Our Homeschool Journey: Sensory Friendly School Room

Our Special Needs Journey:Part 6 - This IS Our Normal - A Week in the Life of 3 Children with Autism

It occurs to me as I sit here typing, I don't know who I am writing this to - God, myself, anyone who will lend an ear and give a virtual hug - or WHY - to vent, for advice, a sounding board, a prayer? Regardless, I need to take the time, in the midst of the busyness of life, to sit - and to think. This post is ridiculously long but going through one week of our life with you explains SO MUCH.

I often feel so overwhelmed by all there is to be done and by all the thoughts swirling around in my head that I fail to accomplish anything.  I have days where I sit in "my" chair in the living room and can't figure out where to begin.  Pay bills? Work on the taxes? My Bible Study? Schoolwork with the kids? Balance the bank account for a volunteer organization I'm Treasurer for? Create invites for Bruce's party? Fold laundry? Fill out paperwork for Julia's doctor appointment next week? By the time I determine the most pertinent and time sensitive project, it's 2 am. (I was interrupted a lot, of course.)

Household Scheduling and Time Management

With 2 adults, 4 kids, and 7 pets our schedules get kinda hectic.  Even our routine tasks can be forgotten (did I do that today - or was it yesterday??) - especially with ADHD kids.  I'm a Type-A listmaker - and I live by my calendar (calendars plural really - I'm obsessed).

And while you may stop by my house on any given day and find a tornado has come through it - we LIVE in our living room.  School, games, eating, all of it.  The laundry doesn't get folded daily, but it IS washed each day, ensuring clean clothes for all (perhaps fished out of the basket though). The turtle tank gets cleaned, dishes washed, spiderwebs vacuumed up. You wouldn't know it by the clutter everywhere!

In an effort to keep track of all of our therapies, doctor visits, and activities I have several calendars.  My main one is paper - July to June -this is my baby.  Always up to date, always accurate.  Each month I create the family wall calendar:

I work hard to keep this wet-erase (do NOT use dry erase or someone WILL accidentally - or purposely- erase it) board up to date.

Everyone wants to know what's expected of them on any given day.  My husband needs to know if he's responsible for anything besides work & sleep (like driving a kid to an appointment b/c we are double booked), since he works 3rd shift and sometimes he has a commitment during the day - his bedtime.  The girls have autism/PPDNOS and will have a very hard time if they do not know what's going on each day - in advance.  No fly-by-the-seat-of-our-pants here.

So I have to spend the extra time to complete this weekly calendar as well.  It is 10 minutes well spent each Sunday night though! Each family member has their own line - mine is always the most full, I'm a bit overbooked.  Our meals are listed on the bottom since the calendar I bought came with a space for that.

I meal plan for multiple reasons.  First, I'm a control freak and it is something I have control over. It ensures we have dinner - not fast food or pricey take out or other unhealthy options, like a week straight of frozen pizza.  Mostly because it saves us time and money.  I can plan for 3 weeks and prep most of the food in advance.  I shop using sales and coupons.  Every once in awhile I snag a few things that aren't on my menu that are a great deal.  Then in the next 3 week rotation I use up those items.  We have pantry shelves in the laundry room, a small freezer, and an extra fridge/freezer in the garage.  This is how I can prepare so much in advance to survive the busy week nights.

I handwrite a lot b/c I have a nursing baby and it's easier to write with one hand than type.  I also make a list of lunch ideas - the girls usually make their own lunch while I am getting Dean fed and ready for preschool.  I pretty much don't eat or snack here and there. Life of a busy mom.

The MOST important element to keeping the kids on task and helping them manage their time is a visual reminder.  We have lists - the concept is to earn a reward for completing chores and routine tasks.  The chore chart is an Excel spreadsheet I made for each kid with a list of things they get paid a dime for (this is what our family has decided on).  They are paid weekly based on tasks they have checked off.

I am pretty frustrated that I can't figure out how to upload documents to this blog, because I'd love to share the basic chart with you and you can edit for your family.  Maybe I'll figure it out someday...

This is the dry-erase boards I made.  I simply wrote up their daily routines in a Word doc and laminated them.  They have the opportunity to earn screen time (20 minutes per ticket,  up to 5 tickets a day earned) based on their routines.  Regardless of whether they have tickets going into a day they can NOT redeem unless the morning portion is completed.  This is how I have gotten them to take their medicine. (NOT AN EASY TASK!)

When a child has brushed her teeth, she checks the box.  If the whole section (morning, afternoon, evening) is completed, a ticket is earned.  We have physical tickets that are earned and redeemed to keep track.  We found that screen time is their sweet spot -- even my 4 year old responds to this (he earns tickets more easily and they are for 5 minutes).

Now, no excuses for not keeping the laundry going or forgetting to shower! :) Simply wipe off at the end of the day and begin anew each morning.

There is also a weekly chore list - like 3 days a week we need to scoop up the lawn after the dog, once a week is the turtle tank, the stairs are vacuumed every other Saturday, so on.  I don't have a photo - this is a Word doc on my computer. Anyone know how to get those docs onto Blogger??

We have lists and guidelines for homeschooling as well, but I fill in my teacher's guide each day, AFTER something is completed.  I used to set a schedule for each day and it would become stressful to always follow this by the book.  One place the girls are flexible? Learning.

We may play a game instead of go for a walk.  Yesterday I planned to continue our study of the moon missions but Julia asked why leaves change color.  So instead we researched that and did an experiment for an hour.  I love our newfound freedom of throwing out the strict schedules and following our interests and hearts.

Glitter Bottles

I originally found something similar to this on Pinterest used as Time Out Timers.  I thought they would be great for my kiddos to use for "Calm Down Time" as we call it.  Having 3 special needs kids (ASD, ADHD, PPDNOS, ODD, SPD) there is often a struggle with transitioning, sensory overload, and the inability to manage their frustrations.

For my kiddos sometimes a short break to compile themselves, get ahold of their emotions, and essentially calm down and transition really helps.  They LOVED the idea on this blog so we adapted a bit.  They each chose a color of glitter glue.  Fill a clean, empty bottle 2/3 with warm water, the entire bottle of glitter glue, and a Tablespoon of white or clear glitter.  I didn't have any glycerin on hand but I would suspect that would be a great addition.

Make sure some of the glue is spread around the opening of the bottle so that when the cap is placed on and the glue dries it stays shut! I don't want to clean up THAT mess!  Simply shake.

 This is the bottles "calm" with white glitter on the bottom, colored glitter glue on that, and water (tinted by the glue) on top.  Shake and wait for it to settle.  It takes a good 10 minutes, so "time out" is by no means mandatory.  The kid sits in the same place they were - usually on the couch in the middle of our homeschool day - with the bottle.  Focus on the bottle and not on what made them frustrated.

This is what they look like "all shook up."   Yes, that's my kitty photo bombing.  She wouldn't move. The bottles are beautiful and all the kids (12, 9, 4, 6 months) love playing with them.  They used name stickers to put their names on them.  I suggested more stickers but they said it would cover up the view. :)  

We discovered that Baby Bruce LOVED these bottles most of all.  Seriously, he's obsessed - it's like crack for babies.  Shake, roll, chew on, totally entertained!

Praying About My Parenting

Today I feel overwhelmed as I sit to write this. Not by the usual things that exhaust me and cause stress.  But rather by how much there is to pray for! The people I know needing prayer, as well as those things in my own life, the sheer volume is overwhelming.  I can, of course, pray for all these things, but that is the very reason my prayer life lacks depth lately - too much.

Overwhelming my head with too many thoughts prevents me from really connecting, really crying out to the Lord. It also makes it so much harder to see the fruits of prayer. This 30 minutes, after the kids are in bed and Bruce is sleeping on my lap and I am free of distractions, is focused on going deeper into just one thing.

My husband called earlier on his break and asked how the day was going.  "Just ignore Dean screaming in the background" I replied sheepishly, "I won't let him play on the Nook till he cleans up his toys, so he's mad." I'm embarrassed. Here my husband is, working hard, on very little sleep, without complaint. Then here I am, unable to "keep the kids under control (my words, not his)."

I do not envy my husband's position as the head of our home. I do not want the burden of providing financially for the 6 of us and I lack the emotional strength to be the spiritual head of our family.  It occurs to me that while he works, I have been saddled with the task of raising our children.  While this is a tremendous blessing and often a lot of fun (even on the worst day, it is more enjoyable than any other calling I could be given, and more rewarding), it is also a bit terrifying.

I am responsible, in large part, for the people these children someday become! This is not a nature versus nurture debate, rather a realization that I play a large role in who they will be as adults. My husband is a good man, a faithful provider who adores his children and spends as much time with them as he is able, but the bulk of the child rearing is up to me.  This is my work, my job. The overwhelm I felt a few minutes ago has got nothing on what I'm feeling now!

It is clear that I must focus tonight's prayers on God  equipping me for this amazing calling. We started school today and since educating my children is part of my parenting responsibilities (as we have felt called to home school) I better pray about that while I'm at it. I am reminded of King Solomon in 1 Kings 3:

5 One night while Solomon was in Gibeon, the Lord God appeared to him in a dream and said, “Solomon, ask for anything you want, and I will give it to you.”

6 Solomon answered:

My father David, your servant, was honest and did what you commanded. You were always loyal to him, and you gave him a son who is now king. 7 Lord God, I’m your servant, and you’ve made me king in my father’s place. But I’m very young and know so little about being a leader. 8 And now I must rule your chosen people, even though there are too many of them to count.

9 Please make me wise and teach me the difference between right and wrong. Then I will know how to rule your people. If you don’t, there is no way I could rule this great nation of yours.

 I too need wisdom to run this household and raise these children.  I need the wisdom of a king! Lord, would you equip me with patience and wisdom? Give me empathy and tenderness when I discipline, that I may train them up in the way they should go without tearing them down, as they are still so fragile. Please help me not to yell, to keep calm and be consistent.  That I would respond appropriately and quickly. Give me guidance to know how to handle any challenge that comes my way.

Would you give me an extra dose of adrenaline to make it through the day (not just tomorrow but each and every day)? Strength and energy are often lacking, and my parenting is sub par when I am tired. Lord, I ask for your help sticking to our routines and schedules, free me from distractions. Give me the self control to keep my computer off and not be tempted to check emails when it is "their time." Help me have the energy to take the kids on a walk, as they beg me to do, rather than telling them I'm just too wiped out.

Allow me to be an example in my words and actions - that they see me reading your Word and praying, being kind to others, honest, and hard-working. I pray that I could emulate all the things I want them to be! Guard my tongue from unkind words or yelling. Let them see me putting my words into action and leading this home in the role as wife and mother as You have called me.

Equip me for their special needs and learning styles. Give me creativity, wisdom, and patience as I teach. Give us the ability to overcome the hurdles that come with learning disabilities and ADHD and ASD.  Do not allow any of us to give up but rather give us strength to persevere when we struggle. Enable me to stay on track each day - but not so rigidly tied to a schedule I am inflexible when they need flexibility or change.

Let me be present with them, where they are at, and not distracted by my miles-long to-do lists. Let me show them they are precious to me and I care for them immensely.  Help me, Lord, to pause and display love, taking the time to hug and snuggle and have quality time with each one. 

Help me keep them safe. Give me a keen eye and swift reaction when danger is near. These children are so delicate, and there is so many dangers and illnesses out there; would you protect them and keep them 

safe? Watch over us when I'm driving or supervising a park playdate.

And while it is important to foster independence and responsibility, please help me balance that fairly. That I do not overburden them with chores or use harsh words when gentle correction will do. Give me wisdom to know what builds character and when it is time to let them be little.

I praise you, Lord, that I can come to you with these requests.  The responsibility of parenting is great and I cannot do it on my own.  Enable and equip me for all that you have called me to do.  Know, dear God, that I am grateful that you have blessed me with this great responsibility!

Our Special Needs Journey: Part 3 - I'm Not a Supermom, but I do Have a Super God

I'm having a Dear Diary moment.  I am often asked "How do you do it all?"  and I don't really have an answer, other than by the grace of God.  [Hey, so later I learned I'm Bi-polar II and don't sleep for days getting projects done.  So I guess the answer is "because I have a mental disorder."  :)]

I love being creative, making people happy, serving others, and blessing them.  I enjoy being busy, I thrive on activity, and I can't single-task, I MUST be multi-tasking at all times.  I may be trying to "earn" my place - to "deserve" to exist in this world.  That's a psychological discussion for another day.

It's a curse, really.  Because I am so busy moving that I am not pausing to think.  I don't feel sorry for myself often, but there are those moments, when it seems like life is working against you each corner you turn. So here's my secret truth: Sometimes I cry.

I CAN'T do it all. It's in these moments I come crashing to my knees and cry out to the Lord for the supernatural ability to make it through the day.  I can't be the only one that feels totally unequipped for their calling, right? Lord, would you please equip me? I need strength, patience, and energy. I'm just so tired.

Having children with special needs is usually not something I am upset about - I don't often have "why me?" moments.  The better question would be "Why NOT me?" Today, my heart is broken.

Julia had her re-eval yesterday and the parent meeting was today to discuss the results.  She had briefly been on the highest functioning end of the Autism Spectrum, as she has speech struggles and that cannot align with an Asperger's Diagnosis.  And oh, how much progress we've made over the years!

The progress was obvious in her testing - hooray! But she is solidly back on the Spectrum, still high-functioning but with much more autism-related struggles than I realized.  What this means is that she struggles with everything autistic children struggle with, but at a higher functioning level of the spectrum - she is verbal, toilet-trained, etc.

So while we have overcome many sensory issues (for example she will now wear certain socks and can fall asleep without a heavy blanket wrapped around her like a burrito - though she still uses the blanket to sleep, just not having to have it), there are now new ones to address.

With growing older comes new challenges: bras (a brand new sensory issue), puberty (hair is "itchy" and she's uncomfortable with it all day), and hygiene (brushing her hair is like pulling teeth and she cannot grasp why she needs to shower and wash & floss).  The doctor is having her return to OT specifically to address these new issues.

And while Julia is a very sweet and fun girl, she is emotionally/cognitively far behind her peers.  I held her back and repeated 5th grade hoping she would be more in alignment socially with her peers - not because I WANT her to crush on Justin Beiber or start rolling her eyes, but because I want her to have close friends she can relate to. 

 This goofy girl is simply amazing, delightful, filled with sunshine, and such a wonderful big sister!

Today I found out her social-emotional level is that of a 6-8 year old.  She's 12.  The doctor reassured me I have done a good job thus far, but there are now new issues beyond my abilities.  We've pushed past the basic sensory issues that made going out of the house impossible.  We've made huge progress academically and really built up her confidence in herself in this area.  We've found where and how she learns best and how to help her learn in the areas that challenge her.

Where I am falling short? The new challenges that come with growing up -- transitioning, getting a job, spending money, self-care, SATs, college, driving, dating.  Ugh. I just don't know what to do!! Social skills therapy is not covered by insurance, these classes cost anywhere from 2000-6000 out of pocket for 6-8 weeks - and I have at least TWO needing this therapy. 

My heart breaks for my child.  I hate seeing her struggle - I hate that she lacks true friendships.  I want other girls to WANT to play with her.  Not just put up with her on occasion because they feel sorry for her, but LOVE spending time with her since she is just so awesome to be with.  Other kids don't get her - and she doesn't understand them. 

The crazy thing is I don't think it bothers her much to not fully "fit in." She loves spending time with younger children and adults. She seems happy, content, connected.

Part of me wishes I had the kid that was the bully, not the ones who are bullied.  It is so hard to see your child struggle so greatly, be so out of sync with the rest of the world, and to be teased.  Her blessing is her curse.  She is, fortunately, high functioning (as are my other 2 kids), which is great news.  With help she will be able to go to college, get a job, get married, be a mom, and lead a very typical life.

This is also part of the struggle - her "normalcy" and ability to function on a fairly typical level is what causes judgment from peers.  The world understands that someone in a wheelchair has certain difficulties.  Down Syndrome is a pretty obvious thing to spot. Several kids with special needs are able to elicit empathy and understanding from the general public. Autism is not a specific "look" or key "behavior."

Not so much so when you appear "normal/typical."  Instead, she is "weird" and kids "just don't really like her." Her social skills have improved greatly but are a long way from being at the same level as her peers.  People in stores and other public places stare, sigh, roll their eyes, whisper, or flat out say something rude. 

As a hyper-emotional, overly-sensitive person myself, this hurts me personally.  Praise the Lord, Julia is oblivious.  She thinks every person she has ever encountered is her dear, close friend! I want to be so trusting and accepting of the world as she is!

So, Heavenly Father, would you equip me today (and every day)?  To be consistent, show love, build up my children, teach them all they need to know, and to handle their unique needs?

I was at Pacer Center today for an intro to a special needs science camp Julia will be attending next week.  It occurred to me how very blessed I am to have the children I do.  Life could be so much more challenging! My kids have it easier than many, many others! Yet, as I held a baby and chased after an energetic 4 year old while the girls tried to meet the other campers, I felt tired.

Lord, I am infinitely blessed, far beyond what I deserve.  But I am tired.  Really, really tired. Exhausted. Overwhelmed.  Would you show me what things I can let go of? Would you expand my time and give me supernatural energy? Stand beside us in every step of this journey?  Will you provide for our financial needs - especially regarding the costs of therapies and meds?

Because, I really don't have a cape.  I'm not a superhero. I merely serve a super God and live for His purposes and to His glory.

Someone please validate me - tell me you relate. You feel inadequate too.  It would help!

Our Special Needs Journey: Part 1 - Life with Special Needs Kiddos

I really, really, really love my life.  I simply could not be more blessed (okay, a vacation and new roof would be nice).  But sometimes I gotta call bullshit. I know God has a purpose in every circumstance, and most days I cling to that proudly.  But sometimes (like when my ODD child kicks a hole in a door, and I can't figure out why) I cry out "really?! Seriously?!"

My hubby is very healthy but injured his back at work a few years back, had surgery, and still struggles with pain.  And with working 3rd shift he never sleeps appropriately.

I struggle with Endometriosis, Crohn's/IBD/IBS, gallstones, back pain (had surgery a couple years ago), horrid pregnancies w/ a plethora of complications (and multiple losses), and seasonal allergies.

My oldest (12) has Aspergers, ADHD, anxiety, speech disorder, dyslexia, dysgraphia, and sensory processing disorder.  We cannot determine why she has not gained pounds or inches in over 3 years, and continue to visit expensive specialists and take tons of tests.  She has come so far in the 6 years since initially diagnosed.  I am proud of her progress and of the beautiful young woman she has become. She wants to be helpful, loves the Lord, and is such a kind caretaker (kids, animals, plants).  But messy, weepy, lies frequently, can't stay on task, doesn't remember what was just said, etc.  School is hard. Chores are hard. Making and keeping friends is very difficult.

My younger girl (9) is high functioning autism, ADHD, Oppositional Defiant, Dyslexic, has sleep apnea, precocious puberty (yes, she got her period at 5 and has acne already), sensory processing disorder, and asthma.  She is unpredictable, moody, and often angry.  She struggles with expressing her anger in a healthy manner and often becomes violent.  Homeschooling is difficult, to say the least.  I spend a fortune on nighttime pullups since we cannot stop the bedwetting.  But what a sweet spirit she has.  She memorizes scripture and no one makes Baby Bruce laugh like she does!

My oldest boy (4) is a precocious, entertaining, and energetic firecracker.  He has esophillic esophogitus, meaning his throat bleeds.  He has struggled to gain weight since 5 months old and did not hit the 1st percentile on the charts until he was 3 years old.  He has a heart defect called bilateral valve defect - he will not need surgery till he is an adult but his murmur must be monitored.  He goes to an amazing special ed preschool for his developmental delays.  He has speech, social, and motor issues but you'd never know, he has come so far and is one smart cookie.  He will likely "fall off the spectrum" in a few years.  His sensory processing disorder is more severe than his sisters' though.

My precious miracle baby is just 5 months.  He is such a blessing and very healthy.  However he already has a nebulizer for his wheezing and breathing issues and is allergic to dairy. 

I KNOW that where God has called me he will equip me, but there are days I feel so inadequate.  My husband and I are convinced that God has called us to homeschooling and we are the best teachers, but that does not make it easy.  The hardest part may be that I care what others think of me.  My children don't look disabled, making it so easy for others to judge us.

It's expensive and exhausting. I wake up daily needing to cry out to God for strength and patience.  I pray He will equip me and use me for His purposes in this.

Why do I tell you all of this? Because I don't belong to a support group. Because I am home with kids all day, unable to tell another adult about my challenges and my victories.  This is virtual therapy, and that is all I can afford right now! :)