To Sleep or Not to Sleep That is the Question?

From the time Ash was born she didn't sleep. She seemed to have an internal clock that would wake me three times a night at the exact same time each night. When she woke she often would take half an hour to settle and go back to sleep. Sleep deprived and homeschooling my boys I felt myself struggling through each day. I was desperate to find a way to get Ash to sleep.

When she was three years old the solution finally came in the form of a sound machine. On the first night I turned it on she slept through the night for the first time in her life. I joyfully celebrated what I thought would be the end of sleep deprivation and for six months I slept like a log.

Around the time she was 3 1/2 the sound machine effect was gone and we were back into the same vicious cycle of her waking three times a night again. I thought about why the sound machine no longer worked and I began to realize I had a child who needed extra auditory input. I began playing stories on discs on a CD player I put next to her bed and she started to sleep again as long as the sound machine was playing as well.

This summer this also began to no longer work and I refused to put anymore sound into her bedroom. I needed another solution to get this child to sleep. She also seemed to not need much sleep. It didn't matter what time I put her to bed she would still be laying awake in bed until 11:00 pm. Fortunately she never has been a child who gets up once you put her in bed.

I talked to her doctor about my challenges with her around sleep. She recommended that I give her melatonin because many kids with autism don't produce enough of this naturally occurring substance on their own.

I tried giving her a small tablet of melatonin on two different nights and she was bouncing off the walls and couldn't get to sleep. I refused to give her anymore because it seemed to be making her hyper and not sleepy. I spoke to a friend about it and she explained that because kids with autism often have digestive and absorption problems a tablet was not a good thing to be giving her. She suggested I try a sub-lingual form of melatonin.

Two nights ago I gave her 1mg of sub-lingual melatonin and within fifteen minutes she was fast asleep. Last night I gave her the same amount and she feel asleep in my arms within five minutes. I held her close and watched her sleep without any sound except the beating of my heart.

Bad Parent Syndrome

Bad Parent Syndrome

In trying to get a diagnosis and help for my children I ended up also under the scrutiny of the different places I sought help from. It seems if you have special needs children people assume it must be because of something you are doing. I thought our world had moved past the ignorance of thinking kids had autism because of refrigerator mom’s but in many ways much of society is stuck in ignorance.

I had a teacher tell my son that if he didn’t watch so much television his brain would have developed properly and he wouldn’t have Aspergers. Little did she know that he didn’t like watching television. He found television too intense a form of media. She made an assumption based on her own beliefs and applied it to him.

The same teacher told him that she had watched a show on television that suggested the number of kids with autism was on the rise because of the lack of physical exercise. She said she believed that based on the information that he could get rid of his autism through exercise.

That afternoon he ran nonstop, until he became ill. I asked him why he had pushed himself so hard and he told me what she had said. He said “Mom I thought maybe I could make it go away.” I went on line and watched the show she had watched. What I saw didn’t match with what she told him. She had let her judgments and pre-conceived notions filter that television program in an inappropriate way.

When I spoke to the teacher she admitted that she had said these things to him. She said she thought he shouldn't have taken what she had said so literally. I reminded her that as a qualified resource teacher she should be aware of the literal interpretation of language by kids on the spectrum.

I also ended up being investigated by CAS because of someone lack of understanding of Ash’s meltdowns and behaviour. Children on the spectrum have meltdowns and behavior that is different from other kids. Their meltdowns have nothing to do with bad parenting. The child is feeling over stimulated and needs to vent and they often can’t control themselves during these times.

Parents of special needs children have to work harder than any other parent. Their children have more appointments, more learning and dietary challenges, and require more assistance for daily living. Their children may not behave the way everyone expects but that doesn’t mean the parent hasn’t put the effort in. I have babysitters who have come to my house and after a few hours of babysitting wonder how I do what I do.

The Bible teaches that one should take the log out of their own eye before they comment on the speck in their friends eye. It has been my experience that the logs have caused blindness in many individuals.

Diet

I found it hard to believe how much of an impact diet had on our children. Tim was in kindergarten when I placed the kids on a gluten free cassein free diet. Two weeks after implementing the diet my son's teacher said "What are you doing differently with Tim? What ever you are doing keep it up. He is like a different kid. He seems to be less reactive to situations in the classroom and is better able to sit still.

Cach had ongoing problems with stomach pains prior to placing him on the diet. Within a week the pains disappeared and he made more of an effort to connect with people.

For Ash the diet is essential. Prior to placing her on the diet she would have meltdowns sometimes lasting for up to two hours. She seemed in pain and unable to express herself. She would hit and kick us for no apparent reason. After putting her on the diet she became calmer and more relaxed for several months.

We began to eat more rice and rice products while on the gluten free diet. Within a year of starting the diet the old Ash came back and this time her meltdowns turned into daily occurrences. The meltdowns were exhausting to everyone in the family. I just wanted my calm child back. Some how I needed to find her. I took her for allergy testing and discovered that she was allergic to rice. We eliminated rice from her diet and she became a different child.

Prior to this elimination she was pretty much nonverbal at the age of 3. Suddenly her language came in a flood of words and a vocabulary closer to a five year old. We could not believe the difference.

Recently we had a toddler over at our house and when the toddler didn't talk Ash started to cry and scream. I didn't know what was troubling her. When I calmed her down she said, "Mom I remember when I couldn't speak and it scares me that she can't speak because it reminds me of that time and I don't want to go back there again." How many kids with Autism feel trapped in a world where they can't speak? For some of these kids diet would make no difference. For others maybe it would open up a whole new world of possibilities.

Over the past few months Ash started having meltdowns again. This time they weren't as frequent and we were able to determine the cause before things became out of control again. We noticed anytime Ash ate grains of any sort including corn and starches she would cry and complain of a stomach ache. If it was a food she had eaten a lot of the meltdowns would come.

I read a book called "Breaking the Vicious Cycle Intestinal Health Through Diet" by Elaine Gottschall and learned that for some kids on the spectrum some diets might work for a while and then they loose their effect and the behaviours come back. She recommended a Specific Carbohydrate Diet and claims that this diet has the ability to heal the intestines of children with autism within two years and for many kids they can eat anything with no ill effects if they strictly maintain the diet.

We have been trying this diet with Ash and recently she told us that she use to have pains in her stomach every day but now they are gone. She said that if she has even the slightest bit of something she shouldn't have the pain comes back again. Our boys have reported similar results.

I read an article in an Autism magazine and it said that kids with Autism have leaky guts. It said that for kids on the spectrum when the gluten leaks through the gut and enters the blood stream it has the same effect as opium. It claims this is why so many children on the spectrum are addicted to those foods you know they should not have. Reading this article made me be very cautious over what I feed my children. I don't want to feed them anything that would have a drug like effect.

Most kids on the spectrum love their carbohydrates. For kids who are fussy eaters who crave something sweet try placing 2 cups of any frozen fruit in a blender with 1 banana and blend it. Put it in a bowl and call it ice cream. I serve my kids this "ice cream" for breakfast sometimes. What kids doesn't like ice cream any time of the day.

They Will Look You in the Eye

I am the mother of three children who have been diagnosed with an autism spectrum disorder. Some days life in our home can be challenging with trying to meet the needs of my children. The children are all educated at home. The advantage of the children being at home is they are better able to learn the social and life skills they will need later on. There is a misconception that children on the spectrum need to be in schools so they can be "socialized". This leads many parents to make decision that may not be right for their child.

The reality is that most children on the spectrum will take longer than neuro typical children to learn social skills. We place them in classrooms where they are surrounded by other children who have inappropriate social skills where jargon and sarcasm abounds. This leads these children to be confused.

Children on the spectrum enjoy being with adults and learn appropriate social skills from adults. Our children will grow up and become adults and will spend a larger portion of their life as an adult and not a child. So why do we place them in situations that are not ideal for them to ultimately learn what they need for life.

It is my belief that kids on the spectrum should if at all possible be educated at home. They should be surrounded by loving caring adults who will support them and teach them life skills. The adults must create opportunities in loving well supervised social situations for them to interact with other children.

Most people are amazed when I tell them my kids all have Aspergers because they are each socially appropriate and they will look you in the eye.