Sand, Saltines and Consequences

The other day I walked into Josh's room to find that he had taken an entire sleeve of saltine crackers and had crumbled them up into fine, sand-like granules all over the floor of his room.  Playing with sand has always been a favorite activity for Josh.  Particularly, he loves to watch sand falling through his fingers.   He could sit for hours lifting a handful of sand up to eye level, watching it fall, then laughing like crazy. It must be wonderful and beautiful in a way that my non-autistic brain just can't understand.  I let him do it at playgrounds and at the beach because it makes him so happy and it keeps him busy while his sisters are running around.

While I'm glad for Josh's ingenuity in recreating this beach-like scenario in his own bedroom, I have to admit that I was livid when I found the cracker crumbs covering the floor in his bedroom and his bed.  The moment I walked into his room, Josh must have known that I would be upset.  Before I could say anything, he echoed something I have said in exasperation many times, "Ohhh, sweetie!" (except with a more loving, compassionate tone than what was about to come out of my mouth).

Now, usually, when I find a shocking mess in Josh's room (in the past it was poo on the walls or coffee poured into his desk drawers) I usually get him out of the way and use my massively pumping adrenaline to power me through a vicious, dragon-mama cleaning process.  Miraculously, this time I had the presence of mind to make my son deal with the consequences of what he had chosen to do.

I took a deep breath and said, "Josh, you need to clean this up."

"No" my almost-adolescent said to me.

"Yes, Josh.  You need to vacuum."

Josh sat there silently, not looking at me but clearly waiting to see if I would really make him face the consequences of his mess.  He has never used the vacuum before because he has had a strong negative reaction to the sound of the vacuum.  Along with lawn mowers, blenders and crying babies, vacuums have always been his auditory kryptonite.

I took his hand and walked him to the garage.  I pointed to the hand held mini-vac.  He knew exactly what this meant.

After he tried the mini-vac on his carpet (which didn't work) I made Josh go get the regular big vacuum.  I'm proud to say that we cleaned that room up without my ever touching an implement of cleaning.  I just gave verbal prompts or pointed and waited for him to figure it out.  It took a loooooooooong time but he did it!

Through this experience, I realized the following things:

1)     I still do way more FOR Josh than I need to.  I do things reactively, just to get them done when I should be letting/ making Josh do things for himself.  I need to curtail my motherly impulse to do things for my child and make him learn to do it by himself.

2)     All children (even kids with special needs) need to learn that there are consequences for the messes that they make.  If we don't give them some sort of immediate consequence that they understand, they will keep making those messes.  Since Josh is going to be living with me for a lot longer than when he turns 18, I am very motivated to train him to stop making messes like this.

3)     Josh can accomplish things that I often don't imagine him being able to do.  I had no idea until this day that he could handle the auditory challenge of the vacuum noise.  I wouldn't have guessed that he could wind the cord back up onto the back of our vacuum.  Josh can figure out how to get the vacuum back to the garage and he totally knows where it goes.  I could have gone a long time without realizing these things because I always do the vacuuming in our house.

So now, there is one more chore that I can get help with around our house.  A stumbling block has been turned into a stepping stone to something new!

How Josh Helped us to Interpret the Bible

Last week our family went for our annual trip to a friend's cabin in the mountains. Together with another family of five, we spent the week laying around, cooking good food, exploring streams and having daily group morning devotional times (among many other wonderful activities).

We've known this family for decades and have vacationed with them for the past five years in a row.  I really appreciate that the three kids of this other family are all very tenderhearted toward Josh and try to help him out whenever they can.  One evening we had a discussion about what it's been like for them to grow up with Josh as a "cousin" and they had insightful things to say about how being in relationship with Josh has made them more sensitive to others, especially those who have special needs.

One morning, the mom of the other family led us in an inductive Bible discussion of Ephesians 4:26-32.  Our kids range from age 7-15 and we have just barely become a group that could have a brief discussion of the Bible together.  It was a bold decision to try to have this kind of devotional time with this crew, especially with my wiggly troupe.  It went surprisingly well.

The part in the middle of the section goes like this:

"Let no evil talk come out of your mouths, but only what is useful for building up, as there is need, so that your words may give grace to those who hear.  And do not grieve the Holy Spirit of God, with which you were marked with a seal for the day of redemption"

One of the kids asked, "What does it mean to grieve the Holy Spirit?"  After we defined what it means to "grieve", we wrestled with the question of why it might make God sad when we don't treat each other very well.  Why does He care?  What might that feel like to God?

Finally, my husband came up with an illustration that made a big impact on everyone.  "What if someone came up to Josh in front of you and said, 'Shut up, you stupid retard' ?  How would that make you feel?"

Alex barely got his question out of his mouth before all of the children (except Josh, who was listening to music on headphones) gasped with furrow-browed, open-mouthed, passionate indignation. Hurt and a sense of injustice flashed on each young face.

"Why would anyone say that?!"

"I would want to beat them up."

"That would make me really, really sad and mad."

We had had a conversation earlier in the week about the "r-word" and about how it's inappropriate but that some people use it in reference to kids like Josh.  We were all aware of how hurtful words like that are.  (Actually, we had an interaction similar to the one Alex described when we were at the library the other day.)

Alex explained that how we felt was sort of like how God feels when we treat each other badly and refuse to reconcile with one another.  It grieves Him.  Just like we all want to protect Josh and make sure that he gets treated well, God feels that way about every one of us.

I was struck by the emotional and theological richness of the moment.  Because we all have relationship with Josh, a vulnerable person with many, many needs, we have a deeper understanding of what humanity is like before God and about how God feels about the brokenness of human relationships.

The emotional impact of the illustration made the truth of the scripture sink in.  My girls have mentioned this scripture to me several times since we've returned home, noting that they want to be better at not being angry at each other because they don't want to grieve God.  They asked that I print it out so they could put it up on the walls next to their beds.

Even though Josh was listening to music on Pandora on my iphone during the whole devotional time that morning,  I treasure how he was (and is) involved in expanding our understanding of God just by being who he is.

The Purpose of a Flower

“In many ways we are like the busy man who walks up to a precious flower and says, ‘What for God’s sake are you doing here?  Can’t you get busy some way?” and then finds himself unable to understand the flower’s response:  “I’m sorry, sir, but I am just here to be beautiful.”    

                                                                        Henri J.M. Nouwen    Creative Ministry

When my son is being slow I find myself so easily frustrated.  Sometimes it takes him forever to get out of the car or to decide that he’s done at the toilet.  The busy mom in me, who is always aware of the millions of other things that I need to get done that minute, is tempted to blurt out, “Josh, why can’t you go faster!?”

Life with Josh is never expeditiously productive.  Josh doesn’t think very quickly.  His body doesn’t decide to do things very easily.  Communication with Josh is like being at a coffee shop with intermittent wi-fi. 

Usually, at the zenith of my impatience, I find that God gets my attention.  He often plants a question in my mind like, “Why do you need Josh to be more effective and efficient?”   I am guessing that it has more to do with how I feel about myself and about my life than a true assessment of what my son is able to do in that moment.

I also begin to realize that my son was not created to be fast.  Josh will never be a resident in the realm of high productivity or immediate transformation.  

Josh is here on this planet to be a parable about a different way.  His purpose is to make people slow down, even to stop for a bit.  His impact will be on those who are willing to pause and rethink our assumptions about how things have to be.

The other day Josh walked out of the house loudly munching on a zucchini like it was an apple.  I had a knee-jerk response to rebuke him.  “No, Josh, we don’t eat uncooked zucchinis!”

One of my girls asked, “Why not, Mom?”

You know what?  I did not have an answer.  Yes, it was unwashed but that isn’t the biggest deal in the world.  Why can’t you eat a raw zucchini if you want to?  I have eaten them diced into salads before.  There is nothing inherent in a zucchini that necessitates cooking.  If my child is happy to eat a vegetable, without my forcing him to, why would I stop him?

“Well . . .  go ahead, Josh.” 

I put my unemptied grocery bag and armful of jackets down and sat on the bench in front of my house and watched him eat the whole zucchini with great gusto like it was a sweet, juicy peach.  Upon finishing, stems and all, he looked very satisfied and amused.  He started clapping and humming, choosing this moment to have a little celebration.  Watching Josh quieted my spirit.  I smiled, knowing that Josh had been placed in my life just to be beautiful. 

Dental Grace

Our dentist is the Rolls Royce of pediatric dentists.  He is a professor at Stanford University Medical Center.  His private practice, which has a waiting list a mile long, specializes in unique and difficult cases of pediatric dentistry.  His waiting room is filled with children with special needs and their stressed out parents.  Dr. Adams is very dignified looking African American man in his sixties.  I think that he’s had an extremely successful career and he drives a very expensive sports car.  He always wears a bow tie with some sort of child friendly print but his manner is all business.  His staff speak in very low and respectful tones around him.

Like many autistic children and children in general, my son does not do well with people poking sharp instruments into his mouth.  He had a stint of doing well at his cleaning and check up appointments for a couple of years but after several years of completely unsuccessful appointments we elected to try sedated dentistry at our local children’s hospital.  The plan was to do a cleaning, X-rays, sealants, and a thorough check up, all while Josh was under anesthesia.  Because of Josh’s endocrine issues, a team of anesthesiologists and endocrinologists were also present to make sure that his hormone levels were managed while he was under.  Like most medical processes with Josh, it was quite a production. 

The morning, which began swimmingly, came to a grinding halt when Dr. Adams met with me after the procedure to tell me how things went. 

“Well, we found some cavities,”  he began.

“What? “ I was very surprised, as Josh had never had cavities in his life.  “How many?”

“Twenty.”

“What?!!!”  

My face must have immediately betrayed my key emotions – shock, anxiety and shame.  I’ve done a bad, bad job with my beautiful son’s teeth.  I thought of all of those times that I didn’t want to fight with Josh to floss so I didn’t.  I wondered if Josh would ever learn to brush on his own.  I imagined Josh losing all of his teeth and having to get false teeth, which a thousand specialists would have to be involved in.  They would whisper to each other, “His mother didn’t do a very good job managing his teeth.  She’s a bad, bad mom, you know.”

I expected that Dr. Adams would respond with some firm encouragement about better dental practices at home.  What parent doesn’t dread what the dentist will say when their child has failed the cavity test? 

But Dr. Adams surprised me with his kindness and grace. 

“You know, my sister has cerebral palsy,”  he shared.  “It’s hard to brush her teeth because she doesn’t have the muscle tone to keep her mouth open.  My parents and I really struggled with it her whole life.  It can be really hard with kids like these.  Also, Josh has his cavities primarily because he has exceptionally deep grooves in the tops of his teeth.  This is not your fault.”

What do you know?  Our dentist gets it.  And that ray of grace was enough for me to pull myself together and be led into the post op room where my son groggily opened his eyes and smiled at me.  

What to Do When You are Anxious about Your Child

Recently, I went to a seminar on the topic of "The Future of Housing for Autistic Adults".  It was free and being held about five minutes from my house so I thought, why not?  This could be helpful information just to keep in mind as I think about my eleven year old son's long term future and I've got the mental bandwidth today.  Oh, how wrong I was.

As soon as I walked into the auditorium, I realized that I had made a mistake in coming with so little emotional preparation. The anxiety covered the room like a thick layer of peanut butter.  Parents of adult individuals with disabilities had that familiar look of exhaustion and desperation.  The few people that I tried to interact with at the refreshments table seemed to be carrying a thousand pound burden with them.  As the panel began to discuss, things went from bad to worse as the panel members (governmental leaders and activists) ping ponged in their presentation from defensiveness to bitter anger about the current housing situation for adults with developmental disabilities.

I tried to concentrate on the information that I was gleaning from the handouts about the history of housing for the developmentally disabled in our state and understanding the complex system of power and bureaucratic authority in this realm.  However, I couldn't block out the disturbing and disrespectful ways that the people on the stage were interacting with one another.  I found myself upset and, more than anything, anxious.  What does this mean about Josh's future when I can no longer take care of him?  Am I going to have to deal with a broken and dysfunctional governmental system that won't help me to meet his needs?  Am I going to be able to have any service providers that I can trust?  The anxious thoughts swirled around in my head until I finally decided that I needed to get the heck out of there, spilling coffee on my neighbor as I scurried out of my row.

In my almost 12 years of being a mom, I have observed that it is very natural to struggle with anxiety now and then about things having to do with our children.  After all, we have responsibility for these creatures and, whether your child has a disability or not, they all have complex needs and challenges.  The road ahead is fraught with danger and threats.  Our children have weaknesses in their bodies, minds and character.  We worry about what this might mean for them in their future.  To some degree, anxiety causes us to engage, to think ahead and to fuel us to solve problems.  Some might say that anxiety is a blessing.

Yet there are times when we see anxiety for what it is, a way that we say to ourselves, "This dark scenario that I have for the future is too scary,  too big, too bad for anyone to handle, including God."  At the root of anxiety is a belief that God's love for us will not be powerful enough to give us a good future and that we need to be in control.  Ultimately, unchecked anxiety will not be a useful tool but it will rule over us, crushing our peace, joy, and trust for God and other people.  Anxiety feeds on itself and on our anxious behaviors.  It will make  our minds unable to rest, our souls unable to worship freely and our bodies unable to function properly.

Therefore, as a veteran in the battle against anxiety, I would like to share with you some wisdom about how to not let anxiety rule your life.  When you realize that you are gripped by a dark scenario about your (or your child's) future that does not include the hope of God, I suggest the following:

1.     Talk to someone.  Tell someone exactly what is making you anxious.   Don't rehearse it over and over.  Don't chew on it like cud.  Just get it out of the warm, moist environment of your own head and let the antiseptic power of fresh air and sunlight start to do it's job on your anxiety.  If you don't have someone to talk to, journal it out.  Just get it out.

2.     Pray.  It doesn't have to be complicated.  I like Anne Lamott's suggested prayer, "Help!"  If you are too anxious to pray, ask someone else to pray for you.  At the root of prayer is the declaration that we need help and that we are not in control.  This is an excellent place to start.

3.     Give it over to God.  When I am feeling anxious, I often pray with my hands open as a sign that I am giving to God the heavy things that I am holding.  I also find it helpful to name the thing that is burdening me and praying out loud, "God, I give you my fear of ____" or "I want to trust you with ____".  It's helpful to renounce our perceived control over the uncontrollable things of life and to hand it over to God in a specific way.  Another word for this process is "repentance".  This word does not have to do with "burning in hell" as much as "letting go".

4.     Repeat.  Any significant spiritual and emotional process is usually not "one and done" but rather a process of continually relinquishing.  If the anxiety comes back, repeat steps 1-3.

5.    Remember, your child belongs to God.  Go.  Look at your child or a picture of your child.  This gorgeous person was made by God and is, right now, being parented by God.  His love for your child eclipses your own. Your job is to do your best to nurture and provide for this child but you will have limitations . . . big, fat limitations.  Your task is to do the best job that you can do while being a human being.  God gets this.

6.    Commit to living a non-anxious life as much as you can.  Take time to rest.  Take time out of the swirl of life to make simple plans for moving forward.  Feed the your soul with messages of God's love for you.  Today, I did this by cutting some roses from my garden and putting it on my desk just for me.

7.     Locate areas of avoidance and seek out help and accountability.  I find that avoidance and anxiety are dance partners.  For example, I have an ugly, mean ol' stack of papers on my desk right now that I am avoiding (out of the anxiety that I have about them) yet it's presence daily fuels my anxiety.  I have shared about this stack of papers with two friends who are praying for me and supporting me as I try to clean out patterns of avoidance in my life.  I'm taking one step at a time and it's working.

8.   If anxiety is having a long term, immobilizing grip on your life you may need to get help from a professional like your doctor, a therapist or a pastor/ leader of your spiritual community.  If you find that anxiety is affecting your sleep, eating, relationships over time please do not be afraid to address deeper needs of your life with more significant resources.

By the way, I am highly aware that battling anxiety about our children, our lives, our future, anything is not a simple eight step process. It is truly a battle.  But it's a worthy fight.  Don't give in to anxiety. It's a rabbit hole of darkness and you don't want to live there.  We were not meant created to walk in anxiety but in dependent trust in God.  He cares about you and He cares about your children. He has a good future for your life if you can trust in Him with it.

Finally, I would like to remind you that anxiety is not love.  One mom shared with me that after her child got very ill, she stopped sleeping for days embracing vigilance as a sign of her love for her child to the point where she sacrificed her own health.  God spoke to her that she does not need to prove her love for her child or to prove that she's a great mom by giving herself to hyper-vigilant worry.   I've known and prayed for many children who have been very adversely affected by the leakage of their parents' burdensome anxiety.  We don't love our children by being anxious. We love them by trying to walk in spiritual health and freedom.

How are you doing as you battle anxiety in your life?  What are you finding to be helpful?

A Fashion Eye for the Special Needs Guy

It has come to my attention that some of Josh's pants are too short.  How tempting it is to just let that be and ignore it.  I'm not good with hemming and I hate buying new pants.  After all, he doesn't care.  One nice thing about the combination of autism and intellectual disability is that my son is not at all self-conscious about how he looks.  He could wear the same thing everyday, covered with red pasta sauce and paint stains from art class and be absolutely fine.  Remember, this is a child who is okay if every article of his clothing is put on backwards.  He's all too happy to use his shirt, his pants or his hair as a napkin at any meal.   Most days, Josh comes home from school with incredibly, mysteriously messy clothes.  

We are not a high fashion family.  I mostly wear warm fleeces, jeans and clogs; sort of a uniform of a mom who is too tired and frenetic with the day's fat list of things to do to put much attention to her own fashion expression.  My girls are downstream in a very abundant flow of hand me downs so I pretty much never buy them clothes save underwear and tights.  Recently, I've been letting them pick out their own clothes which often results in some very (ahem) creative outfits usually encompassing a combination of orange, red and pink all at once.  

But as I consider my ultra rapidly growing eleven year old boy who is completely dependent on me to determine all of his clothing choices, I wonder, "How important is it for a child with special needs to be well dressed?"  

I am well aware that clothes can become an idolatry and a money pit.  I am amazed and a bit appalled at how much money can be spent on children's clothing, clothing which will be outgrown or permanently stained in seconds.  In our town we have a little mall which houses several boutique children's clothing stores.   In one of them one can find a t-shirt for a 4 year old girl tie-dyed in pink and magenta with bling in the shape of Hello Kitty faces across the front for $59.  I just don't get that. 

However, I remember going to some sort of seminar years ago where a parent on a panel gave a grave warning which basically boiled down to this, "You're kid is going to look odd enough just for being who he is, don't let him look weirder by not paying attention to what he wears."  I thought that this was an excellent point and have tried to remember this as the years have gone by.  Therefore, I am most committed to spending money and attention on clothes for Josh of all of the people in our household.

I know other parents of kids with special needs whose kids have tactile sensitivities which force them to buy clothes from more expensive brands that have extra soft fabric and seamless clothing such as Hanna Anderssen, Soft Clothing or Sweet Lemonade.  I think you have to do what you have to do and pay what you have to pay to get your kids to wear clothes that work for them.  Thankfully, Josh's sensory challenges do not get expressed in this way.  He's willing to wear just about anything that I have him put on. 

Sadly, I have also observed kids in Josh's special education classes who have inappropriately fitting clothes or who smell because they have not bathed often enough.  One special education teacher told me about a child who had been sent home in the same clothes and diaper that she came back in the next morning.  I think that it's just too easy to disregard the appearance or personal hygiene of a child who is not aware of how he or she is being perceived by others or is not able to express what he or she needs.  I get that given the tremendous amount of work to care for with meds, therapies, help with toileting etc. that our kids need, it's very easy to take short cuts when it comes to appearance and grooming but it's still important that we don't.  

My main priority is that Josh's clothes are clean, well fitting and decently in style.  I want to make sure that people take Josh seriously as he's out there in the world.  I feel a little shallow saying this but I want his clothes to communicate that he is a person of great value, presence and dignity.  I know that nice clothes to not make him so but I want others to remember the great worth of my son that might be masked by his disabilities.  

What are your thoughts about kids with disabilities and appearance?  

The Red Vest and Hope for the Future

Have you ever reached a milestone and not even noticed it only to realize that you've been working toward getting there for a really, really long time?  I remember one day in college when I realized that I was no longer putting much of my day's energy into being insecure.  I just stopped in my tracks one day as I walking through "the quad" of my college campus and thought to myself, "Wow.  I used to be so consumed by negative thoughts about myself and now, I'm not . . . so much."  It's like I had been walking, walking, walking toward a certain direction and then when I got there, I turned around and realized that I had walked about five thousand miles.  Sometimes, you just have to stop and celebrate how far you've come.

Today is one of those days in my life of parenting Josh.  It was a normally chaotic school day morning.  Alex was entangled in some sort of high level conflict mediation with the girls so I picked up Daddy's usual mantle of getting Josh out the door to his bus.  I could hear the honk of the bus in front of our house and I thought of the line of cars that was probably beginning to grow behind the little yellow bus so I rushed to get Josh out the door.   Suddenly, I realized that I needed to put the field trip permission slip into Josh's backpack so I started barking orders to my usually very passive son.  "Josh, put your shoes on!  Josh, put on your red vest.  It's cold outside.  C'mon, go, go!  The bus is waiting!"

By the time, I got his permission slip ready to go, Josh had not only put on his shoes and vest, he had zipped it up and was dragging his backpack out toward the bus.  I took one look at him and was smacked in the head with a realization:  Josh had fastened and zipped up the zipper on his red vest all by himself for the first time ever!

You need to know that we have been working on his fine motor skills since he started physical and occupational therapy which was before he could even walk.  Due to low muscle tone and his visual impairment, learning to do every "normal" task whether opening a door to walking up stairs to putting on his underwear is a big project. We have to do a task analysis, get a strategy for training and practice it a million times.

Josh has been working on zippers and snaps and buttons for at least 8 years now to no avail.  Not only are these things very difficult for his clumsy little fingers, he's just not motivated to do them and (with his visual impairment) it's difficult for him to see little things like zippers well enough to manage them.  He doesn't care that "big boys" can do these things by themselves.  To this day, he just wiggles his jeans down when he needs to go to the bathroom rather than unsnapping and unzipping because he can't manage the snaps or buttons.

Honestly, I never thought he would be someone who could zip up his own jacket without help.  I just imagined a life of helping him with these things.  Yet here he was zipping up HIS VERY OWN VEST!  My mama-pride knew no bounds!  Despite the waiting school bus and the long line of waiting cars behind it, I could not resist taking a moment to snap this photo.  I almost wanted to go up to every car waiting behind that bus and tell each of them, "Hey guess what? My son zipped up his own vest today!"

Josh's sudden ability to zip up his own vest gives me immeasurable hope for the future.  If he can master this, maybe someday he can he could fully go number two all by himself, wiping and all!  The thought of saying to my son, "Hey Josh, go take a shower" and having him be able to do the whole thing by himself makes me giddy with joy!  Better yet, what if he could discern for himself that he needed a shower and then took responsibility for his own personal hygiene?  This is crazy but why not?

After all, despite long, long seasons of non-growth, suddenly things can change and people do move forward.  Sometimes it takes forever but anyone can learn and grow.  And when growth happens we have to mark it, celebrate it and take it as a gift of hope that there are more good things to come for the future.