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Date Night with my son

October 30, 2011 By 2 Comments

 

What a full heart I have from my date night with Daniel (17, autism). It wasn’t announced, planned or anticipated: it’s just that Dad is out of town, and Daniel fixates on whatever coupons we have lying around the house. In this case, an unused coupon for $5 off at Uno’s is just too much for our resident pizza-hound to bear. It’s simply unforgivable we should let something like that expire. And as he pointed out. “We haven’t been there in a LOOOONG time!” And if you’ve never had their deep-dish cookie sundae for dessert, well, let’s just say he didn’t have to twist my arm too hard. Not to mention my first week on the job as his high school’s Attendance Secretary has, shall we say, “inspired” me to stay late to finish the day’s workload lest I start the next morning already behind the power curve. (Read: I had no clue what to do for dinner.)

 

The shared pizza and sundae didn’t do much to actually nourish our bodies, but oh, what the conversation did for my soul! Yes, a conversation. Not a gameshow monologue where I had to pretend to be interested, but bits and pieces, back and forth, an exchange. Vacation plans for July. A query from me as to his understanding of what daddy’s new job is all about (Executive Director, Naval Sea Cadet Corps.) How his English teacher and para bragged on what a fantastic job he did that day on his presentation of Elton John’s Candle in the Wind: An Historical Perspective. (Refer to my earlier posts on God and Elton John to get the full significance of this.)  We talked about his post-high school future, and how he still does not know what he wants to be when he grows up (either a gameshow host or some sort of actor/entertainer.) And the eye contact! He looked at my face! He seemed interested in what I had to say! He was responsive, engaged, appropriate!

 

Driving home, I said “I REALLY enjoyed that dinner, Daniel.” He said, “Me too.” I said, “The food or my company?” He said, “Both.” That was a gift, straight from God’s heart to me. Thank you, Father.

 

~ Danz Mom, Peggy

Filed Under: Autism, Encouragement, Gratitude, growth, Hope, Journey, Parenting, Teenager Tagged With: , , , , , , ,

Sweet moments with my son

October 29, 2011 By 1 Comment

I had a sweet moment with my son this morning. This boy who is more of a man than a boy now.

We were both up early.  Me for my normal morning routine.  Him for his first breakfast before going back to bed on a lazy Saturday morning.  He was getting his meds and a conversation began.  I am not sure exactly how it happened but we began to talk about those early days before meds.

Those were chaotic days.  Lots of huge emotions.  Raging, panic, paranoia, giddy laughter – you name it, we experienced it at the extremes of your imagination.

This morning that seems so very far away.  I am looking at my boy-man, bigger than me, leaning over to hug me.

I told him about how we came to his current med mix. It was a journey, as it often is, of trying one med, seeing some benefit but still not stable.  Then trying another med.  Frankly, I am a believer that it is as much art as science.  I know this part is what makes many think this is not actually medical/scientific but much more spiritual/behavioral.

Their thoughts don’t actually matter much to me right now.  The reality is that we were in such crisis and God extended His grace to our family through medication.

And today, I look at this bigger than life boy-man and think he is growing up well.  He is learning to manage his life challenge.  We still hit bumps in the road – some louder and more disruptive than others (what Mom of a teenager would not say the same?)

But today, I am grateful for how far we have come.  I look with anticipation to see how God will continue to carry us in our  journey together.  He is so faithful.

Grateful for many things,

~ Hannah

Filed Under: Bipolar Disorder, Encouragement, God's presence, grace, Gratitude, growth, Hope, Journey, Medication, Parenting, Teenager Tagged With: , , , , , , , , ,

The Sparrow Family

October 16, 2011 By 3 Comments

Dan (17, autism) just returned home from 10 days at PERT but we won’t know much about his experience until we get the Report in several weeks. He doesn’t have the ability to verbalize his reflections on it, although we were able to eke out of him that even though he asked to come home 4 days after we dropped him off, he was glad he stayed. So, a victory! In fact, he is growing up. His PERT Case Manager said he was VERY vocal about not wanting to be there, but that he was compliant with everything they asked him to do. Sounds very mature to me: self-advocating, but managing his emotions - YES! I reassured her that his core anxiety was how much school he was missing and how much work he would have to make up, rather than an indictment of their program.

 

So, we will have to wait for their analysis of what he got out of it, or at least how he performed while there, which will be an invaluable tool as we march WAY too quickly toward transition from high school in 2013. But hubby and I learned something significant about US: our marriage will survive The Empty Nest. Don’t get me wrong: we’ve had plenty of parenting breaks while Dan was at various summer programs. But this was the first time I have carried on with my normal working life during one of his absences. Working at Dan’s high school enables me to take summers off, so I was always on vacation when he was. This was different. It was a tiny taste of what our new normal will look like in a couple of years. Yes, I missed him very much and was glad to collect him and bring him home. But it was pretty cool to get to see two grown-up movies in one weekend. (Shameless pitch: See COURAGEOUS before it leaves theaters!)

 

We have been on the autism road for a long time now, since Dan was clinically diagnosed at age 4 (and in Early Intervention for a year before that), and have always been committed to facilitating a life for him separate from us after high school. Yes, this terrifies me. But a long time ago, we read a book (which of course I can’t find right now) about a teacher who followed her young autistic students into adulthood, and the single most important factor influencing the functionality, personal happiness and satisfaction of those she studied was whether or not they lived at home.  And the happiest, most well-adjusted ones weren’t. As a result, moving Dan out after high school graduation has always been a given in our family. We haven’t decided on a program yet, but we’re investigating options.  The Report from PERT will give us more direction.

 

In the meantime, we wait. We attend parent-teacher conferences, we go to a Navy Ball. We wait to hear whether I will get yet another job I applied for at the school, we make Thanksgiving plans with dear friends who were transferred and are sorely missed. I fret over my Mom’s spinal surgery next month and sing my heart out at church choir practice every week. In other words, we are living our lives.

 

But it’s nice to know (Lord willin’ and the crick don’t rise) that I will have a Papa Bird to share my empty nest with when our youngster finds his wings.

Luke 12:7
But God even knows how many hairs you have on your head. Don’t be afraid. You are worth much more than many sparrows.

Dan’s Mom ~ Peggy

 

Filed Under: Autism, Change, growth, Journey, Marriage, Parenting, Teenager Tagged With: , , , , , , ,

Making a List

October 5, 2011 By 2 Comments

We’ve walked into many beginning-of-the-school-year “meet the teacher” meetings and I still feel unprepared every time. How do I adequately describe my son in a few sentences? How do I provide information that will be useful to his teachers in the classroom and provide them with the kinds of information the IEP will not? Will they really understand who my son is based on the things that I tell them?

Although I have much disdain for lists, I do occasionally find them helpful (shhh, don’t tell my husband.) This is one particular instance where a list is recommended. By thinking through the ways that my son has struggled in the classroom I feel more prepared to paint a picture for his teachers that will prepare them to assist him in the classroom.

A list won’t guarantee that his teachers will recognize and address the issues I mention, but the list will help me feel like I have begun the process of working with them to encourage his success in their classroom.

  • Many times he becomes irritated because of noise, disorder, or the behavior of classmates (he likes when everyone follows the rules.)
  • He becomes frustrated easily when he doesn’t understand something, but he is very uncomfortable asking for help.
  • He doesn’t like changes from his normal routine—including when there is a substitute or when an assembly causes the day to run on a modified schedule.
  • He can be very stubborn. It is very difficult for him to recognize and admit when he is wrong.
  • His emotions can change quickly.
  • While it has rarely been an issue at school, he can have an explosive temper.
  • He sometimes complains of stomach and/or headaches. Most of the time when this happens we probe to find out if anxiety may be the root cause.
  • His physical coordination is not very good and he doesn’t enjoy sports.
  • He feels uncomfortable when he is put in a situation where he is expected to “mingle” with other kids his age.
  • He has difficulty picking up on sarcasm and nuances, thus he doesn’t always “get” jokes.
  • He doesn’t take criticism well.
  • He really wants to please his teachers and make good grades.
  • He loves being at his current school.
  • He is an auditory learner (great listener, not such a great note taker.)

Although the hidden disabilities our children face may or may not be the same, many of the features are shared. As you make your list, also include items that indicate your child’s strengths. It is good for both you and your child’s teacher to recognize that while we are dealing with some major obstacles, we are also working with some uniquely gifted children.

~Louise

 

Filed Under: Asperger, IEP, Parenting, school, Teenager Tagged With: , , ,

Sometimes Bob eats at our house

September 26, 2011 By Leave a Comment

Table manners are not a strong suit for my son. He tends to be a picky eater. But on occasion, when he enjoys his food the noises he makes can make me a little crazy. It reminds me of the movie, What About Bob, starring Bill Murray as Bob.

Sometimes I sit through lunch and can see this scene from the movie in my mind. It helps to find humor instead of worrying so much about teaching proper table manners.

I will keep trying to teach good table manners. But sometimes I just have to let it go and be glad he enjoys his meal.

Smiling,

~ Hannah

Filed Under: humor, Parenting, Teenager Tagged With: , ,

Sometimes the punishment doesn’t fit the crime

September 24, 2011 By Leave a Comment

I am trying to be discerning about what’s worth fighting about.

If I fight about everything with equal fervor, how do any of the parties figure out when I REALLY MEAN IT THIS TIME? Most of us think “pick your battles” is good strategy. I think it keeps us from taking ourselves too seriously and demonstrates grace in just letting some things go. Do I have to be right ALL the time, or can I let shalom reign sometimes?

Now, it must be said that my definition of “things worth fighting about” may be different than yours, and sometimes I defer the fight. For example, my autistic son’s diet. You don’t know what a picky eater is until you have a child with autism. Yes, I fed him chicken nuggets, fries, spaghetti and pizza for years (with a whole-food supplement, what a good Mommy am I!). Yes, I complained while doing nothing about it. “We’re not working on that right now” was a constant refrain. I was too busy with, oh nevermind. I was working on other stuff.  One time, he left a plate of something he would not eat on the table for 3 days. Yes, I caved. I decided not to work on that yet. Then miracle of miracles, he became a teenager, and a voracious appetite started working in our favor to get him to eat new things before he could have an old thing he liked. And we are making good progress. Timing is a huge factor in winning battles.

But this isn’t about Daniel’s diet. This is about the day I wanted him and my husband to go to the church choir family potluck with me. We do not press these things on him frequently. This was an annual event. He goes to youth group while we are in church, so no one sees us as a family. My 2 men are the loves of my life, and I love being in the choir, and it was a family event, and I put my foot down.

“I’M NOT GOING AND YOU CAN’T MAKE ME.” Hmmm, good point. It would be difficult trying to physically stuff my 6’2″, 230 lb. son into the car against his will. So I used a strategy that works every time with him. Threaten to withhold something he depends on me for. He does not live an independent life. I drive him to school, I make his dinner (success in getting him to make his own breakfast, hooray!), I do his laundry, we give him an allowance (although that is not much incentive when he brings home a paycheck from Papa John’s every week). And of course, “no TV or videogames or computer for a week” is a good one.  But am I morally obligated to “make the punishment fit the crime,” so to speak? “You ARE going to the potluck with us or else….” What? No, I’m going for efficacy here: I am going to do whatever works.

So, the day of this event came, and we went for our usual Sunday-after-church-fast-food-lunch, and I announced if he persisted in his decision not to go with us, he could walk home after lunch. Very doable, straight down the road, one mile. Go with us or walk home, pick one. “I don’t like either of those choices!” he said. “Well, that’s life, those are your only two choices. You can think about it during lunch, and then you have to decide.” I wasn’t really sure which way he would go. I know he hates to walk, but I knew he REALLY did not want to go to the potluck.  So I thought if he didn’t want to go that badly – enough to walk home - I would honor that choice.

The decision moment came. He got in the car. I said, “By getting in the car, you are deciding to drive home with us and go to the potluck. And you will NOT whine about it all afternoon, got it?” (Gloomily) “I got it.” And he didn’t whine. And he went. And he suffered, but he didn’t make anyone else miserable.

So I need to remember what power I DO have. That the consequence doesn’t have to correspond to what I want him to do. That I need to have compassion on him and the limitations his disability imposes on him. To stretch him without breaking him.

Staying flexible – Peggy

 

 

Filed Under: Autism, Discipline, Parenting Tagged With: , , ,

Rut vs. Routine

September 20, 2011 By 2 Comments

The old adage is “a rut is a grave with the ends kicked out” and I can understand the sentiment behind that. I hate to be stuck in a rut doing the same things over and over. But, for my AS son, the rut (which we could also call “the routine”) is a comfortable and safe place.

At the moment I am thinking about the constant clothing battle we face. He will continue wearing the same clothes despite the fact that his pants have become high-waters or that his once white tee-shirt is now a dull gray and bears small holes from repeated washings. Last year I took him to the store in order to find something he liked that looked nice to wear to church. Our church is very casual so I wasn’t looking for dress clothes…I just wanted something that looked nicer than his too short jeans and ragged looking tee-shirts.

We went shopping and together selected two button-up shirts that he liked. We also found coordinating tee-shirts he could wear underneath. Both of the shirts would be fine to wear with jeans, so we bought jeans that were long enough and I felt good about our purchases.

Now, a year later, he still wears one of the button-up shirts (the other one got too small, but he wore it until it became uncomfortable for him). The shirt he wears is black and he has decided that instead of the shirt we bought to wear with it he prefers to wear a white “I ♥ NY” shirt that has been in the family for several years. He wears the shirt unbuttoned and my husband and I both have told him how much nicer he would look if he would just button the shirt. He likes it unbuttoned and that is how he wears it…every. single. Sunday.

When I think about it I have to smile because I remember that I was the one who bought the shirt for him and encouraged him to begin wearing it. When I bought it I never thought about the fact that it would become the clothes he would wear for church every Sunday until it became too small. Does he have other options? Yes. Is he open to them? No, because those are his “church clothes.” I suppose it is time to go shopping again and maybe buy four shirts so there’s a different uniform for every Sunday of the month.

As I think about this I am reminded of my grandfather. Until he died (when I was in high school) I thought he wore the same clothes very day. When I saw his closet I found out that he had many pairs of khaki pants and many work shirts—all the same. Maybe he had a touch of AS…who knows.

~Louise

 

Filed Under: Asperger, Parenting Tagged With: , ,

Turning a Corner?

July 19, 2011 By Leave a Comment

It seems like a question we are forever asking ourselves. I’ve even mentioned it on this blog before. “Is this particular issue a result of Stephen’s disability or is it normal teenage behavior?” Having two older sons who do not struggle with the same disabilities you would think that I could easily identify these differences, but I can’t.

Lately I have noticed that it is not as big of a struggle to get Stephen to help around the house. We don’t launch into the usual battle each time he is asked to empty the dishwasher or mow the grass. I might even use the words compliant and willing to describe his reactions when asked to perform most household duties. Are we turning a corner?

This leads me to wonder … as I relate the stories of our life with Asperger to those of you who may not be as far along in this journey … would we have reached this ‘point of less resistance’ earlier if we had given Stephen more chores and responsibilities earlier. Because he relies so much on routine and predictability, I believe we would have. Perhaps it would have actually been beneficial to him if we had taught him how to make his bed, expected him to clean-up after himself and given him age appropriate responsibilities around the house all along.

My point here is to offer encouragement that there may be a day and a time that every simple request will not be met with anger or contempt. Stay strong and continue working to teach your child manners, social etiquette and life skills. Our goal is to provide them with the tools they need in order to succeed in this world without our assistance.

All of us face different issues and different levels of disability. If you ever foresee your child living on his or her own and possibly having a family I would suggest that you make a list of the ways your child needs to gain independence. My list could have started out with cutting his own meat at the dinner table and included other things like taking out the garbage and washing his clothes. Then, you can slowly start incorporating those things into your child’s routine. My husband taught Stephen how to make pancakes and now he volunteers to make pancakes for the whole family! Although it may take a few battles and frustrating days, weeks or even months, hopefully you will see the day when your child will recognize his or her own ability to care for him or herself and take a giant step toward adulthood.

 

Filed Under: Asperger, Encouragement, Journey, Parenting Tagged With: , , , ,

Spring in the Air

May 22, 2011 By 2 Comments

I love Spring. Every year I think this. The winter seems long and dark and cold. And then Spring comes with its light and fresh air and flowers.

I know many people feel this way. But it is especially true in a home with bipolar disorder.

Well Spring is here in our home. This last month has been sweet. And hopeful. My son has been getting up with a can-do attitude. He has taken on his school work with diligence. He has been more cheerful around home.

But the real test came this week when he had his front tooth break and we headed off to the dentist.

I have to tell you that I was dreading the day. I really thought it would be one of those difficult days when I was apologizing for his curtness. But it never came.

He received awful news at the dentist – she informed him that the pain wasn’t just the broken tooth but an abscess in his mouth. And she was concerned about a shadow she saw on the xrays and sent us off immediately to the Endodontist who confirmed the inevitable — root canal. Not one, or two, but THREE.

Oh my, it is coming now. The anticipated eruption of frustration and anger.

But … nothing….

I have never been so happy with nothing in my entire life.

He was as charming and delightful as you could have hoped any teenage boy could be. In very difficult circumstances. He told the nurses at the dentist’s office, with a broken smile, that they were really nice ladies but he sure would prefer not to see them so much…. And he teased the Endodontist about the crazy dentist (Steve Martin character) in Little Shop of Horrors.

I left the endodontist with him and praised God and him. I praised God that the tooth broke so we could find out about the bigger problem, hidden beneath the surface. And I praised him that he was responding so incredibly well under difficult circumstances.

It ended up being such a good day. I never would have thought it could be when it started. God was so present and gracious with us. The memory will linger. And for very different reasons than I would have thought.

Hopeful,

Hannah

Filed Under: Bipolar Disorder, Encouragement, God's presence, grace, Gratitude, growth, Hope, humor, Parenting Tagged With: , , , , , , , ,

Realistic Expectations

March 27, 2011 By 6 Comments

Sometimes trying to find next steps for a teenager with bipolar disorder can be mystifying.  Finding the place of balance between high hopes and deep despair to something real and possible can be difficult.

The reality is that while my son’s intelligence is extremely high, his ability to manage stress is extremely low.  What kind of job is out there for an incredibly gifted thinker who can’t manage stress?  I don’t see one.

Sometimes I despair as I pray for direction and wisdom for this boy.  Of course, I know that the fact that I despair means I need to go back to the Father.  He is not despairing.  He has a plan.  I just can’t see it right now.

We are at the place of considering colleges.  While it is still two years away it is time to begin those conversations.  He dreams of Ivy League.  That is not happening.  He cannot sustain the level of attention and pressure necessary to make the grades for that to be possible.

I just dream of a regular four year college for him — One where he can have “the college experience” and be on his own with the cushion of mom and dad still present nearby.

Sometimes I wonder if even that is possible.

My husband talks about a community college.  I see that as his living at home still.  To be clear, I love my son dearly but he is a lot to handle emotionally on a day to day basis.  The idea of his staying home longer and not launching haunts me.  So sad to feel that way but it is true.

So we continue to pray.  And we continue to teach and mold.  And we look for the path God will reveal. 

But for today, we are just trying to get through the end of the third quarter.

Hopeful,

Hannah

Filed Under: Bipolar Disorder, grace, Hope, Journey, Parenting Tagged With: , , , , ,
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