Special Sleep

Finally, I have time to write.  I guess that brings up the topic of sleep with a special needs child or children.

The first week of school it was great no one to interrupt him and he was taking four-hour naps and off to bed with brother and sister.  Then it was no naps, just some quiet play time as was a house rule through Kindergarten (aka. Mommy sanity time).  Now we have kind of adjusted to the nap every couple of days.

Last week he had a great nap…I madly tried to catch up on everything that needed to be done.  Then came bed time.  No such luck.  Then came Mommy’s bed time.  No such luck.  Then came Daddy’s bed time…you HAVE to go to sleep now!  I guess for the most part I have been fairly lucky when it comes to naps and night-time with my kids.  I have heard many stories of kids on the spectrum that plan just don’t sleep.

I feel very blessed in fact as a baby I was on the spoiled side with my middle.  He took horrible naps maybe 20 min max and usually it was in the sling while I would work on the computer (I kinda miss that…I loved the snuggle sleeping baby stage!).  Come seven o’clock he was out…tuck him in bed and  kiss him good night.  We did not see him until the morning and if he missed bed time he would not be too happy with you he wanted to go to bed.  For the most part he has always slept well.  As he got a little older he would wake up at 3:30, I guess there is something magical about that time because I don’t even need to look at the clock if he is awake it is 3:30.  His neurologist recommended Melatonin and it works great for him!

Our third child’s sleep I believe is a little closer to the typical spectrum child sleep.  Completely Random!  At one he would finally sleep through the night on most nights.  Unless he had a bad dream, needed water, or it sometimes felt like whatever excuse he could come up with to not sleep.  Although, I have to admit once we controlled some dietary issues I truly do think he had a valid tummy ache on lots of nights because the sleeping is much better when he is on his strict whole foods diet.

I guess this is it for today.  I really thought that nap was gonna happen but I am hearing the “MOM” you can’t make me sleep voice.  “MOM” I know you are there “MOM”!  I guess I don’t have a lot of advice for this topic but just know you are not alone in the middle of the night adventures.

Gum Update

I have heard for a while that aspartame is bad but my son really needs gum and I had found no alternatives in our local stores.  It was one of the first questions I asked vendors at the Autism Conference, ”where do I find safe gum?”  At the time I was less concerned with the Aspartame and more concerned that most commercial gums were made with Red 40 and our newly found Blue dyes.

We have just found Spry gum.  I have not tried it yet but it was recommended at the convention and by our neighbor that conveniently sells natural health products that I ran into at the mail box a couple of weeks ago.  It has been amazing to talk to her; she does not deal with autism but has gone all natural because of other health issues.  It has changed her live so much that it is now her career.

I can’t wait to get my new order of gum so he can safely chew without causing more problems because of the chemicals that are in the gum!

Check out my first gum post : My Gum goes Everywhere!

Dairy Free Chocolate Chip Cookies

They turned out great!!

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A friend kindly offered my son a cookie yesterday as his sister quickly said, “he can’t have that!”  The tears started as she said, “sorry buddy,” and he realized…wait I am missing out!

As the group of mom’s discussed that he was dairy free and that was why he could not have them.  I stated there must be a recipe but cookies were the one thing I really had not found a replacement for on his dairy free diet.

I don’t want him to miss out.  I searched Pinterest last night until I found a recipe that I considered good enough to try.  Actually I ended up adapting my all time favorite cookie recipe.

Dairy Free Chocolate Chunk Cookies

1 Cup Sugar
1 Cup Brown Sugar
2/3 Cup Coconut Oil [I did not measure so might be a little less than 2/3 cup]
2 Eggs
2 t Vanilla
3 Cups Flour
1 t Baking Soda
1 t Salt
1 1/2 Baker’s Unsweetened Baking Chocolate Squares broken to little pieces 
 

Bake at 375° —- 8-10 minutes

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Dairy Free

I have learned so much over the last few years that some days it is hard to think about what to share…there is so much.

For about 6 months to a year we fought horrible allergies with my son.  The allergies were so bad, they were causing blisters on a nearly daily basis on the skin of my son’s diaper area.  It was horrifying.  Diaper changes were a nightmare.  I would often cry after diaper changes.  The doctors could not figure it out.  Eventually we ended up at a dermatologist and urologist at the children’s hospital.  The treatments would help but not eliminate the problem.  It was continually changing.  Yeast.  Staph.  Allergy.  Something would help then we would stop the treatment and the problem would come back.  It was miserable for him and me.

Eventually by luck we (me not the doctors that we paid the big bucks) figured out the main culprit was a neurotoxin, iodopropynyl butylcarbamate.  We had not changed the baby wipes we were using but the company had added this ingredient to the baby wipes causing a very adverse reaction in my son.  After it was completely eliminated from his products we have had no blisters. Yeah!!

While we were going through this above allergy issue my son was also having GI issues.  All the doctors insisted he was not allergic to milk.  I kept asking, are you sure?  No.  When I was nursing him as a young baby he would get oral thrush if I drank any milk within a few hours of him nursing.  I had not nursed in quite a while so had kinda forgotten.  He had been eating cheese for a long time so it did not seem like it should be the culprit.

One day I had just had enough of the GI issues and said I am just gonna stop milk again.  I started giving him soy milk again.  He got better for a few days then it got worse again.  We gave up again as the results were not consistent.  The next time he got sick the only thing he would eat was granola bars.  He was not getting better like he should have been after a few days of feeling ill.  I took the package and looked at the ingredients.  There was no milk but there was whey.  The same protein that is removed when making cheese.  We have a winner!  When we had stopped milk before we had not completely removed all products that had milk in them specifically, WHEY!

Whey, was the key to all successes.  He is a completely different child now.  After about six weeks he was nearly completely recovered and the best part he talks!!  He can use better descriptive words then his older siblings after all those months of no talking [by talking I mean no attempt to communicate verbally or non-verbally].

At first I was really worried about all the favorite foods that he would miss out on because they contain dairy or that it was going to be so hard to prepare food for him, constantly making something different.  It has been so easy and has benefited other family members as well.  For the most part we are a dairy free family now but we still eat our favorite foods.

HOW TO SWITCH

Most of the time it is really easy.  We are also soy free as it was worse for our family then milk.  Most recipes we just switch milk for rice milk or almond milk.  The first change was in pancakes if you have read my blogs you probably could have guessed.  I simply substitute either one of the other milks for the milk that is called for in the recipe.  Muffins same thing.  Butter is sometimes harder because of the texture, I use oil where I can or fruit puree if oil does not work.

My husbands favorite is Alfredo.  At first I thought it was no longer an option.  I was so wrong!  I made a cream white sauce with the rice milk and it is so much better then the Campbell’s soups we used before.  Tomato soup is the one thing that we have found is so much better with milk but we did make it dairy free too…fresh from the garden!

Yogurt was another favorite of my son’s.  He gets the coconut milk yogurts.  They are expensive but he loves them.  I am hoping to try and make them at home one of these days.

Dairy free takes a little more time but the reward is exponentially worth it!

Good Bread

My youngest has never liked bread.  After we learned some of his allergies I just figured it was because he knew it made his tummy upset because he does not tolerate milk well and most bread you buy in the store has milk.  I went to the bakery last week to get some fresh bread to go with our homemade broccoli cheese soup and he loved the bread.  I was a little surprised, but once in a while he will eat bread so was not a big deal.

A couple of days ago we were given some bread from the same bakery and he almost threw a fit about having to have some.  That was a little weird, that is normally his brothers roll on bread not his.  That is when I realized maybe it was not just the milk but the preservatives too.

I had just read an article about the history of Pepperidge Farms, those little goldfish he loves, the mother that started the company had a son that had allergies to the preservatives and artificial ingredients in the breads she bought.  Hum, this sounds very familiar.

Along with the food allergies our son has allergies to preservatives too.  At the first sign of allergies it was so hard to figure out the problem because there was a combination of things that were contributing to making a really big problem.   We have been trying to add fresher foods and eliminate all the processed foods.  I guess I never thought of bread as processed food but of course they add preservatives to keep it fresher longer.

We went to the bakery this morning and he walked out with a baguette in his hands saying, “Good Bread!”  I think we will be visiting the bakery more often.

Back to Pancakes

I’m gonna go back to pancakes today.  Hands down my middle son would pick pancakes for 90% of his meals if given the choice.  He LOVES pancakes although for some reason he is on a waffle kick right now.  It works out great because they warm up in the toaster better than pancakes.  He has his waffles while the rest of us can choose something else like the smoothie my daughter and I had this morning.  Strawberries that had been frozen, yogurt, and orange juice mix it up in the Vitamix and a delicious breakfast drink.  We like pancakes but not every morning like brother.

My pancake recipe is one my dad made when I was a kid from scratch.  I first started modifying it when we realized that my youngest son had a milk intolerance.  Same recipe just different type of milk.  I sometimes would throw in oatmeal, applesauce, or a banana.  [I hated when my dad would try and sneak things in…I could always tell…for me it was the chunky and the smooth textures.  I remember feeding that smooth baby food with the chunks to a toddler in my daycare and he would gag every bite.  Who likes that texture anyway?]  Anyway, that was as far as I had modified my pancake recipe.

At the convention the nutritionist had a recipe for chicken pancakes.  My first reaction was, GROSS!  Well when we arrived home I had this huge zucchini that had been growing for two weeks.  What was I gonna do with it?  Well they love zucchini bread maybe zucchini pancakes?  So I have learned that all you really need for pancakes is some wet ingredients with some dry ingredients to make the thickness of the batter you like.  So I took my basic pancake recipe and added zucchini plus a banana blended in the Vitamix toss in a little cinnamon.  To my surprise they all loved it including my husband who is not a huge pancake fan.  Success, he thinks he is getting a pancake but he is getting the nutrition.

My youngest is a granola bar fan, that would be his meal choice.  I am trying really hard to limit him to two per day.  That is all he wanted for lunch so I convinced him a pancake would be good.  [1 egg, applesauce, oatmeal, a little flour to thicken the batter]  He gets a pancake, which he loved, and I get him more nutrients.  Success again.

Besides from the mention of “chicken pancakes” the other thing we really learned at the convention was to move our expectations into our child’s world.  Often times we forget our child’s feelings and try and move them into our world…get them to do what we want.  It should not be about bribing them to do what we want or rewarding them for going to the store or taking a nap.  If he wants to play trains then we find the train tracks on the way to the store.  It is a win-win not that constant win-lose battle.  I know I would not have thought about this without someone talking about chicken pancakes [I still have not tried :)] but am so glad I could think outside that box and into my child’s world making our world together a happier one.

By the way those waffles he is eating every morning this week are zucchini-banana waffles.  🙂

Kiss the M & M’s Goodbye

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The first thing that I changed to help change my son’s behavior problems was to eliminate red 40.  You have to really pay attention to labels because it shows up sometimes in places you don’t expect.

My mom was actually the one to suggest it.  She had parents over the years of teaching tell her about it affecting their kids.  I had thought my son had some sort of allergy or reaction to something he would eat but could never pin point it.  He would be fine and then all of a sudden jumping from couch to couch which really doesn’t go over well at Grandma’s!

It has been two years since we removed red 40 out of his diet.  I admit it was hard at first so I would let it slide and for something special or a party…oh, a little won’t hurt.  They have a lot of birthday celebrations in Kindergarten!  It got to the point with in five minutes of getting off the bus I would ask “Who’s birthday was it?”  The absolute worst day VALENTINE’S DAY!  We should just rename it to RED 40 day.  [It is not the sugar that make kids crazy…it is the food dyes!]

Last spring, the end of Kinder, he kept coming down with these ear infections.  We could not figure it out…it was constant ear infection but nothing the doctor’s would treat.  The treatment was Sudafed which has red 40, aahh!  It was the second Ninja Turtle birthday party that solved the mystery.  Blue 1 and Blue 2 is worse than red 40…it was actually causing ear infections.  We had been in this vicious cycle of blue dyes causing infections which needed meds to clear that make him feel yucky and have out of control behaviors.

This was pretty much the breaking point where my family would become a dye free home.  We still have those lingering Marshmallows I don’t want to just throw away but I do not support the food dye industry anymore!  We have also notice after about two weeks of being off all food dyes we feel better and don’t even want the nasty foods we believe have addicting dyes in them.  The final boot on the food dyes came at the Autism convention this summer; every speaker touched on eliminating food dyes.

It takes some training your kids especially when they are out at parties but they can learn.  Once you eliminate it they wont even complain because they feel better without the chemicals.  Even my 2 1/2 year old gets it makes him feel yucky.  The six year old informed the dentist that he could not have the toothpaste and requested an alternative without dyes.  Now that is something for a mamma to be proud off!

My Boys

It has been a while since I wrote.  I started my writing business because I loved writing and my young children gave me so many ideas.  I also had things I wanted to share with them like my time in the US Coast Guard but could not find a book that really shared the things they would be interested in learning, so I wrote and published one to share with them.  Now my oldest son’s favorite thing is his Coast Guard Lego set!

I started this blog with the hope of sharing some of our experiences with our son’s Asperger’s.  I was hoping to write regularly teaching all the things we learn and sharing experiences.  Our house went thru a lot of changes and I just did not have time for writing.  As the dust has settled I am ready to share and  have so much to share.  A year ago we were really just starting to understand the diagnosis…now we have so much to share.

Our oldest son was diagnosed with Asperger’s at the age of four.  He had a lot of behavior problems that resulted mainly from sensory issues.  His other struggles are social.  It is honestly hard for me to remember because he is a totally different kid now.  He completed 24 weeks of occupational therapy, has a home therapy room, and he is a great kid now.  He has learned so much about what makes him feel better and what makes him feel yucky it is a totally new world for him.  He told the dentist he could not have the toothpaste because it has red 40 and blue 1 and asked for a substitution.

My youngest son, our baby, in so many ways is opposite of his brother.  At 20 months the only expressive language he used was “NO.”  He had never cried for a diaper change, never asked for food or drink, just would not communicate verbally or non-verbally.  At first I thought I was over worried since his brother started talking at 7 months.  We looked and looked for therapy nothing was available; he is still on a waiting list.  He had a beautiful voice when he would talk but it was on his terms never to communicate, never imitate, and certainly not on demand even if he did want the water or snack.

I talked to a friend that was and audiologist she said don’t use categories.  She also said you will have to teach him what I’m gonna call the “threes” a dog in person, a dog in a photo, and drawing of the dog.  She also checked his hearing which was fine.  We had just figured out an allergy problem so she said he may just catch up if he was not hearing well with all the infections.  This was a very challenging time.  I had never taught my older two to talk, they just picked it up.

After about a week of no categories and lots of threes talk he used his first word “CUP!”  We found a college student who was wanting to go into speech therapy to work with him.  It was so great having her, he slowly got more and more words and started using them to express his needs.  If he was in a good mood he would sometimes imitate.  Cup meant he needed a drink and bar meant he was hungry, granola bars were his favorite.

The biggest change came when we figured out the other allergy.  I should have known earlier but the doctors kept telling me no he was not allergic to milk.  He had been really sick for about a week.  All he would eat were his bars .  We had taken milk away but it would get better for a while then he would get worse again.  It for some reason just clicked and I checked the bars ingredients, the only thing he had really eaten, they contained whey.  What is whey?  A protein that is contained in the liquid portion of milk a byproduct of making cheese that is waste…except…they put it in LOTS of other things in really high concentrations!  It has been six weeks since we eliminated ALL milk except cheese.  He is a talking machine!!  He is a completely different kid.  This morning for the first time he told me he was hungry!!

We had the amazing experience of attending the Autism and Asperger’s Conference in Salt Lake City, UT this summer.  We learned so much and confirmed so many things we had done with our boys to see huge improvements.  There is so much to share.  Little things can make a big difference but you are not likely to hear about them at the doctors.  I already had the joy of sharing this story with one friend that has seen positive changes in her little guy.  What a blessing!