Mitochondrial Disease: Preschool through High School

There are many myths about Mitochondrial Disease and that leads to complicated incorrect misunderstandings.  Although it is thought of a primarily a childhood disorder, it can actually occur at any age. 

Previously it was thought that it was only the mother that passed the gene onto the child, but it is now known that there are many genetic hereditary patterns that contribute to the DNA mutations inside cell patterns.  Mental retardation, seizures and related developmental issues do not always occur with Mitochondrial Disease, and there are many children with typical cognitive abilities.  

There is current on-going research suggesting a connection between HIV positive parents and Mitochondrial Disease in their newborns.

Diagnosis is a complicated process that may or may not include a muscle biopsy.  And at this time, there is not one test that determines the diagnosis.  Just as there is not one test, there is not one protocol for treatment.  And there is a huge gap of misunderstanding between “incurable” and “untreatable”.

There is on-going research connecting some children with Autism to Mitochondrial Disease.  This study is population based and so far it has found that this occurs only in a minority of cases.

What adds to the confusion about treatment is that each child can manifest the disorder very differently.  However the link between all of these children is the fact that learning how to play, a natural avocation of children, while conserving energy needs to be taught.  Teaching healthy play habits is where occupational therapy can make a significant contribution.

It is also crucial that this therapy/education process involve not just the parents but the siblings as well.  Including everyone in the process allows for the typical sisters and brothers to engage with their family as a contributor and not a by-stander.  This also may prevent their feelings of jealousy and rejection.

When you receive the diagnosis is very important.  If your child was diagnosed early and received services under (each state may have a different title) the Babies Can't Wait 0-3 programs than entering into the public school with special services may at least, initially be an easier process.

However many times this is not diagnosed early especially in cases where the symptoms are mild and do not manifest themselves until the child is in more task-demanding situations.

There are basically two avenues for a “Mito” child to receive services, for the child entering public education there is the IEP (Individual Educational Plan through the IDEA part C).  However state regulations can retain your child under the IFSP (Individual Family Service Plan) until age 5 when most children start kindergarten.

These are two very different systems and are not related to one another. IFSP focus is on the family interactions and what they can do to help the child. The IEP is only educationally based.  The IEP covers the child from ages 3-21.

The IFSP takes into consideration the needs and concerns of the family, and the IEP do not. These are two very different laws, and it is essential that families know the difference between State and Federal Laws.

Keeping records of milestones is very important when seeking services.  Dates of attainment of walking, sitting, standing, toileting, talking, swallowing, etc. not only are important to the pediatrician but the school in making the decision for appropriate services.

As your child progresses into elementary school you may begin to observe increased fatigue (as the school day is longer and more stressful with less “breaks), visual issues may appear and problems with reading may be noticed at this time, and increased occurrences of muscle cramping may be seen.  At this time the parents may also want to integrate benefits available to the child through the 504 (ADA law) for accommodations and modifications within the educational setting.

Provisions under the 504 are particularly important to children as they enter Middle School. Middle School is wracked with enough issues inclusive of but not limited to social expectations, increased homework and more writing writing writing! Not to mention the carrying of books from class to class.  At this time some children may opt for the use of a wheelchair to help conserve energy during the school day. 

Under the 504 parents can ask for modifications in scheduling, timing of tasks and assignment due dates, classroom settings, presentation of information and testing (such as an answer booklet instead of a worksheet), etc.

During middle school it is not too early to think about High School graduation. The type of diploma your child gets impacts post-secondary options. Be sure to ask about this very early on in middle school and again at the first high school IEP meeting.

An alternative to all this is home-schooling. This is a very personal decision and many factors need to be considered. Are your child’s needs being met in the public school setting, is health at risk during such a long school day, your child’s emotional status, etc.  However if your child is receiving related support services in the public school, you need to ask if these services will continue in the home-school setting. Some states send certified teachers into the home and other states leave that to the parent.  Related services may be provided but the parent would have to take the child to the public school, while others send the special services person to the home. All of this should be part of the parents’ investigation before a decision for homeschooling is made.

It is also important to know that under the IDEA (IEP) Plan, the mandate is for the “least restrictive environment”. That makes the priority of placement and services very rigid.  The first option is always placement in a regular classroom. Then the following is suggested: placement in a regular classroom with modifications; resource room assistance; separate classroom for children with special needs and last a residential or day program placement.

Throughout this process the occupational therapist is key in making sure that milestones and educational outcomes are met.  Working with the teachers and the families the OT addresses issues of energy conservation, balance, mobility, technical support, strength, balance, coordination, sensory modulation, play skills and activities of daily living.  These are skills that will be needed not just in school but throughout the life span.  The occupational therapist can also help with the establishment of daily exercise plans to do both in school and at home.

Because the Federal mandate of the public school is to “normalize” educational settings, parents may need to ask for occupational therapy to be part of their IIFSP/EP Plan.

Obtaining services is often a complicated process and parents can learn more about this process and occupational therapy in the book, “Learning Re-Enabled” 2^nd edition, available through Amazon.com. and other booksellers.

Susan N. Schriber Orloff, OTR/L, FAOTA is the author of the book. “Learning RE-Enabled” a guide for parents, teachers and therapists,(a National Education Association featured book) as well as the WIN™ Write Incredibly Now™ Program (available through YourTherapy’Source.com).  She is also the CEO/Exec. Director of Children’s Special Services, LLC an occupational therapy service for children with developmental and learning delays in Atlanta, GA.  She can be reached through her website at www.childrens-services.com or at susanorloff@childrens-services.com.

Is it ADD or Auditory Processing Disorder? How to tell the difference

Auditory processing is when the brain cannot “hear”.  “DA” becomes “GA” and “dat” becomes “that” and “three” becomes “free”.  This does not usually show up in reading where some children have difficulties with phonetics when “dragon” becomes “draw”.

And it is acutely different from ADD/ADHD when behavior is the component that is the distracting factor for discriminating directions and organization.  Actually APD can be 3 disorders in one; which is why it is so hard to diagnose.

All of these disorders require that a speech pathologist diagnose these issues correctly. And finding the right clinician is as important, if not more than, as seeking out the right treatment.

The child with APD may be experiencing auditory memory issues, sound discrimination, and sound localization.

A child with APD is literally living in a world of auditory chaos. It as it they are living in a world of constant “hum” that is blocking out essential information so that they are “hearing” their world through a static filter.

In contrast the ADD/ADHD child is experiencing his or her world in “fast forward”. They are catching only “snatches” of what they should be doing so that they need and require multiple repetitions so that complete information can be received and utilized appropriately.

In the clinic these children can look similar but in truth they are very different.  However, both are experiencing neurodevelopmental delays that negatively impact their ability to perform both in academic and social situations.  Both carry with it emotional factors that if misunderstood, can look like oppositional behavior issues.

The ADD/ADHD child has more active random responses to stimuli while the APD child just appears “detached” and “uninvolved”.  The APD child can shut down with too much stimuli and “phase out” while the ADD child often escalates behaviors that are hard to modulate and/or tamper down.

Both however, can be subject to temper tantrums due to frustration and both can be very hard to teach because the “message” is not getting across. With the APD child comprehension is blocked; with the ADD child it is as if the directions are being broadcasted with a lot of static.

With the ADD child creative repetition is an excellent way of teaching new skills and reinforcing old ones. With the APD child multiple sensory and cognitive pathways must be recruited for the child to understand since the auditory route is not giving direct clear information.

Characteristics of the APD and ADD Child –however keep in mind that issues such as fear of failure can be seen in both children and that there is some overlap.  These lists are meant for general clarification not as an absolute.

ADD/ADHD Characteristics	APD Characteristics
There are two main types of ADD ·       Inattentive ·       Hyperactive	Also known as Central Processing Disorder
These children can be: ·       Impulsive ·       Hyperactive ·       Short attention span Doesn’t pay attention to details ·       Makes careless mistakes ·       Has trouble staying focused; is easily distracted ·       Appears not to listen when spoken to ·       Has difficulty remembering things and following instructions ·       Has trouble staying organized, planning ahead, and finishing projects ·       Gets bored with a task before it’s completed ·       Frequently loses or misplaces homework, books, toys, or other items ·       Difficulty with transitions ·       Can be oppositional ·       Can have difficulty sleeping ·       May be tantrum prone ·       May need situational changes in order to shift to different activities ·       May be compulsive ·       May have anger management issues	These children can be: ▪       Easily distracted or unusually bothered by loud or sudden noises? ▪       Noisy environments can be upsetting ▪       Behavior and performance improve in quieter settings? ▪       Difficulty following directions, whether simple or complicated? ▪       Reading, spelling, writing, or other speech-language difficulties? ▪       Abstract information is difficult to comprehend? ▪       Verbal (word) math problems difficult for your child? ▪       Conversations are difficult to follow ▪       Tends to withdraw from social situations (even though they desire to be included) ▪       Over-reactive to corrective remarks ▪       Does not know when to ask questions ▪       Fear of failure ▪       Overly dependent upon teacher/parent/etc. ▪       May have articulation issues ▪       Does not understand jokes and may have difficulty reading facial expressions

Complicating this is the fact that often these two diagnoses can be seen co-existing in one child.  Often children with these issues are best seen in both occupational and speech therapy. When possible, co-treatments are often very beneficial for maximum therapy outcomes.  Children with ADD and/or APD are highly emotionally charged individuals. Therefore all interventions must include activities that respect both the psychological and the neuro-developmental aspects of performance.

Susan N. Schriber Orloff, OTR/L, FAOTA is the author of the book. “Learning RE-Enabled” a guide for parents, teachers and therapists,(a National Education Association featured book) as well as the WIN™ Write Incredibly Now™ Program (available through YourTherapy’Source.com).  She is also the CEO/Exec. Director of Children’s Special Services, LLC an occupational therapy service for children with developmental and learning delays in Atlanta, GA.  She can be reached through her website at www.childrens-services.com or at susanorloff@childrens-services.com.

Teenagers, ADD and Tantrums

Seems that this is what your life is like once your child hit those irrepressible teen years. They put parents on “mute” and “yada-yada”.  Both of you wind up frustrated and weary.

Each of you feels like you are walking on cracked glass and almost every encounter winds up in someone yelling and the other person slamming a door.

It doesn’t have to be this way. Because both of you want the same things!  Communication, respect and acknowledgement.

Parents feel like they are living in a warp-speed zone, one minute their child is a child and the next their child is shouting for independence and for you to more or less ‘get out of their face’.

Like the phases of the moon, we all live within habitual cycles. Teens are even more so with hormones flaring and confidence waxing and waning.  Complicating this are teens who are on ADD medications. These medications have an internal “self-life” and when they are wearing down is usually when you are seeing them at the end of the day.

This produces a chaotic atmosphere that seems to naturally lend itself to meltdowns and tantrums.  Digging ones heels in and just saying “no” is but one way to control the chaos and get things what seem to be swirling under control.

But there is another way and no one has to be the “loser” and no one gets to be the “winner”.  Just remember your struggles with your teen are really about POWER. Who has it, who wants it, and who is going to defeat whom?

How about starting with changes the communication patterns.  This will take time, and it will not happen over night but over time this can be a great way for each side to get heard, no one get negated and for compromise to occur.

Here is an example scenario:

Jake a 15 year old with a diagnosis of ADHD has a horrible time getting started with homework. He has master procrastination to an ‘art form’. His younger sister, Alice, aged 10 still sees Jake as a play-pal, and expects him to come and be with her when he gets home. He gets frustrated with the interruptions. Alice gets her feelings hurt and pouts, Jake yells and mom gets into the fray and everyone winds up upset and unhappy and angry.

Because things seem to be happening in a repeat pattern –change the pattern.  Learned responses are not easily changed so do not expect instant harmony.

Set the “ground rules” (after discussion with both children).

This can be done on a simple chart and after a while the question can be not “what is the matter” but did you work it out on the chart”?

Before you start however, acknowledge that Jake's feelings are real and that you really understand that he feels like he is between a "rock and hard place".  Empathy counts and you can even talk about some school issues you had (didn't we all??).

The first time you talk about planning reactions and actions the chart may look like this:

Jake

What is upsetting you	What do I know about what has to happen	What do I need to get homework done and not be angry	What out come do you want RIGHT NOW	What outcome would make you feel good about yourself
I hate homework			Not have homework
I can’t do it			Someone to be with me or do it for me
Alice keeps interrupting me			Keep Alice out of my room
I’ll never get it done			Just go to bed

Then together the both of you think it through, talk it out and fill it in: (maybe not all in one session)

What is upsetting you	What do I know about what has to happen	What do I need to get homework done and not be angry	What out come do you want—RIGHT NOW	What outcome would make you feel good about yourself
I hate homework	I have to do the homework	Organize it and do one piece at a time and take breaks between subjects	Not have homework	Getting the homework done neatly and not worrying if I got it “right”
I can’t do it	I can take breaks and ask for Mom or Dad to check it piece by piece	I can find a time to ask the teacher during school if I don’t understand what I am to do Or I can call a classmate and ask about it	Someone to be with me or do it for me	Repeat and repeat and repeat, “I am learning…I am not supposed to know it all” and just do my best.
Alice keeps interrupting me	I like playing with Alice but my homework makes me nervous	Set a time with a timer (10-15 minutes maybe during a break) to play with Alice and when that time is over we will both agree that playtime is over	Keep Alice out of my room	Tell Alice I really like playing with her but I need her to help me stay on track with time because it is so hard for me to do it alone.
I’ll never get it done	Why do I have to be the stupidest person in the class?	This is fortune telling you do not know everyone’s grades or how they understand the assignments. But being organized, asking questions and letting mom/dad check it will help with getting it done with your best possible effort and not doing it to get it over with.	Just go to bed	Being organized and doing one subject at a time and putting each subject in separate piles helps me in getting homework done~ it is less overwhelming than dumping everything onto the floor of my room and just staring and “monster” on my floor. And I will sleep better!

Now when Jake gets upset his mom is not the Master Solution Maker, he is! He gets to be in charge, figure it out and choose what he wants to do.  With support and encouragement, Jake learns to make difficult decisions in frustrating situations by creating a visual of his thoughts, ideas and feelings. Eventually, the goal is for Jake to make his own chart, recognize when his frustration is getting the best of him and create personal pathways for self-regulation.

This allows Jake to be the “grown up” (independence), talk rationally about what is going on with him (communication) and feel like he is no longer being treated like a baby, he has more self-control (self-esteem).

Learning to do this is a process, this is not a race there are no time limits. But the more charting out one’s actions, reactions and feelings are done, the less chaos, the less frustration and the less fall back into temper tantrums.

No one said growing up was easy, and even though there are “Blessings in a Skinned Knee”; you don’t need one everyday.