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Days

May 31, 2012 By Leave a Comment

Some days are just days.

Some days, I am only a mother, and not a physical therapist, or psychologist, or insurance agent. Some days, I forget Noah has autism, and our day evinces only normal, everyday life. Quiet life. Manageable life. It’s then that I get a taste of how the other half lives. And it feels good. Today is our first full day of summer vacation. The end of school was immediately followed by a trip to the beach full of so much activity and such a long return trip that Noah was spent. At one point, he sat gazing at the TV with his mouth gaping like a carp. I hate to say it, but he is easier when he’s had the dog run out of him. I am grateful for these days. I am also mindful of their rarity and hasty retreat. I have 98 more days of summer vacation to endure which are most likely not going to be this quiet or manageable.

Summer is a challenge for all mothers. For some of us, it’s like someone has hit the “super bass” button on the stereo. You and I get the same music. But mine will cause a faster headache.

Until then, I am relishing today. Quiet, recuperative, average. Because tomorrow, we’re back to extraordinary.

- Sarah

Filed Under: Autism Tagged With:

Lord, hear my heart

May 30, 2012 By Leave a Comment

A friend was asking me questions about ADD/ADHD the other day. It took me back to the days before my children were diagnosed with ADHD/ADD. I remember noticing symptoms and wondering what they meant. It really concerned me that the kids couldn’t focus a lot of the time.

I have two children with ADD/ADHD.  My oldest was very hyper and hard to settle. His impulsivity caused problems on a daily basis. Both of them could hyper focus on television, books and games which I thought did not fit. I assumed that a person with ADHD would be unable to focus but what I learned is that it is more of an inconsistency of attention. At times unable to focus and other times hyper focusing. Impulsivity, hyperactivity, distractibility, restlessness, difficulty waiting for turns, easily distracted by extraneous stimuli, difficulty following instructions, difficulty completing tasks — these can all be hallmarks of the disorder.

A book I read during the process of diagnosis was Driven to Distraction by Edward M. Hallowell, M.D. and John J. Ratey, M.D. I learned so much about the process of diagnosis, symptoms, treatments and in general what ADD/ADHD was about. It answered many of my questions and gave suggestions to help a person with ADD/ADHD.

There is so much misinformation and assumptions about all hidden disabilities. Some people are very understanding and others want to judge. I suppose that is a reflection on humans in general — how we process information about others and respond to it. I have learned to not get into discussions (or excuse myself from discussions) with people who obviously don’t understand. When people judge I have learned to take it to the Lord and cry my hurt out to Him. Who understands more than Jesus how it feels to be judged, ridiculed, belittled and punished for doing the right thing. He is the only one who really understands and feels my pain and He is also the only one who can HEAL my pain.

Lord thank you for your sacrifice on the cross and thank you that you understand and feel my pain. You alone hear my heart’s cry and you are the only one who can HEAL me. I release my hurts to you. All of the times I have been judged and misunderstood. I am so grateful that at the judgement day you alone will judge me and you know my heart and my intentions. Help me to allow you to guide me and give me Your wisdom because You are the source of all wisdom. I love you with my whole heart and I want your will in my life and for my family. Amen

Twyla

Filed Under: ADHD, healing, Parenting Tagged With:

Summer Wars

May 29, 2012 By Leave a Comment

You know the sound of fingernails on a chalkboard? (I guess that is one of those expressions that’s losing relevance with young people—but I’m hoping most of you can still relate). That is exactly what I am feeling in these early days of summer as my eleven year old (neuro-typical) daughter and her fifteen year old aspergian brother are thrust into close proximity to each other and to me. It doesn’t even actually matter if they are in the same room I’m in, they make sure to increase their volume so that I am able to hear that they are arguing.

There are wars of words–what one of them did or didn’t say. There are wars about rules. A barrage of don’t do that. Mom told you to do this. You’re going to break that. So many times these wars are born from efforts of the two of them trying to play together, but sometimes it is just because they are trying to exist in the same house, even to breathe the same air. The problem comes when they each want to be in charge and we ALL know that they can’t both be in charge. It seems like there could be a simple solution to their problems, but when we are dealing with hidden disabilities and the siblings who have to live with them, there is really little that is simple.

So, as we start out this summer which I am deeming ‘the summer of the growing up challenge’ for Stephen (our 15 year old son with AS) I want to emphasize self control when others are provoking you (and little sisters are really good at this—I know because I am one). I also want to emphasize making wise choices for yourself regarding your health. During the summer he will have many opportunities to make choices regarding his own diet, exercise, and sleep schedule. I want to help him understand how his choices influence other areas of his life including how he feels and his ability to handle his temperament. And, I also want to help him learn to recognize his responsibilities as a member of our family. My goal is to move from needing to be reminded to clean up after himself to recognizing and carrying out his responsibly as a part of the activity in which he is participating. When you take off your shoes, you put them up. When you eat a snack, you put your dishes in the dishwasher.

As I have shared before, up to this point our youngest child has seemed to pick up many of her social cues from Stephen (hence their propensity to argue so much). If ‘the summer of the growing up challenge’ is successful, I will be happy for our daughter to pick up a few social and life cues from her aspergian big brother.

~Louise

 

Filed Under: Asperger, Parenting, siblings Tagged With: ,

Dieting, autism-style

May 28, 2012 By 1 Comment

My gentle giant Dan (17, autism) had to go to the doctor for an ingrown toenail “procedure,” and during the office visit Dr. K gently suggested to him that he lose some weight. Like 30 pounds. So, being of a practical, bottom-line mind, he asked what he would have to do. I chimed in that he might want to switch to thin crust pizza instead of stuffed-crust and eliminate between-meal snacking and dessert. He said OK.

That was 3 weeks ago, and he asks for thin crust pizza from the Commissary and hasn’t had a single snack or dessert since. Hasn’t asked for any, hasn’t eaten any on the sly. Wow.

Note to self: Girl, you could learn something about self discipline and self-denial from your kid. Go thou and do likewise!

~Danz Mom, Peggy

Filed Under: Autism Tagged With:

Making Good Florida Memories

May 27, 2012 By 1 Comment

We’re in Florida at my folks’ house, helping them do some much-needed cleaning and repairs. Our girl has been a trooper, bored out of her mind but coping. This trip hits all her sensory buttons: Florida smells different–sounds different–than Virginia. Her Grammy and PawPaw live a different lifestyle than we do. Even the time-zone difference messes with Cami’s equilibrium. I have to say: she is handling all of it beautifully.

Much better than I am.

I don’t enjoy coming back to my home town. I should, being that 1.) the Gulf of Mexico beaches are beautiful, 2.) I’m with my favorite people in the world, and 3.) the weather is just about perfect. It’s just that every time I visit my home town–my parents’ house–I end up losing my equilibrium. I forget who I am and start acting like who I used to be: so concerned with everyone’s opinion of me, changing how I act to meet what I suppose other people’s expectations are, caught in the performance trap of my growing-up years.

My husband promised me this time would be different. He promised that this trip, we would spend time together doing fun things, family vacation things, building-good-memories things. He’s kept that promise so far by surprising me with a romantic dinner and a night alone in a local hotel on the beach. (Thanks, Mom and Dad!) Cami was excited for us to go, even though we went without her. She hugged me about five times before we left. I’m not sure if the hugs were meant to comfort her or me. Maybe both.

The last time we brought Cami to the Gulf beaches was on Christmas Eve in 2008. It was unseasonably warm, but not quite warm enough to swim. The chilly water temperature didn’t prevent Cami from literally rolling in the surf, fully clothed in her winter clothes. Have I mentioned how Cami best experiences life kinesthetically? I suppose that  is appropriate for someone with dyspraxia.

Swimming with my girl in the Gulf has taken this trip a long way toward our building good memories. I doubt Cami will forget her first taste of salt water. Her verdict: “Blech! That’s nasty!” The waves’ movement and sound both calm and energize her. For almost two hours yesterday, she met the waves and jumped over them, just like I used to do when I lived here. Full-circle healing–that’s what God’s been up to with us.

I’ve kept my balance this time, as Michael’s wife and Cami’s mommy. I best experience life kinesthetically also, I think. I love how we’re experiencing life together. Cami figured out how to body surf while I looked for shells in the waves. Even though I found some beauties, we both giggled at how the tiny fish faked me out. I’d think I’d see something worth grabbing through the swirling sand and water; yet when I grabbed for it, I’d end up with a face full of salty water and a handful of sand. A few times, I grabbed for treasure only to lose my balance as the waves rolled in. I’m not a big fan of sand in my swimsuit.

It’s great fun, though, making memories with Cami. I can spend many hours of the day thinking I’ll never understand her, I’ll never connect with her, or I don’t know how to help her. Yesterday afternoon didn’t hold many of those thoughts of frustration.

As we waited in the water for the next wave, Cami said, “Mom. Look.”

I turned toward her just in time to see a school of minnows jumping in the waves. The fish looked like a shimmery-silver rainbow, all of them moving in the same direction, flying free of the surf if only momentarily. “Wow!” I was definitely impressed. “In all the times I’ve been swimming in these waters, I don’t think I’ve ever seen anything like that, Cami. That was cool!”

“You’re welcome,” she said, grinning from ear to ear.

I think Jesus is redeeming my home town in my list of favorite places to visit. Seeing it through Cami’s eyes makes all the difference.

Tomorrow, we’re going to the souvenir shops to find some little trinket to commemorate this trip. I’ll be looking for a wind chime with silver fish, I think.

So blessed to be Cami’s mom,

Cassandra

Filed Under: Gratitude, Journey, Parenting, Sensory Processing Disorder Tagged With: , ,

For the Joy

May 25, 2012 By 1 Comment

I tell my kids, “There is a heaven, and this ain’t it.” And I am not kidding. There is something on the other side of all the pain of hidden disabilities. If I didn’t believe that, I would just plant myself 6 ft under right now. My nephew is fighting cancer with daunting odds (not that Jesus uses earth math) because, “I haven’t seen enough of life to be tired of it yet,” he says. Most of us (older people) have.

His little 6 yr old brother was surveying the top of my dresser the other day, which happened fortuitously to be right at his eye level.  I had my earrings tossed there (for lack of a travel pack), and he had time to kill. My earrings were by far the most interesting (and foreign) thing on his horizon at the moment. Pierced ears are new to him and he was curious to see how earrings go in, and out, and do they hurt? And how did they put that hole in your ear? And why do you wear them? He didn’t ask if he could touch them because it was obvious someone needed to help them find their pairs, and being the center of the universe like we are at 6, he was that someone.

One of my joys (in addition to little boys) is gazing at sparkling things. Like gems. (Nothing beats the Smithsonian for floor to ceiling gems – I was enchanted). So I asked my little sidekick, “see those sparking ones?” He picked out the diamond looking ones (cubic zirconium, to be precise), the green, the lavender, the blue…while finding their matches (of course).

With delight, I told him, “Those remind me of heaven. God says He made heaven with walls and foundations of precious stones like these…which means they are valuable and beautiful.” Wow, he was impressed. And the rest of the day, when he saw something sparkling, he asked, “and will it be like that??”

Yes, like that. But I must say, it’s going to take a lot more than sparkling gems to persuade me it’s worth enduring the pain down here. A LOT.

Just now, walking down the hall on this pediatric floor (which is my 2nd home lately), I can hear a small boy sobbing and screaming in pain.  His desperation is inescapable. I wince on every level of my being, as my heart competes with my mind to sort out thoughts of sympathy for him, his parents, and the staff…

I’m waiting my turn to get in the public bathroom. I just have to listen, from a distance, which is hard enough. But the adults in that room have to tap into something deeper, to stay in the room with all that pain. As I stand there, I think they must have compassion and fortitude to survive emotionally, since they obviously cannot eliminate this great pain, nor can they leave the room.

And (still waiting my turn) I’m wondering, “when you get to the bottom line, why would anyone choose (like the staff) to endure being around great pain?” (I know books have been written on this, but I am just an aunt, waiting her turn in the bathroom, unable to escape the drama in Room 8012.)

As if He had been waiting for me to get down to this question, Jesus brings to mind,

“for the joy.”

As in, “for the joy set before Him

(Jesus) endured the cross,

scorning its shame,

and sat down at the right hand of the throne of God.” Heb 12:2

He did it FOR THE JOY. For the Joy of seeing us healed, like pediatric nurses do it for the joy of seeing their little people healed, tricycling down the halls. And Jesus helps me endure the daily inescapable pain of hidden disabilities in my loved ones because I have that same JOY somewhere up ahead. Just like Jesus did.

For the Joy,

Joan

Filed Under: Bible, Hope, JOY, pain Tagged With: , ,

The Hardest Trip

May 24, 2012 By 1 Comment

We’re headed to the beach – the family home we haven’t seen in nearly 18 months. The kids are out of school, the weather promises to be idyllic. What for your ordinary traveler might be just a “nice weekend,” is for two war-weary parents with a disabled child, a chance to grasp at heaven. Matt and I may as well be first-classing it to the Maldives for as excited as we are.

The resort town is a perfect child’s playground – ice cream stands and pirate-themed trinket shops, a boardwalk and bikes to rent, and a playground and sand and lighthouses dotting the peninsula like giant candles. There are hours of activity in store for Noah, Grace, and Jesse. And from the second-story deck from which we can see the ocean, the adults can talk for hours in hammock chairs with the kids scrambling at our feet. It is very nearly perfect for everyone. Save for one tiny detail: the road trip required to get there.

Under “ordinary” circumstances, we should make the trip in about 5.5 hours. However, we’re lucky if we arrive in fewer than seven. And now, with the loss of modern conveniences like the car’s DVD player and CD player (thank you, Jesse for proving that both devices work just as well as coin slots as they do electronics), it’s going to feel a little like a Bonanza wagon train. Just imagine a very long, very hot, very boring, very crowded car ride with a child in the backseat repeating, “Bad, Jesse! Bad, Jesse!” Then imagine the offended child starts screaming, as anyone would, should their moral composition be repeatedly questioned. Then add another child, who will start whining that she’s hot, or that she didn’t really want chicken nuggets (even though she explicitly told you otherwise), and will extend her leg to Noah, whispering, “Noah, you better not touch me.” To which the first child will respond as anticipated, and the girl will scream with operatic shrillness and set every dog down interstate 95 to fits of barking. Then imagine all of this occurs in holiday traffic, with a whistling window seal resulting from a poor repair job, and a son who insists on eating the same sunflower seeds as his dad (and in the same abundance), which means potty breaks of more frequency and greater urgency than anyone could have anticipated. I usually need a wheelchair and a bag of IV fluids by the time we get there – just like some actress/singer/“celebutant” claiming exhaustion. Listen, I have no personal beef with Rihanna, but I doubt girlfriend’s taken a drive like ours.

So if you think of it this holiday weekend, will those of you without children, or with children who are better behaved, or with cars of better repair, headed on shorter drives – will you pray for us?

And then, sitting on the beach in what is left of the magenta sun, watching my son scream into the misty air as he delights in the roar of the coming tide, I promise to pray for you.

- Sarah

Filed Under: Asperger, Family, FUN, Holidays, Journey, Prayer, Uncategorized Tagged With: , , , ,

On Identifying with our Disabled

May 23, 2012 By Leave a Comment

I don’t know if you’ve heard the story of Ian and Larissa. I am quoting from Larissa’s blog from April 22nd with the following post.  Underneath the link are some writings from my friend Helen’s Caring Bridge website for her husband, Matt, who has a brain tumor.  I think everyone who lives with someone with hidden disabilities can relate.

I have a brain injury, too 

On Friday after work, it was warm in the 70s, the end of the day was on my mind followed by two more work-less days. Driving home with the windows down, I watched as people were jogging, playing tennis, sliding down the homemade slip-n-slide outside their college apartments. My desires to “do something” were growing. And I was so glad to not be at work.

But then I got home and saw Ian sleeping, so tired from his cold, and not able to go for a run with me. Or even a walk. And his disability again freshly became mine. And I had to try to fight to let my desires to go out and enjoy something die.

This is what it’s like to be married to someone with a tbi. I imagine it’s the same for someone who is chronically sick, or has special needs, or who is dying. Their sickness becomes their spouses sickness. I have a brain injury, just like Ian. Because when we became one flesh, I gained his sorrows. Just as Jesus was a man of sorrows and has shared in them with us, I share them with Ian. And while it is a gift of marriage, it is painful and sad.

We could probably write a whole book on this topic alone. Because it changes everything about our life, even mine. But Jesus knows it more deeply than us, and if we can just rest there, we will be filled.

Thank you, always

Larissa

My friend Helen added:

This helped me understand why I feel so sad much of the time.  Matt and I are one flesh.  His sorrows are mine and mine are his.  I am able to do things he can no longer do and while I’m grateful to drive, enjoy the kids, live without pain every moment, etc…there is a sadness that accompanies me as I’m doing all of these things.  I’m always aware of Matt and that he is not with us or of what he is not able to do anymore.  When I see him walk with his left arm hanging there or each time he smiles at me with his crooked smile or when he’s sleeping in the middle of the day or on his i-pad playing games for hours it makes my heart sad. And Larissa helped me to see that it’s normal to feel that way.  Sorrowful, yet always rejoicing.  There is peace in my heart, we have times of laughter, I am thankful to God for so many things but life is not as it once was and it’s not as it should be.  God created Adam and Eve in that garden as perfect humans.  There was not cancer, pain, sadness, sin.  But when sin entered the world all of that changed.  And yes, I believe God is sovereign over all.  I believe that He uses ALL things for our good, even brain tumors, BUT they are a result of the fall and one day…oh one day…it will be different.  Rev. 21: 1, 3-4 Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and there was no longer any sea…And I heard a loud voice from the throne saying, “Now the dwelling of God is with men, and he will live with them.  They will be his people, and God himself will be with them and be their God.  He will wipe every tear from their eyes.  There will be no more death or mourning or crying or pain, for the old order of things has passed away.”  Amen.

http://www.youtube.com/watch?v=AEBzPi2GbkI

 

 

Filed Under: Acquired Brain Injury, God's presence, Marriage Tagged With: ,

People of Influence

May 21, 2012 By Leave a Comment

 

Me with my husband, mother and three of our four children at Andrew's high school graduation 5/2012

Here we are wrapping up another year of school. My second oldest just graduated from high school. Stephen (AS) will finish ninth grade this week and my daughter, Katie, has completed fifth grade. It is that time of year that lends itself to reevaluation and introspection, to review and goal setting, but mostly to a great big sigh as we have navigated through another year of school with teens.

As I look back over the year it has been a really good year for Stephen. I believe a large part of that is the contribution of the adults who have been involved in his life. When Shannon and I attended Orange Conference last month one of the speakers (I really wish I could remember who it was) talked about inviting other adults to be people of influence in your child’s life. When adults from across the age spectrum invest time and take an interest in your child’s spiritual, emotional, and/or intellectual development they send your child a message that they are important and valuable. In Stephen’s case, his teachers at school have been very encouraging to him and challenged him to do his best. Adults he works with in our church nursery always love working with him because he plays well with the kids and does a good job. He has been involved with Buddy Break (which I have written about in other posts) and has received very positive feedback from the adults involved.

The benefits of having other adults encouraging my son are two-fold. First, as I mentioned, they help him see he is valued by people other than his own family. But, second, it takes some of the burden off of me as a parent in feeling I am the lone ranger singing his praises solo all of the time. My fear is that after a while, he will stop listening and think I only say nice things because I’m his mom and it is my job.

I am so grateful to those who are being people of influence in my son’s life. But, as I said, I’m reflecting and setting some goals here. So, my question to myself (and perhaps to you) would be in whose life should I be a person of influence? Is there a young person who needs me to speak words of kindness, encouragement, and support? Am I watching for and listening to God as He directs me toward opportunities to invest in the lives of young people who are just waiting to know that someone (outside of their family) cares?

~Louise

Filed Under: Asperger, community Tagged With: ,

Waiting on Him

May 21, 2012 By Leave a Comment

I have copied a section of one of my favorite chapters in the Bible, 2 Chronicles 20, below.  Sometimes I feel overwhelmed with everything I have to do and at this time in my life have some major decisions to make which I hate to do. The passage below is one I read before the Lord.  I pray it encourages you.   God is faithful.

After this the Moabites and Ammonites, and with them some of the Meunites, came against Jehoshaphat for battle. Some men came and told Jehoshaphat, “A great multitude is coming against you from Edom, from beyond the sea; and, behold, they are in Hazazon-tamar” (that is, Engedi). Then Jehoshaphat was afraid and set his face to seek the LORD, and proclaimed a fast throughout all Judah. And Judah assembled to seek help from the LORD; from all the cities of Judah they came to seek the LORD. And Jehoshaphat stood in the assembly of Judah and Jerusalem, in the house of the LORD, before the new court, and said, “O LORD, God of our fathers, are you not God in heaven? You rule over all the kingdoms of the nations. In your hand are power and might, so that none is able to withstand you. Did you not, our God, drive out the inhabitants of this land before your people Israel, and give it forever to the descendants of Abraham your friend? And they have lived in it and have built for you in it a sanctuary for your name, saying, ‘If disaster comes upon us, the sword, judgment, or pestilence, or famine, we will stand before this house and before you—for your name is in this house—and cry out to you in our affliction, and you will hear and save.’ And now behold, the men of Ammon and Moab and Mount Seir, whom you would not let Israel invade when they came from the land of Egypt, and whom they avoided and did not destroy—behold, they reward us by coming to drive us out of your possession, which you have given us to inherit. O our God, will you not execute judgment on them? For we are powerless against this great horde that is coming against us. We do not know what to do, but our eyes are on you.”

Meanwhile all Judah stood before the LORD, with their little ones, their wives, and their children. And the Spirit of the LORD came upon Jahaziel the son of Zechariah, son of Benaiah, son of Jeiel, son of Mattaniah, a Levite of the sons of Asaph, in the midst of the assembly. And he said, “Listen, all Judah and inhabitants of Jerusalem and King Jehoshaphat: Thus says the LORD to you, ‘Do not be afraid and do not be dismayed at this great horde, for the battle is not yours but God’s. Tomorrow go down against them. Behold, they will come up by the ascent of Ziz. You will find them at the end of the valley, east of the wilderness of Jeruel. You will not need to fight in this battle. Stand firm, hold your position, and see the salvation of the LORD on your behalf, O Judah and Jerusalem.’ Do not be afraid and do not be dismayed. Tomorrow go out against them, and the LORD will be with you.”  Then Jehoshaphat bowed his head with his face to the ground, and all Judah and the inhabitants of Jerusalem fell down before the LORD, worshiping the LORD. And the Levites, of the Kohathites and the Korahites, stood up to praise the LORD, the God of Israel, with a very loud voice.    2 Chronicles 20: 1-19

LORD, I do not know what to do, but my eyes are on You!

Waiting on Him,

Gabrielle

Filed Under: Encouragement, Expectations, Prayer, schizoaffective disorder Tagged With: ,
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