current school work is Bible and Hymns, Mathematics, English, Reading, Science, Geography, History and Latin and in the last month Violin lessons. We have never done a 9 month school year and when my oldest daughter began high school we continued our “year around” schedule. This give my children 12 months to do two semester of work. The above subjects are not taught every day, some like Geography are taught for four weeks and then dropped for a few weeks. Some of A.J.'s subjects are modified and/or are remedial lessons as needed.

We have been aware for many years that A.J. might have Autism or at least Asperger syndrome. A.J.’s pediatrician and I had talked about having A.J. diagnosed two times in 1997. I had read several books about Autism in the early 1990’s. These books gave me ideas to add to what our family already did with A.J. on a daily basis. I told his doctor I would not change how we do things if we had a diagnosis. I knew of nothing in our cities that would be of help to us other than being told to enroll A.J. in school so he could be mainstreamed. We knew of people who were very unhappy with the bullying and unreasonable school demands while their child’s IEP was not being followed and they were constantly fighting with teachers and district officials. A.J. while we lived in the bay area, was from a young age in homeschool co-ops and weekly get togethers for boys his age and weekly park days for students of all ages. There was also yearly Valentine and Christmas parties for the children to enjoy. When needed, our family would leave family and school events as soon as he showed signs of being stressed. When possible we would visit field trip destination before the field trip so that A.J. could get the “lay of the land” and enjoy the actual field trip much more.

For better or worse we decided against pursuing specialists.

A.J. has never outgrown his dislike for crowds, theaters and major changes in his routine. He does not have melt downs anymore when he is over stimulated or stressed. We and he have learned how to cope with life.

This past spring (2007)

A.J. woke-up and would not get out of bed. This past year A.J. had become very moody and not wanting to get out of bed until 11:00 am. Once he was up and moving he was fine and as the day wore on he was his happy self. We instituted, after a family meeting with Dad, a rule that A.J. would be left alone by everyone for 60 minutes (using the kitchen timer) once he woke-up and it was not going to be at 11:00 am either. A.J. was told that while we would try to make this happen, sometimes in life we would have to rush out the door for an event or an appointment and that was just the way it was.

A.J.’s 60 minutes were up and he would not talk to me, his sisters or his Dad on the phone at work. His Dad told me to tell him I would take him to McDonald’s if he would get up. After some time he got up and got ready and we went to the drive through. We came home and got started on the day’s work and I did not mention it again until that evening. I asked A.J. what happened that morning that he would not even speak to us. A.J. told me he woke up with such terrible chest pain and he just wanted to be left alone. When A.J. is scared or hurt he always shuts down. I asked him if he was still in pain, did it come and go? He was still in pain, just not as bad as that morning. I had a sister go get the thermometer , another sister get the phone, and I looked for Kaiser’s phone number for the advice line. I explained to the advice nurse the whole story and she talked to A.J. too. We decided that he would be seen first thing tomorrow unless he got worse in anyway – more pain, breathing problems, he did not have a fever currently but if he began one to take him to the ER.

Next day tons of blood work and chest x-rays later – Walking Pneumonia, he had had a slight cold a few weeks earlier.

A.J. has not been ill since we moved to the Central Valley, and had never seen his doctor. His doctor is a Dad of teens and from Iowa. After telling what A.J. had and how he wanted to treat him, he asked me if I had ever heard of Marfan Syndrome? I had not. His doctor told me why he thought A.J. might have it, why it was very dangerous to the heart and other organs and that we should really rule it out.

Many questionnaires and specialists and blood tests and echo cardiograms and EKG’s later, nope A.J. does not have it. But his learning disabilities, ADD/H and possible Autism came up constantly. Every single one of these doctors were excellent. As they asked me questions about medicines and treatments for Autism, I explained what we did at home and he had never seen anyone for it. I realized there was many more things available in 2007 than there was in the late 1990’s. I knew little about the things they were asking me.

At my request I wanted to find out if A.J. could use a new medicine for Attention Deficit Disorder and pursue a diagnosis of Autism and the spectrum. After seeing two more cardiologists at Kaiser, it was decided A.J.’s Bundle Branch Block (right, incomplete) was not dangerous and he could start on Concerta. I make it sound easy. A.J. had to also go through a complete assessment for Attention Deficit Disorder because his original diagnosis was so old. This included visits with the Psychiatry Department.

A.J. has been on Concerta for a month. He is on the lowest dose available. We have seen very good things right away. A.J. does not need his 60 min leave me alone time. His school work has improved as well as his memory. He is a little more “into” life. A.J. normally takes a few hours to perk up and start joking around, now he is happy and “awake’ much quicker.

The rules concerning the dispensing of these medication have increased which is good. A.J. has to see his doctor every 25-30 days.

We have a referral to the Autism Spectrum Disorder clinic and are just waiting for the call. I already submitted all the questionnaires. We will also be attending a class soon that is held for parents whose children have been newly diagnosed with Autism Spectrum Disorder/PPD even though he is not yet been seen by the clinic. I am looking forward to this class and learning all the newest information, treatments and techniques. I am very pleased that this disorder is getting so much more attention and parents are given more help than in the past.

I wrote about my other children in the article below. Alisha is now 20. She graduated high school at home. She is studying to be a Japanese translator at the local college and works part time. She is still living at home. Amanda is now 16 and also began taking Violin lessons. AnaMarie is 12 and our youngest - Amber is 9. They are home schooled also.

Written in 1997

My son A.J. has severe Attention Deficit Disorder and is mildly Hyperactive. He has never been in the public school system. We over hauled his diet when he was 18 mo old and I stopped nursing him at about that time. He has not been exposed to Power Rangers and the like. He is bright, wants very much to please us and likes to pray at dinner time. Now 8, A.J. enjoys his school work but is having quiet a bit of trouble retaining what he learns. We spank him for disobedience and destruction of things. He is not disrespectful and willing enjoys hug and kisses but does not give them. We have 4 children, he is the second born.

When he was 6 mo. old he crawled over to the T.V. on the stand, pulled himself up and pushed the T.V. off. When he learned to walk he took a few steps and has been running every since. When he was 20 mo. he climbed out of his crib, but fell and broke his arm. We had another crib we put him in that had a lower mattress. He climbed out of it, fell and re-broke his arm in the cast. We ended up putting a mattress and blankets on the floor and putting a port -a-crib over him like a cage. He would just lift it up and push it off to get out. If we could get him to stop moving for two minutes he would fall asleep. When he would sleep he was in constant motion. We felt awful about the cage, but he would hurt himself if we left him to roam his room. He would wake-up at 5:00a , take a 20 minute nap and finally fall asleep at 11:00 p. When he was about 26 mo. he got out of his crib on the floor, he took a picture off the wall, broke the glass and cut his hands up a bit. Thank the Lord it was not serious. A few months later we bought him a cheaper version of the picture which after tapping on it decided was not glass. He got out of his crib on the floor and took down the picture once more, broke the glass and cut himself again. Our pediatrician knew about every single thing.

As any parent of a ADD/H child will tell you, they move very fast, are very quiet when getting into mischief and need constant supervision. He potty trained at two on his own much to our amazement. I did not plan on trying till he was 3. He could not talk until he was over two. A.J. was about 13 months when we began to teach him to use simple sign language.

When A. J. was about 28 mo. old his doctor started the process to have him assessed for ADD/H. What really pushed it to happen was the doctor sent him to a speech therapist. The poor speech therapist asked what was being done to help him after he crawled across the top of her book shelves (among other things). I told her his doctor said he will out grow his " busyness ". The speech therapist said his brain was either going so fast he could not learn to talk or he knew how, but was distracted by every little thing and would forget what he was going to say. She put in her report that until A.J.'s ADD/H was addressed he could not be helped with his speech. In a matter of weeks he was seen by a psychiatrist and diagnosed (dx). He was put on Imipramine. It did wonders for his Attention, he began to talk and sing and he was a different child in that regard. He had so much he wanted to tell us. He has never stopped talking since. We don't complain because we remember when he could not talk. It did not help at all with his Hyperactivity. We later switched to Dexedrine to help with the Hyperactivity. It was not a good medication at all for him. He cried all the time and slept when he was not crying. We went for another year with no medication, but did try some herbal remedies with no success. He had stitches twice and then decided his goal in life was to catch a car. That's what he would talk about. It scared me to death. I took him back to the doctor and said there must be something we can do. I showed her the behavior charts we used and the progress he had made, but he has no sense of danger, no impulse control, no sense of if I do this, this over here will happen if I do it again the same thing happens again.

At 4 he was put on Ritalin. 5 mg. three times a day. We are very happy with the results. It seems to slow down his mind enough that he can listen, think things through (with help) and be taught proper behavior. He is still Hyperactive. We have been asked to take him out of his Sunday school class because he is disruptive. We put him back in the pre-K class were it is mostly free play, but we have had trouble in there to because he opens every thing and makes messes when he is exploring. We now are attending a small church where he joyfully attends Sunday school class. At 8 he is on 10mg 3 times a day

Most of these are not mine, but they have worked for us and do not go against God's word. Thank You to the Clarkson's for permission to use excerpts from there book THE WHOLE HEARTED CHILD.

I believe that there is a wide range of severity of ADD/H. Border line, mild, severe, ect. I read that different children have different areas of the brain involved, the medications now being used work on very different parts of the brain. You have to sometimes try several to find the one for your child.

Some children will out grow it by the time they are adults. I have read that they now know that up 40% do not out grow it. I am an adult with it. Stress and illness make it much worse, but I do not take medication. I feel I can cope most of the time with the God's help and my husbands support. A.J. probably inherited it from me. My oldest, Alisha is 10 and has mild Attention Deficit and Cerebal Palsy (she was born prematurely). She was Hyperactive as a child, but has out grown it. Because we think it is mild, we have never had her seen for it. We teach her how to cope. My 3rd child is Hyperactive, but I feel she will out grow it. Amanda is 6 and I have see great improvements in her activity level. We went through testing in 1996. Amanda was dx with Dyspraxia. She has severe vaccine reactions as a baby and was hospitalized. Dyspraxia occurs after a stroke in adults and has only been dx in children the last few years. We think the vaccines caused her to have some sort of stroke which caused her Dyspraxia. We have a another little girl. AnaMarie is 2 /12. These 3 children were vaccinated and our last child was not. She is "normal" and in very good health. Many parent are beginning to wonder if ADD/H is caused by vaccines.

I do believe that is over diagnosed. All children seem to have boundless energy. Many children are forgetful and don't seem to listen to what you are saying. Self control for a young child is hard to master. But there are children like my son who from the beginning are far beyond the other children in these and other areas to one degree or another.

Many children who may have it mildly are being put on medication unnecessarily to help teachers in the class room and parents who are not disciplining as they should. I think the population on the whole has an idea of the perfect child. When a child does not fit this cookie cutter mold because of handicaps they are inconvenienced by it and think the child should be made to fit.

The Ritlin (or any other medication) is not a cure all. When it wears off we can immediately see A.J. lose control. He does repetitive motions, runs wildly from one end of the house to the other and does dangerous things. When we forget to take his medication some where with us or goes to long with out it he begins to drool and shake his head from side to side. He must also have a pill before bed to fall asleep at night. A.J. was until recently taking naps. I do hope this will help other families that are dealing with these problems to be encouraged that "Gee, Johnny is not that bad after all." or " Gee, we are not the only parents out there with a child like that." You are also welcome to copy and share this with other families that are dealing with this. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Helpful Hints For ADHD Children and Their Families
by Dawna Martinez

God choose our homes to raise these special children. With God's help and wisdom we can raise them to direct there boundless energy and learn coping skills to have better attention so that they can grow-up loving God, serving Him and glorifying Him.

Make sure it is ADHD. Has the child had a recent hearing and vision check?

Consistent schedules are a must. Set up specific times for waking, chores, school work, meals, naps and bedtime. Explain any changes in routine ahead of time. Changes in routine can be very disturbing to these children.

There is a theory that some ADHD children are suffering from a lack of sleep. Their body compensates by rushes of adrenalin, they are so wound-up they don't sleep and their body gives them more adrenalin. Naps and rest can be very helpful to some children.

Set up clear and concise rules of behavior for the family, including the ADHD child. Rules, as well as consequences for breaking them, and rewards for appropriate behavior can be written and posted. Give plenty of love and affection.

The following items marked with an asterisk (*) in this list are from Chapter 2 of The Whole Hearted Child, Home Education Handbook by Clay and Sally Clarkson. Used with Permission

Verbal Discipline*

"Emphasis is on instruction, admonition, reproof and correction (1 Timothy 3:15,16). Verbal discipline can be either directive or corrective. Love is critical to all effective discipline, but even more so with verbal discipline."
Be aware that some ADHD children may seem not to hear you. Often these children do not process multiple requests quickly or accurately; therefore, it helps if parents first make sure they have the child's attention (make eye contact). Break down the request into several steps and repeat if needed. You may also have to physically show them how you want it done.

Behavioral Discipline*

"Emphasis is on providing incentives for doing right and consequences for doing wrong (Galatians 6:7,8). Behavioral discipline is usually corrective, although it can be directive. Natural consequences (loss of privileges) should follow general foolishness and wrong doing. Children have to learn sin and foolishness have consequences. When right choices are affirmed (kept track of on a behavior chart) and results in a pleasant outcome, (predetermined rewards) his will is strengthened to choose the right the next time."
Some ADHD children can be very aggressive and impulsive. As with all children, do not under estimate the power of prayer. Pray for them and yourselves daily. When the child is old enough teach him/her to pray daily for God's help in these areas of weakness (Philippians 4:13).

Physical Discipline*

"Emphasis for willful wrong doing (Proverbs 22:15; 23:13,14). The purpose is to make clear that rebellion, defiance and willful disobedience will be punished. Before administering, be sure the child knows why he is being disciplined; after comfort him, have him pray a prayer of confession to God, and then have him ask forgiveness of anyone who has been offended. Affirm your love for him/her. Never, ever use physical punishment in public, or as a means to shame or humiliate your child."

Remember that your child may have difficulty filtering out stimulation. Avoid in your home if possible distracting colors, busy decor patters, excessive noise levels, clutter and lots of coming and goings.

Keep a diary of foods eaten and effects, if any, on behavior. Some common culprits may be chocolate, tomato products, wheat, sugar, milk products and food dyes.

As Ritlin has a paradox effect (speed, yet calms child down) so can sugar and caffeine in large quantities in some children.

Create a quiet non-distracting area to do school work. ADHD children may need a lot of one on one attention to stay on task.

Go for quality rather than quantity in school work. Some ADHD children need a lighter load. As long as they master the concepts this should be allowed.

Some ADHD have problems with short term memory loss. They can tell you something in detail from 5 years ago, yet they cannot remember appointments, something you asked them the night before to do the next day or where they just put the hairbrush. They can even have trouble going to the store to buy two things and forget one of them.

Have daily to-do lists and the child marks off each completed task. Write things down, use calendars or personnel planners. "Have a place for everything and everything in its place".

Some ADHD children should not be flooded with petty time-consuming decisions. If he/she has problems with indecision, making them decide what to wear, what dessert to choose ect. will not make them better at decision making, but lead to frustration and tears. Give them a choice between two items instead of five.

Treating ADHD is often done with a multi-modal approach. This should include:
2.Behavior modification
4.Medication if necessary

Because ADHD is a neurological disorder and possible chemical disorder, even when the above is used there will be times when the child has very bad days. It may be the holidays (over-stimulation, off limit foods), it may be the child is coming down with an illness (chemical upheaval in the body) or stress of any kind make symptoms worse.
Being aware of these things can save the parents from unnecessary worry and help them cope until things are back on track.

This is just a partial list. There are many good books available.
THE WHOLE HEARTED CHILD: Home Education Handbook, by Clay and Sally Clarkson, Life Time Books and Gifts 1-800-377-0390
HOMESCHOOLING CHILDREN WITH SPECIAL NEEDS, by Sharon Hensley, Noble Pub. 503-667-3942, Excellent chapt. on ADHD
DRIVEN TO DISTRACTION: Recognizing and coping with Attention Deficit Disorder from Childhood to Adulthood, Edward M. Hallowell, M.D., and John J. Ratey, M.D., Library and bookstore
WHY YOUR CHILD IS HYPERACTIVE: Feingold Diet, Ben Feingold, Library and bookstore
IS THIS YOUR CHILD ?, Doris Rapp M.D., General elimination diet, Library and bookstore