Friday, April 28, 2017

Helping Special Needs Children During Church, Part 1 of 3 Part Series

My husband and I love to attend church to renew and prepare ourselves for the week.  We believe that a belief in something greater than ourselves has helped us raise the children we have been given. Therefore, it has been important that we attend church to seek guidance and worship as we believe. So each Sunday our family attends 3 hours of worship services.  The first hour is for everyone and we listen to people speak about the gospel of Christ.

Ready for church. Obviously this is a before shot.

During the second and third hours we separate into age groups and have Sunday School.  Over the years this equals a lot of hours in church.  It's hard enough to keep a wiggly 2 year old quiet during a meeting, but add special needs, sensory issues, and ADHD: WOW, do we have a party!

During the years we have come up with some strategies to help our children manage during this time so that we can worship.  


Sitting still for 3 hours was just not possible for my son with ADHD.  He needed movement! During the first hour of church he would come to my husband or I and be allowed to go for a walk with one of us.  We did laps around the church and took in the fresh air.  It didn't solve all his wiggles, but it definitely helped.  And giving him the freedom of being allowed to ask and go on a walk helped him feel in control of his situation.

We talked with our son's teachers too about how they could allow him some time to move.  Often times they would allow him frequent trips to the drinking fountain.  Other teachers had the whole class involved and would start with some dancing, jumping jacks, or other activities that involved movement.  Other teachers had all members of the class walk around the church before the lesson started.  Each solution was a bit different, but each helped our son get the movement he needed.


We never punished for meltdowns or bad behavior in church.  I didn't want to associate church with negativity.  So instead we set up a reward system with ice cream.  And who doesn't love ice cream? Each Sunday we all started off with the promise of 3 scoops of ice cream and all the toppings.  If the children were able to maintain good behavior they got the reward immediately upon returning home. (I know, not the healthiest lunch, but I needed to attend church for me, and this worked.)

If they had to be reminded 3 times to sit quietly or stop fighting, etc, they would be penalized 1 scoop of ice cream.  I don't think anyone every lost all 3 scoops of ice cream because ... well ice cream.

We did have to cut out any other ice cream moments during the week so that Sunday was special. And we had to maintain a pretty good ice cream supply in the refrigerator.  My kiddos responded great to this reward system.

Think of what your family loves.  Reward them for being able to sit through church.  It may be that in the beginning you reward simply for going to church.  Then a reward for sitting for part of the sermon.  Baby steps are the key.  Rewards do motivate and helped us improve our Sunday sanity.

Sitting in the Same Place

One of our sons is autistic and he craves routine.  He liked to sit in the same place at church each week.  Think Sheldon from the Big Bang Theory.

Now we never kicked anyone out of "OUR" pew if we arrived too late, but we started arriving early enough to claim "Sheldon's Spot" each week.  We often had to get there 30 minutes early to do this, but it helped our son be comfortable.

Arrive Early

Arriving before a lot of people were present helped my children enter the room more calmly. Entering into a room filled with people, music, talking, lights and movement can be overwhelming.  So we found that if we arrived when the chapel was almost empty, no music was playing yet, and things were calm, we could set up our family and have things go more smoothly.

Sitting in the Foyer 

Some children are overstimulated by the lights, people, singing, and noise.  It is difficult for them to sit with so much stimulation and not have a meltdown.  Sitting outside the worship hall in the foyer allows you to hear the sermon, but avoid the over-stimulation of so many people.  Or perhaps in your church they have a room you can sit in and still hear the sermon.  Talk with your eclesiatical leader to brainstorm some options that might be available to you.  

Sit near Support Groups

We liked to sit in church by people who were aware of our issues and were understanding of them.  If both of us had to leave with a child, the remaining children would be watched over by friends.  Or if one of the children had an outburst, those around us were understanding and would help us deal with the situation.

Ask friends to sit near you and explain what you might need in certain situations.  Help them understand when you might need help and when you would be able to handle the situation.  They may come up with some ideas that you haven't thought of.

Activities and Gum

During church we allowed the children to color and play quietly with toys.  When my sister sat with us she taught me to massage my children's hands.  This deep pressure helps calm a child and the bonding nature of touch helps create a positive experience.  Another deep pressure activity is simple: gum!  I have a friend who brings multiple packs of flavored gum and the children can chew one piece at a time, but have as many pieces of gum as they want to have.  Now with this idea, supervision is necessary so the gum doesn't end up under pews, on the floor, or in hair.  But chewing gum is a deep pressure activity that can help keep kids calm.  

Think outside the box

One of our children still disliked church after trying all of the above to accommodate his needs.  The florescent lights bothered him and the noise of singing was often too much.  One Sunday he spent the entire first hour in the inverted turtle position (on his back all four limbs flailing), screaming, crying, and refusing to enter the building.  I endured the stares of parents who didn't understand autism and sensory processing issues.  I could tell by their looks that they thought that poor parenting and a spoiled child were the reasons for this meltdown.  

We were ruining our relationship with our child.  We all dreaded Sundays and we did NOT feel refreshed after attending.  I felt more like I had gone 3 rounds with the heavy weight champion.

I had had enough. After church when we were all calmed down, I compromised with this child.  I told him I just wanted him at church for one hour.  That was all.  And he could pick the hour.  After this one hour, we would come home and watch movies about the scriptures and have our own lesson.  

The look on his face told me I had done the right thing.

I asked to be relieved of my church responsibilities of singing with the little children during hours two and three.  This allowed me to go home with our son while my husband stayed with our other children.

Our one hour of church went better after this.  It wasn't perfect.  But our son knew that he didn't have to endure 3 hours of church and that made it more manageable for him.  We continued to work with him to process what he was experiencing.  Things slowly improved.

After a few months of this we hired a respite worker for Sundays.  He came with us to worship services and if our son felt like staying for all 3 hours, they would stay.  If he felt like he needed to go home after one hour, they could.  This allowed my husband and I to attend our meeting and feel renewed.  And this allowed our son the ability to go home if church was too much for him.

Some Sunday's he stayed, but most Sunday's he went home. This continued for years.  And it wasn't until his mid-teen years that our son was able to consistently attend all of church.

Be patient. Pray.  Ask for guidance.

We still have rough Sunday's when I wonder why I am doing this.  I would love to hear what you do. If you have kids that struggle with church services, what have you done to make church easier for them? 

After church, Sam and Grace have had enough!

Tuesday, April 25, 2017

My PM Routine

Have you ever gone to bed at night and not been able to sleep because you were thinking about what happened that day and/or what was going to happen tomorrow? I know there have been nights in my life where it took a good hour or longer to fall asleep because of replaying the day in mind. I've also spent time awake worried about what tomorrow would bring.

I've already written about my AM Routine and how it helps me get through my day. One of the key components of that routine is the set of declarations I use to put a positive mindset in my brain. I also have a PM Routine where I go through a set of five steps to help me wind down and not worry about what happened today or what's going to happen tomorrow.


Each night I take out my journal and determine what I want to record. Sometimes it's a situation that played out with one of the children. I can record successes I've experienced or release frustration. I record what I feel was relevant from the day which then removes that from my mind and allows me to not replay it over and over again.

My After Story

I have a story about where I want to end up. I read the story every night. This helps me to focus on what I need to do in order to get where I want to be. My story has eight sections:
  1. Personal - a brief paragraph of who I want to be
  2. Financial - a summary of what I want to do in life from a financial standpoint as well as a statement about what I need money for
  3. Relationships - three paragraphs describing the relationship I have with God, Cheryl and my children
  4. Physical Strength/Health - how I picture my body and the way it works
  5. Success/Travel - what success looks like for me and some travel goals I have
  6. Spiritual - my connection with God and what kind of example I am in living what I know to be true
  7. House/Location - the kind of house I live in and where it's located
  8. Mission - what my mission is in life and how I strive to find and live it
Reading these each night helps me to relax as I picture each one in my mind. I can see the progress I made during the current day and know that tomorrow will bring more progress.

Patriarchal Blessing

In my religion there is a person who is given authority to give a blessing that discusses your life. It is called a Patriarchal Blessing. I received mine when I was 18 years old. In it is a description of what I can expect out of life if I follow God's plan. The blessing talks about talents I have as well as gifts I can receive. Reading the blessing helps me to align my spiritual self with my physical self and recognize where those two have interacted during the day.


I take anywhere between 15 minutes and an hour to read. I read all kinds of things. Right now, I'm reading "Make Today Count" by John C. Maxwell. I read various genres. Science fiction is definitely my favorite and currently am waiting for the next book in the "Dresden Files" by Jim Butcher, "The Stormlight Archive" by Brandon Sanderson and "Lightbringer" by Brent Weeks. Reading helps me to shift my focus away from the cares of the day and into a different world. This helps my mind to also change gears and allow it to be ready for sleep.


Finally, I pray. I give thanks to God for all the things (good and bad) that happened during the day. I converse with Him about things that happened. I ask for guidance. I pray for my wife and children. Prayer allows me to connect spiritually one last time before going to sleep and check-in with my Higher Power.

Grace's PM Routine

Once I got my PM routine in place, I started teaching my children about it. Grace has a PM routine and when it's time she makes sure we all know it. The first part of the routine is to go scorpion hunting. She and I gather our tools, torch, lighter, scraper and blacklight, and head out into the yard. She and I then look for the arachnids on the house and fence. When we see one, she usually tells me to "scrape it", even when torching it is a better option so it doesn't escape. 

Last night as we were out hunting she asked me "Can scorpions crawl up your legs?". I responded they could and she started shaking her legs all the while exclaiming "ew, ew, ew". It's a fun way to end the day with her.

After hunting dangerous creatures it's time for bath, jammies, teeth brushing and tucking in. This can be an adventure in and of itself. Keeping her focused on the tasks can be challenging, but she eventually gets everything done. 

At tuck in time we have one more routine. If you've seen Monsters Inc., you will get this. I get to look at Grace just before turning off the light and say "You... Go... To... Sleep... <snoring noises>". It's a fun way to get her to smile before dreaming of tomorrow.

Having a PM routine can help to alleviate replaying the day and worrying about tomorrow. What things do you do to make sure you get a good night's rest?

I Choose Laughter

Meltdowns used to be a common occurrence at our house. Our special needs children meltdown when they are not being understood, because of a sensory trigger, because they are transitioning, because they don't understand something, or for a dozen other reasons. These meltdowns can include yelling, hitting, name calling, insults, aggression, and property damage. I have been told how horrible of a mother I am, how mean I am, and how one child or another wishes they never would have been adopted.

Sometimes, the children are hoping for a reaction.  They want to hurt us as much as they are hurting inside.  So I have learned that no matter what the insult is, I do not react.  I remain calm.  I tell myself often: "I am the eye of the storm.  They can rage, I am calm."

So one evening, Child X was raging.  He was angry at us and became aggressive.  As we used a hold, he became more angry and upped the insults.  Anything he thought would hurt us, he yelled.

Finally, things calmed a bit, and I thought he might be calming down.

Nope!  Out it came. The big one!  The F--- word.  From my darling 8 year old!

Now understand, BJ and I don't swear. We don't yell at each other and we certainly have never sworn at each other.  But there it was.

Child X waited--years of practice helped us not react.  We sat as calm and quiet as we had been before.  Any word from us would have fed the raging.  So we were quiet and continued to wait for the storm to blow itself out.

After another 20-30 minutes of exhausting ranting, Child X was worn out and we were able to put him to bed.

As we readied ourselves for bed, I thought about his swearing.  What was he thinking would happen if he used that word?  That a bomb would go off?  That we would explode?  That we would be in such awe of his language that we would let him have whatever it was he was raging about?  And I started to laugh.  And I couldn't stop.

Realize, I was exhausted.  I was relieved that the hours of raging were over.  And I was still processing how I felt about Child X using that word. But out came laughter.

I shared my image with BJ and he started to laugh as well.  Tired, exhausted, worn out and all we could do was laugh.

We weren't laughing AT child X, but at the use of the word.  That one word that he thought might win the battle.  We went to bed tired, but feeling better than we had before because we were able to laugh.

Now, I could have chosen to cry at his use of this language.  I could have gotten upset myself and prepared a lecture.  However, that wouldn't have helped anything.  So I chose laughter.

Laughter does not change the situation, but it does change me.  I find myself more able to cope with the pressure and exhaustion of raising children (especially those with special needs) if I can find the humor in situations.

When have you found the humor in difficulties?  How does that help you deal with difficult times?

Friday, April 21, 2017

Common Variable Immune Deficiency

Sam is our middle child and fits many of the middle child stereotypes.  
  • Family clown
  • Master Negotiator
  • Independent
  • Risk Taker
He is our family's mover and shaker.  If things get boring, count on Sam to stir up some fun, aka trouble and mischief.

He also is constantly on the go.  This boy never stops.  He loves soccer and has great natural talent. He loves the outdoors, science projects, building things, Legos, air soft guns, and anything that allows him to be on the go.  

So a few years ago we were shocked when he told us he was too tired to go to soccer practice.  A few days later he asked to be pulled from a game because he was tired.  Then came the day when he slept, all day.  I mean all day.  No breakfast.  He slept through lunch.  He woke long enough to have a snack and he returned to bed.  Not normal for Sam.  Not normal for any healthy child.

Sam asleep during the day.  A sight we never saw when he was younger.

Off the the doctor's office we went.  We ran a series of blood tests which told us he was recovering from mono. That eased my worry and we allowed him lots of rest and good food.

Sam recovered for a while.  But the cycle started again. During the next 2 years, Sam dropped out of soccer, quit playing with friends after school, had mono twice, and began having migraines.  

We are blessed to have a fabulous pediatrician (who adopted special needs children as well).  He trusted my instincts that something was wrong and continued to test Sam.  The tests came back that Sam's IGG levels were a little low. So our doctor sent us to an immunologist.

After more testing, Sam was diagnosed with Common Variable Immune Deficiency.  CVID is a disorder that impairs the immune system which means Sam is highly susceptible to infections.

Treatments include a medication called Hizentra.  IGG levels had to drop pretty low for the insurance company to approve the treatment.  And the medication is expensive enough (thousands a month), that we needed insurance.  

So we waited 1 year for his levels to drop and I worried about his health.

Finally, we started infusions of Hizentra about 6 months ago.  I get to administer them to Sam at home which includes placing 4 small needles in his body so the medication can slowly be absorbed. Treatments usually take 3-4 hours, including 1 hour of numbing cream before placing the needles. The treatments are painful and sometimes cause severe headaches.

All the medication, supplies and equipment can be overwhelming.
Preparing for the injections with the numbing cream.  A must!!!!

Sam prefers leg sites, although we prep other areas as well.  Just in case!
Injection sites leave large bumps for a day or two. 

Our first infusion required six sites so the body could get used to the medication.

Last week I had placed 2 needles, both of which were painful when Sam refused to continue.

Sam-Take them out!  I'm done. (Tears streaming down his face)

Me-I can't Sam.  I have already drawn the medication.  

Sam-Nope, I'm done!  Get them OUT.  I am going to rip them out.

After about 10 minutes of this I persuaded him to put Lidocaine back on the spots we were planning on using.  20 minutes later I was able to place the needles and continue with the injection.

Although we were able to continue, I had to leave the room afterward and go have a quiet cry in my room.

Sam doesn't like the injections.  He hates the headaches he gets.  He feels like he has enough problems from being exposed to meth during pregnancy.  It's not fair.  And I have to agree that's its not fair.  

I reached out to a friend who's daughter has similar issues.  She was able to give some good advice and told us about a conference for families dealing with this issue.  I want to go.  I want Sam to see he isn't the only one. That others understand what he is experiencing.

Hope is difficult but not impossible right now.  I am grateful for new medications that are working to save his life.  We are blessed! I would love to hear what those of you with a chronically ill child do to help buoy them up.  

We have hope.

Little Voice Management

What are "little voices"?

So what do I mean when I say Little Voice Management? Well, I'm talking about the thoughts that come into our minds. These thoughts can come from either internal (what I think about myself) or external (what others think about me) sources. These voices can be positive or negative. The trick is to figure out how to properly manage these voices so that the negative ones are rooted out and the positive ones get planted properly.

Personal Experience

The earliest I can remember letting negativity take root was around 8 years old. I started to have thoughts about myself that weren't elevating. I then began to find external voices that mirrored those negative thoughts. These thoughts would show up when I was about to try something new. Negativity was my mindset and it affected my actions.

Through my teenage years these kind of thoughts were persistent. There were times when I felt that no one cared about me. I even had a moment where I wondered if people would even notice if I weren't around.

With these types of thoughts comes a heaviness. It feels like you are weighed down and can't move forward. The thoughts always had a similar tone, such as:
  • You're not good enough
  • You can't do that
  • People don't like you
  • It's too hard
Eventually, I developed a chip on my shoulder. Everyone was out to get me.

At age 25, a co-worker finally told me "Not everyone is out to get you, you know". That stung. I didn't realize my attitude was apparent in my actions. It stuck with me, but I didn't know what to do about it.

Over the next few years I struggled with changing how I thought. I tried a few things, but I really didn't find anything that solved the problem.

As parents, we had been through a lot. With three special needs kids, life can be exhausting, especially when your mindset is negative. Then we began taking some classes and something clicked. I learned techniques that could help me change the negativity into something positive. This helped me as a father to look at things in a new light. I am able to dismiss the negativity when it surfaces instead of allowing it to affect my children negatively.

Personal Mantra

One of the techniques I learned is to have a personal mantra(s). My go to mantra is:

"I control and manage my internal noise"

It is a simple statement, but it tells my brain that I am in control and that I decide what to think. I have been using this mantra for the past year. There are occasions when I have to repeat this mantra in order to get rid of stubborn negativity, but using it consistently and persistently forces the negativity out of my mind. 

I am more positive person. I have become less reactive to external situations. My outlook on things has shifted from the negative to the positive.

I have used other mantras to help me stay positive. These are ones that I have used to chase the negative away:

"I am a good father"
"I have knowledge and experience to share"
"I am balanced, empowered, and inspired"
"I am courageous"
"I have faith"
"I have wisdom and understanding"
"I endure to the end"
"I spend time with my children"
"I look for teaching opportunities"

Each of these mantras helps me to get past the negativity that comes into my life and focus on the positive.

Controlling my thoughts has also led to being a better parent. I find that when I have control, I am more patient with my children. I listen more. I help more. I play more. I stop trying to fix and/or solve everything for them. 

As a parent, I can see when my children's thoughts are turning negative. I teach them to recognize negative thoughts and replace them with positive ones. 

The law of replacement

I have found that when I remove the negative thoughts from my mind that something needs to fill the void left behind. I call this the law of replacement. For instance, recently I gave up drinking caffeinated soda. This habit had to be replaced by something otherwise I would go right back to drinking soda again. I've replaced that habit with drinking water.  

When it comes to replacing negative thoughts, you need to put in something positive or another negative thought will fill the gap.

Using a personal mantra is one technique I employ to help keep my mind free from negativity. I have another technique that I use nightly that really helps me prepare for the next day. I will share that technique in my next post.

Wednesday, April 19, 2017

Evidence Based Happiness

My daughter and I have a routine.  Everyday on the drive to school we talk through what her day is going to look like.  It goes something like this:

Mom-What kind of day are you going to have today, Lia?

Lia-An Amazing, Fantastic, Wonderful Day. (This is after months of practice. In the beginning the answer was, "I don't know."  Bzzz wrong answer.)

Mom-How are you going to feel when you walk into class today?

Lia-Strong and Smart.

Mom-What happens if there is a surprise quiz today?

Lia-I'll ace it.  'Cause I'm smart (did you hear that positive declaration?!)

Mom-What things do you see during your day?

Lia-I'll see people who are alone and ask them to play.

Mom-I like your day!  That sounds like an amazing, fantastic, wonderful day!

Now some people might say: "That is silly.  You can't just tell yourself your going to have a great day and then have one.  What if something bad happens?"

To that I say, of course you can plan your attitude.  We do it everyday.  The kind of day you will have is based on what you expect.

For example, look around the room you are in and find 3 red objects.  Now without looking, tell me what is blue in the room.  I know, that's not fair, I told you to look for red so you did.  You looked for what I told you to look for and ignored anything else.

And every day my daughter and I tell each other to look for the happy things, and every day we find them.

My amazing grandmother used to tell me that "Happiness is a Choice."  It took me years to discover the truth behind the simple saying.

For example, two people washing up dishes after dinner, with different attitudes, are having two entirely different experiences.  One is miserable and can't wait for the chore to be over so that they can be happy.  The other is already happy, and knows that they will be happy after they finish as well.


Attitude is not thrust upon us by some unknown force.  We are that force.  We choose the attitude.

So everyday that my daughter and I plan for a happy day, we find it.  It isn't perfect; bad things still happen.  But we find the good in each day.  Because it is there!  The evidence is all around us.  We simply EXPECT to see it.

I challenge you to try it.  Who knows?  Today may be an amazing, fantastic, wonderful day for you too.

Tuesday, April 18, 2017

Our 911 Group

Thirteen years ago we packed up our little family and moved to the desert.  Levi was barely 3, Ellie had just turned 1 and we had a new baby who was 1 month old.  We moved away from our wonderful support group of friends and family.

At this point in time Levi had some behavior issues, but no diagnosis.  That would come later. With 3 children 3 and under, we felt alone and overwhelmed.

One particular Sunday we were struggling to keep the children quiet (not successfully) so those around us could worship, and perhaps carve out a minute or two for myself to listen as well.  A sweet woman behind me leaned forward, smiled at me, and pulled Ellie into her arms. Little did I know I had just met my angel and my first 911 Group member.  Liz and her husband Kyle had 3 children, all of whom were out of the toddler age.  They adopted my family as their own and soon had us over for Sunday dinners, fun afternoon swims in their pool and the occasional horse ride.

As Levi's behaviors progressed from temper tantrums to extreme anger and violence, Liz was the person I confided in about my struggles with Levi.  It wasn't a secret, his behavior was out of control and he had meltdowns in public and private all the time.  I was worried about what might be wrong and she helped me talk things through.  I was worried about the safety of my other children and my own sanity.

Levi was large for his age, but still young.  I could pick him up and remove him from hurting the others, as long as I was close enough when the meltdown began.  Unfortunately, I still had 2 other children to care for and a house to run and I wasn't always within arms reach when the anger and violence began.  And his meltdowns could last hours.  This was physically exhausting and stressful for me.

I was living on caffeine, fear, and adrenaline and was close to breaking with the daily meltdowns.  I called Liz during a really bad meltdown and tearfully asked her to come help me.  When Liz walked through the front door, Levi saw his good friend and an interrupt happened.  The meltdown stopped. He was distracted by a friendly face and forgot about why he was upset.

We had been searching for the reason behind the meltdowns. BJ and I took parenting classes.  We found a psychiatrist for Levi.  We went to a therapist.  We saw multiple doctors and were moving forward with getting him tested.  We were exploring many options to help us understand the source of the problem, but the process can take years and nothing had worked so far.

I realized that having Liz come over stopped Levi's meltdown. We needed to "interrupt" his behavior pattern and then we could distract him with other things.

After I realized this, I called Liz over many times to help me stop a meltdown. I didn't need her for every meltdown, just the most aggressive and violent ones.  I began calling her 1-2 times a week and I soon realized this was too much to ask of one person.

So I prayed and asked God to help me find people that could help me.  I looked for people who had experience with special needs or mental illness because I knew that they would understand and have compassion for our situation.

One older couple I selected because their son had been diagnosed with schizophrenia. One friend I asked to help had bi-polar disorder.  Another had a mother with mental illness.  I approached each friend after much prayer and told them what I needed.  I needed people willing to help us at a moment's notice, who wouldn't be scared by Levi's aggression, and who would come with compassion and love.  Each person I asked was so kind and willing.  I couldn't believe how much God had blessed me.  I soon had a group of people willing to help.  I felt grateful that so many people were willing to help us.

One Sunday after church (which seemed to be a trigger for Levi), he was having a particularly bad meltdown.  I called the older couple and asked for help.  They came within minutes loaded down with board games.  They walked in (ignored his behavior), set up a game, and asked if he wanted to play. Of course he did!  He loved games and attention.  Interrupt successful.

Another friend came as I was trying to load the car with all the children.  Levi hated car rides and was close to kicking out car windows.  She climbed in the car with a about 30 keys on a key-chain and a lock in her other hand.  Again ignoring his behavior, she told Levi she couldn't figure out which key unlocked the lock.  Could he?  Interrupt successful.  And he became so interested in the lock and key puzzle, he left to spend the day at her house.

As the 911 group began easing the burden that was on me, I called on my neighbors next.  I found out my next door neighbor worked with special needs children.  She taught me gentle holds I could use and how to get him to release hair or a bite.  No judgement.  She offered compassion, understanding and help.

Other neighbors offered to be a refuge for my other children who were by now 3 and 4.  I could send them to any of 4 different homes willing to take my children in so they wouldn't have to be around during a meltdown.  Often, they would send someone to check on me as Levi grew older to make sure I was okay.

This 911 Group lasted 11 years.  I am still overwhelmed by the love, understanding and compassion of the people who chose to help me.  I never felt judged by them.  And as Levi grew (he is now 6'4" and 270 lbs!!!) they continued to help us and look after us.  Many of them still check on us to see how things are going.

If you are struggling with behaviors that are difficult to handle, I would suggest you create your own support group to help you.  Here are some things I found helpful when creating this group.

  • If you are blessed to have family close by, start there.  Sometimes those close to us would love to help, but they don't know how.
  • Look for people with experience with mental illness, special needs, or chronic illness.  They will often be compassionate and understanding of your situation.
  • Pray about people that you should invite.  I had no idea my older neighbor worked with special needs children.  God led me to her and she was a wealth of knowledge.
  • Explain to the people helping you what you need.  For example, I needed people who would ignore Levi's behavior but be able to distract him.  I didn't need a person to discipline him, I needed people to love him.
  • Let people know how to get to you.  When I was in the middle of managing a meltdown, I couldn't answer the door.  I needed them to just walk in and find me.
  • Have a code word.  At first I would call people, but after a while I could just text HELP and they would come. 
  • Educate them to the interests of your child.  Levi loved games, horses, puzzles and the park. People came prepared with those things to distract him.
Over the years Levi received the help he needed.  That story is for another day, but during the time of trial and error, we needed help.  Don't be afraid to ask for help.  Some people may turn you down, but many will be willing to help. 

Wednesday, April 12, 2017

Difficult Discussions

Have you ever felt up a tree when it comes to having a "difficult" discussion (maturation, behavior, grades, social interactions)? I know I have. What are some things that one can do to make the discussion a little more comfortable? I have found the following to be helpful:

Context - Context means, how am I going to approach the topic at the beginning of the discussion. What am I going to say to introduce things? And how am I not going to get this kind of response right off the bat? 

Planning - When it comes to planning, it's more than what you are going to say. It deals with:

  • Where - where are you going to have the discussion? At home? In the car? At a restaurant? At a park? Location can make a big difference in the comfort level of the child you are having the discussion with.
  • Resources - what do you need for the discussion? Are there some props? Do you need food? What about books, online articles, magazines? Knowing what resources are needed to make the conversation better is key.
  • What - what are you going to say? How are you going to say it? What tone are you going to use? Creating an outline of what to say and how to progress in the discussion can help you to relax and make a better discussion.

Practice - take some time to practice what you are going to say. Practice allows you to get comfortable with your planned material. It also helps you stay on track during the conversation. 

Anticipate - anticipate how your child is going to react. Try to determine what questions he/she will have and prepare answers for those questions. This will also prepare you for any questions you might not have thought of.

Following the steps above will help me discuss the issues that need discussing in a successful way. The plan is to have the discussions lead to a feeling akin to this.

What about you? What do you do to get ready for those "difficult" discussions?

Thursday, April 6, 2017

It's That Time of Year Again!

Every year around this time I start receiving phone calls about annual IEP meetings for my three children with special needs.

An IEP is an Individualized Educational Plan.  Children who  have a disability (as identified by the law) can have an IEP.  This ensures that each disabled child has special education services and specialized instruction.

During these meetings we discuss if a child still qualifies for special education services, how many hours they qualify for, how much instruction, what type, etc, etc.  I am grateful for these services which help each child with a disability receive the type of education he or she needs.  I have 3 children who qualify, hence I have at least 3 IEP meetings per year and often more.

This year is Grace's MET year.   A MET is a Multidisciplinary Evaluation Team consisting of 2 or more people who evaluate a student to see if they qualify for a disability.  This team meets with students and performs tests such as Wechsler Intelligence Scale for Children (WISC-V);  Woodcock Johnson Test of Achievement (WJ); the Adaptive Behavior Assessment System; and so on.

Sometimes the list of tests is overwhelming and intimidating.  And my poor Grace will undergo hours of tests which can be quite tiring and tedious.

So yes, I have a love/hate relationship with IEP's and MET's.

IEP's can be wonderful places where great ideas are discussed on how to help each child.  Sometimes, however, they can be discussion about laws, definitions, and limitations laced with legal terms and frustrated tempers.

In one of my first IEP meetings I did something that helped focus the meeting and I have tried to do it at each successive meeting.

Before we began discussing Levi in this IEP meeting, I presented the educators with a picture of him.

I then began discussing all the good things I loved about Levi: how he loved animals. How he laughed at Sponge Bob.  How he swam like a fish and loved chicken nuggets with barbecue sauce.  I wanted each educator in that room to see Levi as a person, a child with real dreams, wishes, hopes and desires.

Later the school psychologist told me that meeting changed the way she conducted IEPs. She made an effort after that to start with the strengths and personality of the child.

Sometimes we get so caught up in what the child CANNOT do that we forget what the child CAN do.  We are so busy discussing difficult behavior issues that we forget to see unique and fun personality traits.  We see the disability and forget to see the abilities.

So in three weeks when I go to discuss Grace, I will bring a picture of her.  And I will come prepared with all the things I love about Grace that I can share with the educators who will be part of her IEP. We might still disagree about a few things, but this will help us keep in mind the child behind the diagnosis and the real reason we are all here.

I would love to hear how you come prepared for IEP meetings and what you do to keep focused.

Tuesday, April 4, 2017

Grandma's Footstool

My Grandma was an amazing woman who taught me many, many things. She came from a rural town in Utah and married a farm boy named Boyd who would one day become a Colonel in the Air Force.

Boyd and Janice White, one great looking couple

Together they traveled the world and raised 4 wonderful children.  Family was everything to my Grandma.  She organized family reunions, hosted cousin weeks, called, sent gifts for every holiday and truly spent time getting to know each one of her 18 grandchildren.

My sister and I were visiting one day when she was sick.  She had experienced a series of heart attacks and other problems and needed rest.  We loved to go visit and clean up her home a bit (not that it needed much), eat lunch with her and spend an hour or two talking.  It gave me great pleasure to serve her since she had spent her life serving and loving her family.  While we were there on one visit she was resting her feet on a beautiful footstool we had seen before.  She asked us if she had ever told us the story of the footstool.  

I'll let my sister Chris tell the story in the words she wrote after Grandma was gone.

"Grandma had a neighbor that had a small step stool.  She would carry it outside to do yard work and leave it out in the rain.  Grandma, having grown up poor, asked the woman one day why she took such a nice foot stool and used it for such dirty work.  The neighbor made some off hand comment about 'this old thing.'  She remarked that she didn't really think it was that great of a stool.

In typical Grandma fashion, she could see the beauty in something that others could not see. She boldly asked the neighbor is she could have the stool.  The neighbor gave the stool to her, still unable to see the beauty in it.  

Grandma sanded, stained, and hand stitched a new cover for that old stool.  It is now a beautiful piece of furniture in her home."

Grandma's Footstool

Chris continues: "How many of us grand kids became like that footstool?  I know that I thought no one but Grandma could see the beauty hidden beneath my dirty exterior.  During those summer weeks with grandma, I became that step stool.  She sanded me off where I was a little rough, put a new shine on me, and hand stitched my exterior in confidence and love.  Then she set me out before the world to shine. I knew that my parents loved me no matter what I was.  I knew my Grandma loved me because of what I was."

My sister Chris and I with our grandparents Janice and Boyd

Grandma's gift of unconditional love was priceless.  Additionally, she knew our potential and did all she could to help us achieve it.  What a gift this type of love is.  With our children, special needs or typical, they must feel unconditionally loved.  However, we must also help them see their potential because we see it. 

Grandma's stool now lives in my home for 12 months, then travels to my sister's home for 12 months.  This beautiful stool reminds us to show great love and acceptance to our own children, while also helping them achieve their potential.  All children need the type of love my Grandma could give.  I hope I have learned this lesson well enough to pass it on to my own children.