Archive | May, 2014

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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David’s Buddy Named Yan

10171144_403729636435724_208447874567327721_n[1]We met a six year old boy named Yan on our first night at the Ronald McDonald House (RMH.)  Yan pushed around a pole with fluids and other monitors connected to his body.  David, Yan and I played at the train table; Yan, circling the table as he pushed his trains around the track, dragging his pole behind him, happy as can be.  Yan and his mom have been at the RMH for a year fighting Yan’s brain cancer.

I follow Yan’s Fighters on facebook.  My heart aches for their family.  Yan loves people.  At the RMH, everyone knows Yan.  He talks to everyone.  He wants to play.  He’ll pull up a chair during dinner to join you.

While we were at the RMH, I didn’t know much about the details of Yan’s situation.  I was preoccupied with David.  However, now that I’m home, I’ve learned more about his fight.  To put things in perspective…we’ve been home from Cleveland less than three weeks.  Yan has had FOUR surgeries since we left.  FOUR!  I think his total brain surgery count is 25 or 26!

Please help me help this family.  Here is a link to a GoFundMe account set up to help pay for Yan’s medical bills.  Over and over again, people helped lift our burden as we struggled with David’s situation.  I want to help lift Yan’s family’s burden.  Will you please help me?!  Let’s make a difference!  Please donate any amount you can to help lift their burden.  Again, here is the link:  GoFundMe/Yan’s Fighters.

I am thankful to have been around Yan at the RMH; to know him and his mom; to see their strength and their courage as they battle such a difficult disease.

Yan's Fighters

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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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No, David!

No, DavidHave you ever read the book “No, David!” by David Shannon?  The author wrote and illustrated the book when he was five years old.  Each page shows a picture of him doing something he was not suppose to do, with the words “No, David!”

I keep thinking about that book as David recovers at home from his surgery.

“No, David!  Please don’t climb on the counters.”

“No, David!  You cannot climb the tree.”

“No, David!  Please get off of your bike.”

“No, David!  We’re not going bowling or swimming.”

The doctors told me many times that I would be surprised by how quickly David would recover from his brain surgery.  I envisioned a quick recovery as two to three weeks of him sleeping most of the day, playing a bit with the other kids, but mostly just observing.  I could not have been more wrong!

We arrived home late Tuesday night.  David woke up at 7 a.m. on Wednesday with his older siblings.  He started bustling around with them like any other morning getting ready for school.  He asked if he would be able to go to preschool that day.  He started climbing the counters to get some dishes for himself.  He wanted to play baseball and golf.  Truthfully, I about died from anxiety!  I kept envisioning him accidentally getting whacked in the head during the excitement of being back with his siblings!

As soon as his siblings left for school, he walked back to his bed and slept for FOUR hours!  Then, he woke up and started playing again.  It was crazy!

I can’t believe how well he is doing.  It is difficult to keep him down when the other kids are at home.  He still tires quicker than normal and he’ll fall asleep within minutes of the house being quiet.  But, he is happy and quickly working up to his normal pace of life!

David has not had any seizures since his surgery.  He seems to be calmer than before, too.  The neurologist said he is not surprised that David is calmer.  He described David’s brain (pre-surgery) as a “fire storm” of electrical activity.  Now, David’s brain seems quieter.

David will stay on all of his regular anti-seizure medications for a long time (1-5 years) to make sure his brain stays seizure free.  If, over time, David stays seizure free and if his EEGs show that there is not seizure activity, then we’ll be able to possibly wean him from some of his drugs.  But we have a different boy than we had before surgery and we are SO, SO thankful.

We are thankful for modern medicine!  We are thankful for the prayers of so many; for the hand of God; for the miracles we’ve seen.  Mostly, we’re thankful to see a calmness in David’s eyes.

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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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