Archive | Coping

Spousal Relationships when Dealing with Special Needs Children – Part I: Grief

Grief Special Needs Child 2I remember laying in bed the night the doctor diagnosed our son, Will, with lung disease.  Earlier that day, the doctor informed us that our son would need oxygen 24 hours a day.  He told us that doctors did not know much about the long-term affects of the disease.  The disease had only been “discovered” about 10 years earlier.  That day, our son’s future suddenly became unclear.

As Tyler and I lay next to each other, staring at the ceiling, with tears running down our cheeks, we talked about Will’s future.  Our conversation went something like this:

Tyler: “Well, I guess he’ll only ever be able to play golf.”

Me:  “No way.  This might not look like what we expected, but Will is going to be fine.”

We still shed tears and worked to adjust to our new future, but my adjustment seemed to happen more quickly than Tyler’s adjustment happened.

Fast forward six years…I walked down the hall of the hospital right after finding out that David’s “episodes” were seizures.  I felt hollow.

After the diagnosis, each time David had a seizure, I freaked out.  Gasping for breath.  Panicking.  Crying.  I could not handle knowing that seizures consumed David.  Panic attacks hit me for weeks.

HERE IS THE IMPORTANT PART…how did Tyler handle David’s diagnosis?  COMPLETELY DIFFERENTLY than me.  Tyler’s heart stayed calm. He kept saying, “Trish, it’s going to be fine.  David is going to be fine.”

With Will’s diagnosis, I had an easier time coming to terms with it than Tyler.  With David’s diagnosis, Tyler had an easier time coming to terms with it than me…and that is okay!

WE GRIEVE DIFFERENTLY!

I’ll never forget Aimee talking about how she and Ryan had to GRIEVE when Tex was diagnosed with autism.  I had never thought about the fact that Tyler and I had grieved over Will’s diagnosis.  Recognizing our grief made a big difference for me.

I think it is important to understand that grief is a MAJOR part of receiving a diagnosis for a special needs child.  Grief does not just happen when someone dies.  Grief happens when there is a LOSS.  With a diagnosis that your child’s future looks differently than what you expected, grief comes.

I remember Aimee talking about how she and Ryan each grieved DIFFERENTLY with Tex’s diagnosis.  I immediately thought of how Tyler and I reacted differently to Will’s diagnosis.  Suddenly recognizing that our reactions that seemed so different, our view of our son’s future that seemed so different, our ability to move forward that came at different times, recognizing that all of those things translated into Tyler and I grieving in our own ways made everything so much better!  The times Tyler and I felt frustrated with each other because we did not understand why the other person said or did or felt differently…it was all because of grief!  We simply needed to grieve and everyone one of us grieves differently!

I’m no expert on grief.  But, for me, the road to getting through grief started with recognizing that Tyler and I WERE grieving.  For me, RECOGNIZING that Tyler and I were grieving helped me take a step back.  Recognizing that we grieve differently helped me love my husband even more; it helped me want to love him THROUGH our grief instead of feeling frustrated that he was not handling it like I was handling it.  At the same time, when it came time to grieve for David’s situation, recognizing that my grieving process took more time, that it felt desperate, helped me communicate my sadness with Tyler.  It helped us grieve TOGETHER even though we grieved differently.

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10 Ways to Gear up for Summer with Special Needs Children

SummerWhen you have children with special needs, summer can be extra stressful. During the school year, the school day provides a lot of the structure and routine that so many special needs children crave. But during the summer, we as parents are responsible for creating and maintaining the schedule that will help our children function at their best all day. We also have to anticipate how our children will transition to summer because it is such a major change in routine when school gets out.

Last summer, I decided to gear up for summer by doing a few things that would reduce stress throughout the summer. Here is my top ten list for gearing up for summer when you have special needs children.

  1. Decide that this will be the summer when you and your children will THRIVE. Sometimes we just have to change how we think about things. Whenever I get myself into the rut of thinking that I am just in survival mode (and sometimes with good reason), I find that I am giving myself permission to be on the brink of losing it. I am just one meltdown away from being pushed over the edge. But when I am trying to thrive in the situation I am in, just that mental shift works wonders with how I approach difficult situations.
  2. Stock your freezer. Mealtimes can be some of the most stressful times of the day, so do everything you can to make it less stressful. Double or triple your meals during the month of May and freeze the extra portions. You’ll be surprised how quickly you will have a stockpile in your freezer without a lot of extra work. Freezer meals also cut down on dinner cleanup time. I also like to precook and freeze all the meat I might need for recipes, it saves so much time. I have even started freezing things for breakfast. Pancakes and banana bread freeze great, and then you don’t start the day with such a mess in your kitchen.
  3. Decide how much structure you will have in your day. Many special needs kids need a lot of structure to thrive. But for me, it can be hard as the parent to provide as much structure as my kids really need. If I try to create too much structure, it is hard to be consistent. If I don’t create enough structure, my kids struggle more with what to expect each day and we have more meltdowns. Decide how you will balance these two needs. At my house, I keep our mornings very structured, but the afternoons are pretty carefree. I also post a schedule of our morning routine in the kitchen so my children know what the expectations are.
  4. Get the help lined up that you need to keep your child progressing. Decide if you can give your child all the help they need to keep progressing (academically, socially, physically) or if you need to enlist the help of others. Sometimes it is hard as a parent to be the caretaker, the therapist, and the tutor 24 hours a day. The first summer we hired someone to help my son with autism, I felt like such a burden had been lifted! I have also used volunteers from my church to help me with some occupational therapy activities. Sometimes you can even find college students who need experience working with special needs children.
  5. Start taking good care of yourself now so you’ll be in a good place for summer. We all know that an empty well cannot give water to anyone. Similarly, a stressed out mom who is at the end of her rope doesn’t have anything left to give to her family. If you find yourself battling fatigue, start getting more sleep and exercise now. I recently watched this video online, and it really hit home to me. I have to take better care of myself so I have the energy to be patient with all of my children the entire day. When I consistently get sleep and exercise, I am a better mom.
  6. Find programs in your area for special needs children. Do some online research to find programs that will help your kids with their specific disabilities. Some autism groups in the community have summer field trips. Local CHADD websites often have information on summer programs for children with ADHD.  Some Recreation Centers provide Adaptive Aquatics, a program offering private swimming lessons for children with special needs at the same price as a group lesson. In addition to programs for special needs children, there are great programs for all children during the summer. Summer Movie Clubhouse has weekly movies for $1 (only $5 for all 10 movies!). Kids Bowl Free has information on free summer bowing.
  7. Decide what your family screen time policy will be. Decide in advance how much time your child will be allowed to spend watching TV, playing on the iPad, playing on the computer, etc. Having a policy in advance can reduce the number of arguments about screen time. I have found that my children behave much worse if I let them have too much screen time. Last summer, I let them each pick one 30 minute show and they rarely pushed for more because they already knew the expectation. Also, decide if you will let them earn extra screen time and what they have to complete before they can have any screen time.
  8. Figure out what life skills you want them to learn this summer. Summer can be a great time to teach some of those life skills that you don’t always have time to incorporate during the school year. The thing I worry about the most with my special needs children, is if they will be able to function well as independent adults. The more life skills I work on with them now, the better they will do in the future. Some ideas for life skills are: doing laundry, tying shoes, managing money, cooking, cleaning, combing their own hair, etc.
  9. Make a plan for helping your children stay active. We all feel better when we are staying active. I think this applies even more for children with special needs. Think about what physical needs or coordination areas your child might need to work on, and brainstorm ways to address that in a fun way. One of my children has very tight hamstrings and low muscle tone. We are incorporating stretching and muscle strengthening activities. We also love swimming lessons, riding bikes to the park or elementary school, and walking the dog.
  10. Honestly evaluate how your summer went last year. Think about what went really well last summer and what did not work. Did you have enough structure? Were you running around too much? Did you feel stressed out all the time? What was the hardest part of the summer? What was the best part? When I did this a year ago, I realized that the hardest part of summer was usually the week before school started. I was feeling burned out, my children were anxious for school to start, and honestly, I think they were ready for the structure that school provides. So we planned a short vacation for the week before school started. It was the best August we have ever had and I will always try to incorporate a short vacation right before school starts.
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Getting Throught the Hard Days with Gratitude

A while ago, I had one of those really hard days as a mother of children with special needs. I had taken Paul and Matt for an evaluation for some summer therapy. As a parent of children with special needs, I had started to think that my children had come to a good place and I felt content about where we were.

Then I had one of those moments of reality, where all of their deficits were all too apparent.

Paul was running around in circles and very uncooperative. He didn’t want to do anything the therapist asked him to do. I saw how many motor planning issues he still needed to work through and that he still struggled to cross the midline. Even though we did years of occupational therapy when he was younger, we just didn’t do as much as he got older. He was generally functioning so much better and he was doing amazingly well, especially for where he had come from. But in that moment, I saw how far he still has to go. It was so overwhelming.

The tears started to flow as soon as I got in the car. I tried to say a few positive things to Paul as he sat in the back of the van, but I was completely overwhelmed. I had a babysitter waiting with the other kids at home, so I had to try to keep myself together. I took a few minutes to cry and got through the rest of the day by going through the motions, but I had such a heavy feeling in my chest. I carried the burden of wondering how I would ever be able to give my son enough attention to help him work through all the things he still struggles with. And how could I ever balance the needs of all of my children and his need to have time to still be a child?

As my mind tried to work through the heaviness I felt, I decided that when the kids went to bed I would make a list of all the things that I am grateful for because I am a mother of children with special needs. I have heard so much about the difference a gratitude journal can make, but I have had a hard time being consistent in recording my gratitude. As I thoughtfully made the list, the tears came easily. It is a hard, painful journey at times. But as I finished my list, I realized that the heavy feeling was gone. I felt at peace.

Some of the things I wrote are too personal to share, but I wrote about how I have learned to be less judgmental of other children and parents. You never know what quiet struggles others might be dealing with that lead them to the one moment you might witness at the store. I wrote about how I think I am a better person because of what I have been through with my children. I don’t think I would be as deliberate in my parenting as I have had to be to help my children through their challenges. I have a stronger marriage because we have to work together to really meet the needs of our children. I have witnessed so many little miracles, showing me that God is on this journey with us. He wants these children to reach their full potential too, whatever that potential might be.

These are things I don’t think I could have learned any other way. Sometimes it would be nice to be able to take away even just a few of the hard things my children have had to face. But I know that I needed these experiences so that I could learn to be a better person.

Dieter Uchtdorf, a leader in our church, said:

It might sound contrary to the wisdom of the world to suggest that one who is burdened with sorrow should give thanks to God. But those who set aside the bottle of bitterness and lift instead the goblet of gratitude can find a purifying drink of healing, peace, and understanding.

Since that night, I have tried a little harder to take the time to be grateful so that I can have that healing, peace, and understanding that I need to keep moving forward on this journey with my special needs children.

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To the Woman in the Red Shirt

You must have followed me around the food court for quite a while.  I wasn’t thinking clearly.  Our first flight had been delayed and now our second flight was delayed.  I was tired.  I was worried about my boy.

I wandered from restaurant to restaurant trying to figure out what food my boy might want; what food his little tummy could handle.  I ended up down the hall, far away from my husband and my son.

I’d left them in a corner while I looked for food.  My boy in a wheelchair, a scar on his head, curled up with his blanket.  My husband, giving our boy pain medication.

I tried to hand the cashier my credit card to pay for the food.  She tried to hand me cash.  I was confused.  I looked around to see who still needed her change.  The cashier kept trying to put the money into my hand.  I asked her what it was.

She said it was my change; that the woman in the red shirt had paid for my food and told her to give me the change.

“What?  Wha…?” My voice trembled.  Tears came to my eyes.  I shook my head over and over as the reality of a stranger’s kindness caught in my throat.

I looked around, desperately looking for you and your red shirt.

I hope you saw me searching for you.  I hope you felt the fullness in my heart.

To the woman in the red shirt…Thank you.  Thank you for feeling.  Thank you for noticing.  Thank you for touching my heart though we’ve never met.

 

 

 

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No More Sharks

I’m David’s paternal grandmother and a guest blogger at Welcome 2 Holland.  Yesterday, April 24, was not like any other day. It was a day of high emotion that I can only release through writing.

We were a brave little group traveling to the hospital at 6 am, but not as brave as David. His ability to live in the moment and trust the adults in his life is part of God’s provision. We waited, made small talk, and entertained David (and vice versa) before the surgery. We cried hard when they wheeled him away to surgery.

We ate breakfast while they cut into David’s skull. We checked email, played Uno, talked business, and hung on every text that came from the operating room. After four hours we cried again when Dr. Gonzales told us they’d successfully removed a rock-hard mass that was causing David’s seizures.

We gathered around David’s bed in the ICU and filled the room with our silent prayers of thanksgiving. David slept peacefully and looked angelic amidst the bandages, tubes, and machines. We didn’t have words to express all we were feeling. The unknown was now known.

This is David’s journey and I am humbled to be part of it. There are children who are sicker than David at the Cleveland Clinic, but there are none who are more precious or more loved than that little boy who just wanted the ‘sharks to stop biting his tummy.’

David, I think they got the sharks. Praise God!

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Morning of Surgery

Waiting for surgery started like this:

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 It soon became this:

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And then this:

Grandpa waiting for David's surgery

 David wanted to show Kate his yellow socks:

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 With our surgeon, Dr. Gonzalez-Martinez.  Only one parent was allowed to go back with David to surgery until he fell asleep, thus my outfit.

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Surgery started at 7:30 a.m. and is expected to go until after noon.

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Preparing for Surgery

Last week I rode my bike for the first time this year.  One of the first songs that played through my headphones was “Beethoven’s 5 Secrets” by The Piano Guys.  Go ahead and look it up.  I’ll wait.

Got it?  Okay.  Let’s ride together.

As I rode, feeling my legs pump faster and faster, harder and harder, every door in my heart burst open.  All of the emotions I’ve held back, every bit of grief and sadness and yearning for peace and attempts to stay calm burst free like the Hoover Dam breaking into a million pieces and flooding the land below.  I gripped my handlebars harder.  My body dropped closer to the frame of my bike.  Tears streamed down my face.  I cried out in complete anguish of emotion.  A hill came and I stood up.  I pushed my legs as hard as I could.  I pushed my heart to feel; feel it all.

I let my feelings flow freely.  I felt them as deeply as I could.  I cherished them.  The physical, the emotional, the spiritual all at once.  The blood pumping, my heart pumping; I felt power and love and peace.

I stopped at the top of the hill and breathed.  My heart open and my head clear.

The next song to come on…”I Will Survive” by Gloria Gaynor.

“At first I was afraid.  I was petrified….”  Okay.

I climbed back on my bike and started moving those legs.

“It took all the strength I had not to fall apart….”  (I may have fallen apart a few times in the past few months….)

“I will survive.”  Yes, we will.

My legs started movin’ and groovin’ as I rode.  Eight minutes of hearing “I will survive” over and over again goes a long way to help your outlook on life!  Thank goodness for an extended version of that song with plenty of repetition.  After those eight minutes, I was in a nice rhythm on the road.  The future felt sunnier, clearer.

Next song…my ipod was on random shuffle and I think Heaven may have intervened in the shuffling that day…”Happy” by Pharrell Williams.

By this point in my ride, I was on a rural road with a little creek next to me.  Ducks paddled happily along.  Birds flew by singing a spring time melody.  Trees blossomed around me.  I sat up straighter on my bike.  I smiled.  I thought of my family and our life.  The more I rode, the happier I felt.

Not only will we survive this, but there is much happiness coming down the road.

We arrived in Cleveland late last night and checked into the Ronald McDonald House (RMH.)  This morning, a boy who David played with last time we visited said to him, “Hi, Friend!  Welcome back!”  We are glad to be back.

We were suppose to meet with the neurosurgeon this morning, but they postponed us until tomorrow.  So, I don’t have any specifics yet regarding David’s surgery on Thursday.  We did meet with a pediatrician for a pre-surgical check-up.  Afterwards, David had some blood drawn.  The phrase “Much weeping and wailing and gnashing of teeth” appropriately describes that experience.

After we meet with the neurosurgeon tomorrow, David has another MRI and then a haircut.  He and Tyler will be twins!  Should be exciting.

I am thankful for the peace I feel about David’s surgery.  I am thankful for the RMH.  I am thankful for the ability we have to be at the Cleveland Clinic.  I am thankful to all of those watching our other kids while we are away.  I am thankful for a surprise visit last Saturday from two people who mean more to me than they will ever know; who strengthened my heart like no one else could.  I am thankful for God’s hand in our lives.

 

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