The Third Letter: God Knows What He Is Doing

 The Third Letter3 

Dear New-to-autism Parents,

There is so much I want to write to you about, but most importantly, I want to tell you what a dear friend told me when I first discovered my son has autism.

I had called her to tell her what I feared, that Sage has autism.  I was incredibly afraid of what the future held for him, as well as for our family.

At the time we only had Sage and his twin sister, Hope. We saw the differences in development between the twins, and it became so drastically different, that we knew something wasn't right. Hope would converse with us, Sage wouldn't. Hope wouldn't run away if we put her down outside, Sage would bolt away in the blink of an eye. Hope would come to us if we called her by name, Sage didn't seem to know he had a name.

He was unengaged, but we didn't know to use that term yet. He was so extremely bright in things like the alphabet, numbers, shapes and colors, and building things, that we didn't "get" the extent of his disability at first.  It wasn't until the extreme tantrums over unusual things (like crayons falling after he carefully placed them standing on the flat end, lined up in the order of the rainbow), the sudden refusal to sleep (like I wrote to you about in the last letter) and the absence of speech and understanding of the english language, that we knew.  Sure, he had bad eye contact and sensitive hearing--he often covered his ears in pain, but those signs could be explained away.

So it was a big surprise to us, to learn about his autism. And, it was devastating.

I was plagued with questions: Would we ever hear him voice his thoughts? Call me Mommy?  Would he play with his twin sister? Would he be destined for group homes? Will we spend our lives in and out of meetings with Social Workers and Agencies of different types?

I did not want that!

You see, I did that as my job when I was in my 20's. I knew the burn-out that can happen working in that field, and there I was: the field became my home, my life, and I was scared.

So, when I called my friend and told her, "I think Sage has autism." It was all I could do to get those words out. It was as if saying it out loud, would make it real.

Do you want to know what she said to me?

She responded(no doubt inspired by God)with, "Merri, God is holy.  He doesn't make mistakes."

And that, my dear friend, is why I am writing you this letter.  Those two sentences not only changed my entire way of thinking, but directed my path ever since.

You see, God knew Sage has autism. It was only news to me. Sage was the same gift from God that he always was. I just discovered something new about him. God's plans for him are the same, and they include his autism. He didn't make a mistake; He is making art.

Not only that, but God had prepared me from my teenage years, when I was intensely interested in autism (after I had seen a true-to-life story on T.V. about it).  Because of that, I sought out my first real job working in group homes.  I worked with all sorts of people from those developmentally disabled to mentally ill to a mix of the two. From about 18 years old until I was 28, I worked either in Group Homes or In-home Supports.  I loved it (aside from the stress it could bring at times), and I loved the people I worked with, and I loved my families I worked with.  I loved my co-workers and supervisors. It was a great job and I learned a tremendous amount about people with disabilities and services out there to help them and their families.  

So when I looked back, after the initial stomping-of-my-feet at God, I could clearly see that God had this all planned out for me too... even before I was married and had children, He had this planned out for me since before I was born. 

And knowing that has made it much easier to embrace, because you see... It isn't bad. It is good. It is God. 

Our society says it is sad, but God says that "we" -- all His children (with no modifiers about being what we think of as "perfect") are God's masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago."  

I pray that you will be able to embrace your child's autism as well, and know that he or see is a beautiful piece of art in the eyes of God, with a very important task that only your child can do. He or she was born for such a time as this.

Until next time,

Merri

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Taking a Break, And 7 Ways To Cope With It

Taking a Break

As I push the front door open, a blast of the "smells of home" rush at me.

But this time, the home smell is all mingled up with the smell of unfortunately, sweet urine.

Ugh.  Memories of the days tantrums fill my head as the odor assaults my stuffy nose and scratchy throat.  Stevie had a big meltdown and somehow managed to spay urine all over his room, and all over all his bedding, and stuffed animals, toys.... It will be a very hard task to get the smell out of the house. I am not really feeling up to that task.

It's amazing how much a smell can effect ones mood. After getting out of the house yesterday for my weekly "Mommy time", and breathing fresh air...the stench at home is all the more apparent.

I went from feeling refreshed to oppressed rather quickly.

There is so much physical work to do today, to restore the house to a home again. February break has taken its toll on all of us.  I always have to hold back a bit of a laugh when they say, "Have a nice break!" with a big smile like it could actually happen that way.

The boys crave routine.  Stevie, who hates school, but needs structure (maybe even if only to fight against it, like he's used to) has the hardest time on breaks without a routine. It's like what he thought he wanted so badly, to be home and not at school, brings him disappointments he can't cope with. The "Little Red Computer" just isn't scratching the itch as entirely as he wished it would.  And yesterday, being the beginning of the end of the "break", seemed to be the day this all exploded like steam out of a steam-powered locomotive.

When it comes to Sage, well he loves school, and as good as he is doing these days, I know he misses the routine, and knowing what will happen and when. He wants to know the days schedule and we don't have one to give him. Instead of physical meltdowns, Sage is armed with a verbal rifle loaded with a list of bullets for everything we've done wrong or that breaks a "rule" in his mind, and he fires at will.

Trapped at home, with head-colds and, well, each other, the end of this week is welcomed.

I used to feel guilty for not wanting the breaks that others seem to live for. But for those of us with special needs families, breaks are more like boot camp than the break we really need.  There is more prep-work in the form of social stories about the break, planning activities, writing out schedules, etc. than there is on normal weeks, and there are more meltdowns from the change of routine and disappointments that arise.  Cabin fever reaches an all time high as there is more time stuck in the house--since no one person can take my four kids out at the same time-- and with that comes more to be cleaning up from the faster-mounding messes.

Now, instead of feeling guilty about dreading school breaks, I choose to be thankful for a safe school to send them to, with consistent routines to satisfy their crave of structure, and for the  teachers who can care for them, even when they don't want to be there.  It really helps to remember that a break is just that. A break. A temporary change with an end in sight.

I have found, over the years of breaks-gone-bad, that there are some things that help make a break better. This includes:

1) Plan an activity to look forward to for each day. Even if it is a short and simple activity in the house, like baking something or making a craft, it helps.

2) Print off a blank schedule like the one Do To Learn has, and make each block count as 1/2 hour. List what you DO know will happen, and when. Then the kids can see where their free time lives, and when something is going to happen. I try not to list too much, because in reality, we can't predict what will happen or won't happen, at any given time. We can just plan for it. When something doesn't happen as expected, there tends to be meltdowns. So I try to stick with "less is more" in this department.

3) Invest in having a big activity for the week. If you are able to go out of the house, then do it!  If not, then I have found over the last couple breaks, that ordering something like a Kiwi Crate has been an absolute life saver!  All the kids love it, it's relatively cheap to buy, and there are great quality supplies. Also, you can take it as far as you want--from a two year old level to a 12 year old level or higher.

4) Get morning mood-boosting sun.  Every day you can kick the kids out of the house in the morning to get sunshine, do it!  This week has not been good for this with all the snow storms and rain. But when it's sunny out, it really helps to have them soak it in for 15-20 minutes. This is a recommendation given to me by the boys developmental pediatrician. It is supposed to help trigger natural melatonin production, which helps with wake/sleep cycles. 

5) Get the kids moving.  Provide an outlet for proprioceptive (deep pressure to help tell them were their body is in space) and vestibular (sense of movement) input.  Get the kids lifting heavy things (like laundry or groceries in from the car). Jump on things like an indoor trampoline, or on the couch cushions.  Or,  just do jumping jacks and see how high you can count with each one, or jump to the alphabet.  (A great reference for these kinds of activities is The Out of Sink Child has Fun by Carol Kranowitz) .  If you have an indoor swing, that would provide some vestibular input, or you could have the kids spin in circles and fall to the ground--an old childhood favorite of mine.

6) Play music.  Having things like The Mozart Effect: Mozart in Motion (my favorite) playing in the background, or a family-favorite album, can help with the overall tone of the house.  

7) Get yourself out of the house (alone)!  I know, easier said than done. But it really is a sanity saver! Not only do you get a break from the stress at home, but the kids realize that they miss you, and that they still want to be around you even if they're tired of being home.

Oh, and one more bonus tip:  Remember, your time of refreshing will come!  Even if the whole weeks break and all the planning is a flop, it will come to an end. School will re-start. Those few hours of no kids, or less kids, in the house will come. At this point, it is only 3 days away!

For those of us struggling to get through this break, I would like to pray a blessing over us, from Numbers 6:24-26

The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace.

 What ways have you found to make the breaks go more smoothly? Please comment below to share ideas!