Category Archives: Big Kids

Letting go again and again and again

Shaking My Head Again

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Shaking my head again…there are just things that happen that can’t be explained.  The care God and others have over my son is one of them. Yesterday, we were at our river house. The river was high and muddy from some recent rain so my husband and I decided to do some inside maintenance. He assembled bunk beds while I read a good book, but I was only an arm’s length away if he required assistance. (Which he did only once or twice for a couple of minutes.) But anyway, we were inside “working” while Paul was fishing on the dock. That boy loves to fish! He has spent hours this summer with a pole in his hand and a smile on his face.

Right as my husband was assembling Step 7A bolt into step 7A nut as listed on the IKEA instructions, Paul came in and stands at the bedroom door soaking wet.  After my initial, “Move! You’re making a puddle and I’ll slip and fall!” it dawned on me that my kid had been in the swift river.

“What?!”

Paul calmly says, “Let’s start with the good news. I’m safe and I got my chair but the bad news is that I lost my travel mug and ball cap.”

“What?!”

While he was standing on the dock, his chair blew into the water, he jumped in sans life jacket to retrieve it. He was quickly swept away with his chair in his hands (hard to swim when you are grasping your favorite fishing chair.) He realized he wasn’t going to be able to swim back to our dock so he floated downstream and got out at a neighbor’s dock. Aaaaah. Safe. Another disaster thwarted.

“Thank God you are safe. You have angels looking over you all the time buddy, do you realize that?”

“Yeah, but that was my favorite hat. Uncle Gary gave it to me last year from his work and he won’t be able to get another one since the plant closed.”

“Let’s focus on the good stuff. You are safe.”

“And my mug. It’s the only one I’m allowed to use on the bus and I was going to take it to camp this week. Can I borrow yours?”

“Sure.” (I love loaning my stuff to the kid who as you can see takes incredibly good care of all of his belongings. Insert sarcasm here.) Remember, you are very lucky! You are safe!”

“I know, but I think I’ll pout a while about the hat and mug.”

Oh, brother. I return to assisting George when I hear Paul talking to someone in the yard. I go out to see a man handing Paul his missing hat and mug. It seems this man was fishing on his dock about 1/2 mile downstream when the hat and mug floated by. He “wasn’t going to risk his life to go after it, but it went right by his dock” so he grabbed it. Paul’s fishing license was still attached and he said, “Well, I know where this kid lives.” Of course he does! Everyone knows Paul.

Our river house sits on a 1 mile stretch of the river with houses, camps, and campsites 3 deep in some places. We know very few of our neighbors, but the whole stretch knows Paul. Probably from a previous rescue mission.

After the bunk beds were completed, George and I took a bike ride. We left Paul to fish (with a life vest on!) and we took a little ride. On the way back a neighbor about 5 houses away called out to us for a visit. We stopped by and shared our most recent Paul story. John and his wife Chris have many of their own Paul stories. John started sharing some of his experiences with another couple that was there. We laughed. It’s always easy to laugh at these tales after time. (Not so easy to laugh while they are occurring.) John said, “Paul is going to be all right. He’s a survivor.” I commented that he will survive, but will his parents? We shouted out our appreciation to John for friending Paul and that it “takes a village.”

George admitted that a good sense of humor helps. As we were leaving, the new guy said, “I never met him, but I know I’d love him.” Shaking my head and smiling, I was assured of two things. He will get to meet him and he will love him. Everyone does.

As Paul ages, his special needs do too. I think he will always require some aid from others. (Don’t we all?) As he nears 20 years of age, I’ve been struggling with letting go, but meeting the angels who look out for Paul helps. There are so many stories like today’s story. Not just the part of him being kept safe in the water, but the bonus gift of the returned hat.

Paul isn’t’ just surviving as the Maker of Earth watches over him, he is thriving. I think it’s time for this Mom to back up a bit, resign as the Mayor and just become part of the village. I can attest to how God has used the village in the past and I look forward to being a part of it.

This Villager, however, will be enforcing a Life Vest Ordinance more often!

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Dear Friend,

IMG_0585I’ve been writing and re-writing this Thank You note in my mind for days and the truth is, I can’t quite figure out how to write it yet. You see, there is no way I can explain what your kind deeds have meant to me without first telling you all the negative things that have been going on in my life and I think you know me well enough to know that I’m not a negative person. So, in the interest of trying to explain and in the hopes of being vague enough to not cause more grief, I thought I’d let you know how important your kind acts have been!
This spring there has been a war raging in our home. Nothing big enough to make the papers, but it has been a constant deluge of bad situations. Every day, I was confronted with something, figured out a way to handle it, and the next day it was a new surprising event. God is good and continued to show me grace and favor in the midst of the chaos. (Note: I said “in the midst” He did not shield me from the chaos but was beside me!) My son had some major trauma that was not in his control. No one should have to deal with what that boy had to deal with and all of it during his senior year. You know, that year that is supposed to be full of rainbows and dreams? His was full of doubt, trauma and an ugliness that I can’t even begin to imagine. Not knowing how to cope, he acted out with bad behaviors of his own which caused him even more pain. And, as his pain increased, his parents’ pain increased. And though his trauma took center stage there was a lot of other things going on in our lives too that we had to contend with.
That’s where you come in. You will never know what your kind words meant to me. The note, the card, the meal, the call, the hug, the plant, the text, the shoulder to cry on, the idea,  and the desire to lessen our pain in any way did not go unnoticed. Now, if you friend, were unaware of the struggles we were facing, you helped simply by being you. You made me smile, you encouraged me by assuming that everything was “normal.” You went for a walk with me, sewed a costume, mentioned mimosas, rolled your eyes, gave me a pedicure, shared an empathetic nod, and changed back into clothes to go out with me after you had already put on your PJ’s. You showed up for no reason and just were there for me. You asked me to do something and thought I was capable when I didn’t feel like I was capable of anything. If I eluded to some struggles you lifted me up in prayer. (I know you did, because I could feel it!)
I desperately want to share more with you. I want you to know how bad the details are so that I can then tell you how good my God is, but I don’t think that would serve Him well. I want to tell my side of the story to counter what may be being shared around town, but I won’t. I’ll simply thank you from the bottom of my heart for being my lifeline and helping me celebrate spring and all of it’s successes. I refer to this time as the season of Blessings and Burdens and I’ve had my share of both! You have been a blessing.  Thanks again!

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Elijah was afraid[a] and ran for his life. When he came to Beersheba in Judah, he left his servant there, while he himself went a day’s journey into the wilderness. He came to a broom bush, sat down under it and prayed that he might die. “I have had enough, Lord,” he said. “Take my life; I am no better than my ancestors.” Then he lay down under the bush and fell asleep.

All at once an angel touched him and said, “Get up and eat.” He looked around, and there by his head was some bread baked over hot coals, and a jar of water. He ate and drank and then lay down again.      

The angel of the Lord came back a second time and touched him and said, “Get up and eat, for the journey is too much for you.” So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God.                                                                         –1 Kings 19:3-7

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The Good Friday Story

aa0e1ad2d67bf1ce0bd254d3a3601881_is-clipart-sore-feet_301-279Maybe not THE Good Friday story, but definitely in our family, the following story is referred to often.  Paul will say, “Does she know the Good Friday story?” or “You should tell him the Good Friday story.”  It is definitely a story that has survived the years and the telling.

It was a good Friday, the Friday before Easter and my kids had the day off of school. They were 13,11, 9 and Paul was 4.  We didn’t have plans for the day except for my nephew coming to install a new kitchen floor for us so the kids were all in their separate rooms, probably playing a video game of their choosing.  My friend who is a pastor’s wife called and said that our family should join her church family for their cross walk.  Annually this group of worshipers carry a wooden cross through the streets of town to represent Jesus carrying the cross to His crucifixion. Of course, I thought it was a good idea, but my older kids were reluctant to be drug away from their activities.  I nagged at them to remind them of the true reason for the season and that they should thank Jesus that they were out of school for the day.  They were donning their hats, gloves, and coats as I nagged and preached.  It’s what moms do to instill righteous guilt during the Easter season. We arrived at the church complete with somber scowls and bad attitudes. Between taking their turn carrying the cross, they would come to me and whine, “I have snow in my hood.” “My socks are wet.” “My glove has a hole in it and my fingers are cold.”  Each complaint was met with my canned answer. “Jesus suffered a lot more than this, so keep going.” Each time, they came to me with their complaint and I responded with the same answer.  Last but not least, Paul came up to me and quietly said, “Before I say anything, I want you to know something…Jesus was NOT wearing these shoes!!!”  I gasped!  You see, Paul had a physical disability and had received new orthotics the day before. He received these braces that fit inside his shoes with the instructions that he was to wear them for an hour, then take them off for two hours, then try to wear them for another hour and then take a break for two hours until his feet adjusted to wearing them.  I had totally forgotten that he had them on as I whisked him out the door.  The poor kid’s feet were swollen on the bottom and I didn’t carry the cross to the church, but I carried him to the church.  I’m not sure if scripture says what kind of shoes Jesus was wearing that day, I don’t believe any and at that moment, Paul wishes he would’ve been the same.

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I Am An Adult!

unnamedPosted on the door of my studio was a sign that I scrawled out on a piece of paper.  It says, “Screaming, “I am an adult” means that you are NOT!!”

I took it down because I felt it contained a negative message and the fact that I saw it every time I entered the room did not put me in the positive mood I try to maintain.  SO, the note came down, but the message still rings true in our house.

Our son turned 18 in October.  It has been a journey since then.  He has battled with us and probably with himself over if he truly is an adult or not. We should’ve expected this process to involve more than the date on the calendar. Though we celebrated his birthday with family and friends the Sunday prior, he celebrated his actual birthday while my husband and I attended a church meeting.  A typical Thursday night, we return home from the meeting and our house smells like cigar smoke.  WHAT?!  We don’t allow cigar smoking in our house.  But, his reply was, “I’m allowed.  I’m 18!” We’ve been trying to teach him the difference between being legal and being allowed ever since.  He’s taken up smoking, enjoys R-rated movies even more and buys an occasional lottery ticket. He does all of these things for the thrill of showing off his state ID (He doesn’t have a drivers’ license.) He loves to show others that he truly is an adult.  That’s what the laminated card proves!

I wish it were that easy.  I wish we knew what stage in life we were in simply based on our chronological age.  It would sure take the guess work out of things.  We would enter school at age 6, no wondering if we should send kids on the younger side of the cut-off date.  School would be entered at 6. Three would be the age that kids were allowed to view television, potty training would be successful at 2, iPods could be gifted at 12, iPhones at 14, ears pierced at 10, learners’ permit at 15.5, license at 16.5, dating at 16, etc.  I think it would be wonderful if maturity simply matched actual age.  It would save me from quoting things like, “You are acting like a two-year-old,” and “That looks like it was done by a toddler.” Not to mention, “I don’t care if she has a cell phone or not, you aren’t old enough to have one.” There is definitely a lot of gray area in all of this.

So, my son is an adult.  The government says he is.  (He is, however, an adult who is still not able to consume alcohol.) I think instead of a State ID to deem this, though, we should have a Maturity ID.  I read a great definition of maturity.  Maturity is: The ability to stick with a job until it’s finished; The ability to do a job without being supervised; The ability to carry money without spending it; and The ability to bear an injustice without wanting to get even. When he can achieve that I’ll get him the laminated statement of his adulthood.  Heck, I’ll even engrave it on a medal for him to wear around town.  I am so looking forward to him becoming an adult and a mature adult at that!

But solid food is for the mature, for those who have their powers of discernment trained by constant practice to distinguish good from evil.  –Hebrews 5:14

 

 

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Gone.

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My fifth grader brought home her class picture last week.  It’s so fun to see the different kids in her class.  I pointed out one boy and said, “He’s a cutie,” and she said, “Well, he’s gone.” Gone? Gone where?  She went on to say that this boy has been expelled.  When I asked her for how long, she said he wasn’t coming back. Ever?! A boy who has been a classmate for 6 years is just “gone?”

My mind immediately went to the possibilities of why he was expelled.  Obviously, the school wasn’t a good fit for him.  Does he have a diagnosis? ADHD? ODD? Something else – NOS (Not Otherwise Specified?)  Poor kid.  Poor parents. I am sure this decision wasn’t made lightly and the school has an obligation to keep all kids safe so I’m not saying that this child shouldn’t have been expelled, I’m just saying that it is truly sad that he was. Again, poor kid, poor parents.

To the parents of this child who wasn’t able to stay in this classroom for whatever reason, I want to send you a hug.  I want to tell you that when I saw your son, I saw a cute kid.  He may have had a little twinkle in his eye which I recognized and thought was cute. That very twinkle that makes him unique is probably also the twinkle that causes the trouble in the classroom.  If your child truly was forever expelled from this classroom, you have my sympathy.  I doubt you are sure where to turn next. You are probably faced with many educational options and decisions. You are probably very angry and very frustrated. If we met, I would like to comfort [[[[[[[[[[[[[[[[[[[[[[[[you and say that everything will be alright, but I’ll be honest….I can’t be sure that it will.  Your child being identified as a “challenge” at this age will probably lead to a self-fulfilling prophecy and he may be headed down a path of self-destruction.  I will pray that this isn’t the case. I will pray that your family will survive this disruption in placement and that you will get the help that you all need to weather this storm.  I pray that the twinkle in your son’s eye will make him resilient and will help him rise to this challenge in a positive way. And I will also pray for you at home.  I’m assuming that the problematic behaviors at school are also problematic at home.  It takes huge effort to raise a child like this at home day in and day out and I know you get weary of dealing with it.  You get weary of dealing with the behaviors at home and you get weary dealing with the calls from the school and other parents regarding the behavior outside of the home.  It’s a tough road you are traveling.

Be strong parent. The next time you heave an exasperated sigh and throw up your hands and say, “Oh, god” recognize that it is a true prayer.  It’s not a sigh of defeat, it’s a sigh asking for help and God is truly there to help you. Where does my help come from? My help comes from the Lord, the Maker of heaven and earth (Psalm 121:1-2) and even the maker of this child with the twinkle in his eye.

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

—Psalm 121:1-8

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How Did You Do That?

636073220449256063-551921265_senior-yearPaul had his senior night for basketball last night which means I have another child at that age.  That age of not knowing what’s next and celebrating all that he is leaving.  Senior year…the year of lasts, yet the year of “what’s next”s too.  This is my fourth child going through this phase, so I am viewing it through a different lens than in the past.

My first child was the one who had to suffer the most.  I was clueless of what his future held and I felt a need to share all of my anxiety with him directly or indirectly.  I have apologized profusely for my ignorance and he has forgiven me.  The second one came around quickly and she was so focused that I knew she was headed on her way without any input from me.  The third was a little more unclear, but she headed out with a good attitude. As I face the “what’s next” questions with Paul as he approaches this season, I also have a huge question to ask the first three….How Did You Do That? I see their lives and sincerely wonder.

How did you do that? How did you know that you wanted to major in Neuroscience when you were only 17? How did you get the courage to ride your bike across the United States? How did you have the nerve to go to Time Square to watch the ball drop alone on New Year’s Eve? How did you study abroad, date via the internet, travel to Israel? How did you get a good grade in a subject I’ve never heard of, graduate with two bachelor degrees in three years, or go camping alone? How did you ask for a raise, teach surfing, or open your home to strangers? How did you go on mission trips, learn to play the ukelele, or write a song? How did you know how to comfort a child, fix a computer or weave a basket?

My kids have done all of this on their own.  When they walked onto that stage at graduation, I wasn’t clear about what they had learned or if they were prepared for the future. But they did all of the above.  Was it something they learned at school or home or was it simply inside of them all along? We can’t see what is inside of them by looking at their report card or counting the number of friends at their graduation party.  When they graduate high school we don’t know who they are and they don’t either, but I am sure glad that my oldest three have allowed me along for the ride as they found out.

Paul’s future is unclear just as all of my children’s’ futures were during their high school senior year.  As I am a bit sad to witness Paul’s lasts of high school, I am thrilled to look forward to his future.

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Life Changing Letters?

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I and D. Two little initials. another label we have been wanting for a few years. Our son is ID (Intellectually Disabled.)  Praise God!  The answer to our prayers!  Officially, our son is Intellectually Disabled.  Can you tell I find myself at the end of a long special needs journey?  The journey to yet another diagnosis.

My son has always had challenges.  It started before the age of 3 when a physiatrist (Physiatrist, NOT Psychiatrist) said that he couldn’t evaluate all of my son’s physical special needs because of his ADHD symptoms.  He couldn’t examine him well enough because my son wouldn’t be still long enough for him to check bones and muscles.  That was the first of our many life altering initials.  ADHD (Attention Deficit Hyperactivity Disorder) paved the way for us to hear many more:

OCD (Obsessive Compulsive Disorder)

ODD (Oppositional Defiance Disorder)

RAD (Reactive Attachment Disorder

PDD-NOS (Pervasive Development Disorder Not Otherwise Specified,)

CP (Cerebral Palsy)

SID , now called SPD, I believe (Sensory Integration Disorder or Sensory Processing Disorder)

ASD (Autism Spectrum Disorder)

NVLD (Nonverbal Learning Disability)

DDD, now called DCD (Developmental Discoordination Disorder or Developmental Coordination Disorder)

My son has received all of these labels and probably more than I can remember right now!  As you can see, we’ve been playing this game so long that many of the labels have changed their names, probably to sound a bit less ominous to the shattered parents.  And, we have been on this journey hoping for an MH/MR diagnosis until the term MHMR became politically incorrect and no longer existed.  Mental Handicap/Mental Retardation is now called ID (Intellectually Disabled.)

He may now be ID today, but my son is the same as he was yesterday before he had these new letters added to his list.  His behaviors always remain the same, it’s the label that changes, not the kid. Why am I doing the happy dance because of this new label?  The reason for my celebrating is that this diagnosis opens doors more easily for a kid that has always had struggles opening doors.  It will help and assist him when I am not longer able to be his advocate.  It will give him more people on his team and more funding to pay for them.  It will help.  And, that is all we can hope for.

For years he has been borderline IQ.  His scores were consistent and he fell just above the label.  His verbal abilities surpass his understanding and his good verbal abilities make him appear to have a better understanding of things than he does.  My husband blames me for this discrepancy because I read to him too much as a child.  But the truth is, as parents we do everything we can for our kids and as parents of a special needs child we work even harder.  We go to therapies, we adapt our homes, we seek, we search, we implement plan after plan.  We actually work to get our children as informed as we can.  THEN, when it comes to test scores, we find out we may have done our child a disservice because his intellect has improved a couple of points, but it prevents him from receiving much of the assistance he needs.  Yep, I shouldn’t have spent all those hours reading to him.  What a crazy system we have in place.

Today I will celebrate his new set of initials.  Each of the above named initials has introduced me to a disorder and a challenge, but each one has also enlightened me.  It has also opened doors to friendships I would not have had, to an understanding that I would never had sought out, and to a recognition of those struggling.  It has been eye opening as well as door opening.  I just pray that this last set of initials will assist and aid my son as he grows into the adult that his chronological age now says he is.

 

 

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