Speech Delay Doesn't Always Mean Autism

This post is to help relieve some of the paranoia associated with speech delay. Just because your child is delayed in speech, it does not mean that they are either mentally retarded or that they have autism.

Everyone is familiar with the story of Albert Einstein. He had speech delays and problems as a child. He also almost flunked out of school because he was interested in only math and not the other subjects. It's important to put things in perspective. You have to look at the entire child and not just one aspect. The biggest issue I have with some parents and society as a whole is that they expect kids to excel in ALL areas. This is an unfair expectation. Not all of us excel at everything. It's part of what makes this world an interesting place.

When my oldest was three and still could not speak in sentences I was so worried. He barely could communicate and it was so frustrating. I ended up taking him to a Speech Therapy clinic and paid a LOT of money. Unfortunately, I did not know about Early Intervention Services and so I missed out on the opportunity. It is so important to find out what is available in your area. There are numerous services available and usually it is not only for low-income families.

Let me explain what speech therapy is all about. Many people are under the impression that it is only about sounds and being able to physically talk. However, this is only a small part of it. In speech therapy they teach how to communicate. They teach concepts and how to follow directions. Depending on the age of the child, they work on their weaknesses and help develop the confidence needed for success in school. If they are a good speech therapist you will find that they will also teach you things you can do at home to help your child. They are full of information and tips that can supplement the sessions. Some of the tips I was given were: 1) make your child at least attempt to speak before giving them what they want, 2) praise your child if they make ANY attempt to talk, 3) at a young age you can teach them sign language and animal sounds, 4) use descriptive words and don't use "baby talk" when speaking to your child. Those were just a handful of suggestions I received. Don't be afraid to test you child. It's better to know and the earlier the better.

What are the warning signs that you should look out for? How do you know if they are just "late bloomers" or if they truly have a problem. The biggest indicator for me was the "frustration meter". If a child is getting frustrated and anxious because they can't communicate then you need to take action. Sometimes it is so hard to tell the difference between a child who is just stubborn or lazy and doesn't want to talk, versus a child who truly cannot communicate their needs or wants. I was hoping with each of my children that they would somehow catch up on their own and that I wouldn't need to intervene. However, my oldest three required intervention and they all were ready by the time they entered school.

I am struggling right now with my two year old because he is so stubborn. Of course, since all my children have required speech therapy, I almost expect him to need it too. I wish I knew what to do. I just don't want to be paranoid and not to mention that the process is something that takes a lot of time and effort. One of the hardest things for me is that he is so far advanced compared to my other three kids. He has been tested for milestones (which includes speech) at his school and they said he is doing great. My gut tells me that he is fine, but my mind keeps worrying. This is when I am reminded about how healing this blog is for me. I don't pretend to know all the answers. I just hope to share my journey with you, and if our roads meet at some points along the way then we can compare notes.

Keeping a watchful eye on your child's development is crucial. It is also a good thing to have others help you in the process. Sometimes other people, especially teachers, might notice something that you had not thought of. So far, I have not noticed my two year-old to be delayed enough to have him tested. I just know (from experience) that he wouldn't qualify for the Early Intervention Program because he is not delayed enough. They recently lowered the standards (which is definitely not a good thing). He has a great vocabulary (too many words to count)and he can follow directions. He also is doing great at school and so that reassures me that he is doing okay for now. At his school they test for developmental milestones and he has either met or exceeded all areas. I continue to track his progress through checklists and milestone information. This is a great one I found recently and it's in PDF format so you can print it off if you'd like: http://www.deforest.k12.wi.us/files/EPES%20PDFs/Sue%20Miller%20pdfs/SLP_Brochure_small.pdf
Keep in mind that the sites that are geared towards advertising for speech therapy services will have more stringent and expanded lists. It's been my experience that the simpler the list, the better to keep track of. I will definitely keep you updated on my baby's progress as time goes on.

It's important to know the warning signs to look out for. Some of the warning signs that I noticed with my own children were: they cannot follow simple directions, they seem as if they don't hear you, they don't respond to their name being called, they don't know the names of members of their family, their vocabulary is very low or else they just repeat words when they hear them,they have problems playing with kids their age because of the communication deficit, and lastly you (the parent) cannot understand your child most of the time. That last one is a big tip-off. If YOU can't understand your child, then you know that others cannot understand him. That is crucial in school, social settings, and life in general.

Speech delay often leads to social delays. That is why I wanted to post this. A lot of parents worry about autism at this point. There are many factors that you have to look at in order to consider autism. It's not just a simple speech deficit. If only it were that easy! Think about this... if you cannot communicate then you can't learn to share, make friends, take turns, or learn vital social skills. If left untreated, a child who can't communicate will often suffer from depression, low self-esteem, and have many other problems. It's a vicious cycle. My advice is to get your child tested if you suspect they have speech delays. One thing I have been advised to do is check their hearing as well. Sometimes they might have fluid in the ear and that could muffle sounds and make it difficult for them to hear. Also, there are numerous websites that offer screening tools for parents. Here is a good one I found (just click on the appropriate age): http://www.nidcd.nih.gov/health/voice/speechandlanguage.asp#mychild

Believe me, I understand your concern when it comes to testing and such. I also know the stress involved in having to take your child and the hours of waiting and dealing with siblings. It's just better to know and have the reassurance. I've had people ask me, "how do you know that they wouldn't have just learned to speak eventually anyway?" Well... my answer is that I DON'T know for sure, but I DO know that if it weren't for speech therapy I wouldn't have found out my daughter had Wilson's Disease and that my #2 had PDD. That in itself was worth all the trouble for me.
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Without communication we wouldn't have
love. Without love we wouldn't have
humanity. Without humanity we wouldn't
have life, but rather a simple existence
built upon needs and wants alone.
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Nontraditional Mommy Answers

There's a difference between traditional thought, medicine, and just good old fashioned common sense. How many of us still believe that you can scare someone out of having hiccups? How many of us have put our crying babies on top of a dryer to soothe them? These are definitely things that aren't taught in medical school, but as mothers we just know they work. I thought it would be fun to share some of the things that have worked for me and others. If any of you have other ideas.... please share away!!

When my oldest was a newborn he had difficulty getting to sleep at night. In retrospect I think he got days and nights mixed up. He would sleep most of the day and then want to stay up during the night. When I had reached a point where I could not stand it anymore, one of my friends suggested that I take him out for a ride. She claimed that it worked for her baby every time. I was desperate for sleep, so I begged my dear husband to take the baby out for a "ride" at around 10:30pm. He obliged. When he came back my baby was sound asleep. I dared not move him. So... I did what any sleep-deprived rational mother would do... I left him in the car seat. He slept the entire night!!

At the time my oldest was born, it was standard practice to lay the babies on their backs. It was supposed to help prevent SIDS. Since it was my first baby, I was very paranoid about this. The only time I would place him on his tummy was when we played during the day. I started noticing that he not only had a bald spot on the back of his head, but his head was flattened. I freaked out and took him to the doctor. I was worried that he would have brain damage or something. The doctor laughed and told me that there was an epidemic of flat heads because they lay on their backs and the skull is still so soft at this point. He told me not to worry and reassured me that his head would be okay. However, I have to admit that he looked so weird and I was still worried. At about this time, he started to roll over in the crib. That kept me busy. I would roll him back and he would roll over to his tummy while sleeping. One day my mother came to visit and she told me, "why don't you just let him sleep on his tummy?" I immediately explained how sleeping on his back would prevent SIDS and that the doctor told me not to worry about the flat head. She explained that every few years they change things. When I was born my mom was told to put me on my tummy because they were afraid of babies choking on their vomit. Then it changed to the side because they worried about blankets covering the face. When I got to thinking about it, I realized how silly it was. I started to let my baby stay on his tummy if he rolled over and he not only slept better, but his flat head went away. (Thanks mom!!)

Teething is always such a hard time for moms. I remember how bad ALL my children teethed and how long it seemed to last. Unfortunately, the things doctors tell you to do don't always work. I was always told to use cold teething rings. It was supposed to help relieve the pain. However, that seemed to make things worse for my babies. They would suck and then start to scream. I imagine they probably weren't expecting the cold sensation. One of the quickest and easiest solutions for me was homeopathic solutions. I purchased these little pellets (my mom used them with me) at Wal-Mart and they worked! They have numerous brands and I am not sure which kind they have available these days, but I am sure there are probably even more now. Also, I have already mentioned how one of my friends gave me some chamomile capsules that you just squirt into the baby's mouth. It's liquid and they just swallow it. It helped my baby calm down. Since then, I have found numerous products at our herb shop. Just be savvy and make sure to look at the active ingredients. Just because it's sold at an herb shop doesn't mean it's completely safe.

All of my babies slept through the night at an early age. It wasn't any trick I did or herb I gave them. I basically put them in their own bed by the time they were two months. My only exception was my #4 because we had problems with his feeding when he was born and he ended up in the hospital. It took a while for us to get into a normal routine, and I ended up leaving him in my room for a little longer due to the crazy feeding schedule we had to do. I learned that sometimes babies just wake up in the middle of the night and it's completely normal. They aren't hungry or wet. If you wait a while (at least a few minutes) they will usually calm themselves down and go back to sleep. That is a good thing. If they continued to cry then I would go and either pick them up and hold them and love on them, or I would just pat them on the bottom and rub their back. After a while, my visits became less and less frequent until they learned to calm themselves down. I know a lot of friends who like their babies to stay in the room while they are nursing. I understand the dilemma. It IS a pain having to get out of bed and nurse. However, you would be surprised how much better you and the baby will sleep given the chance. (Of course, this advice is only for those who wish for their babies to sleep through the night. If you do fine with the baby in bed with you and/or beside you in a co-sleeper then my hat goes off to you!!)

The last issue I want to talk about is when do you know your baby is sick? When I was a new mom I took my baby in for EVERYTHING!! I think most new moms do. Now that I have four kids, I only take them if they have had stomach issues for more than a couple days, fever that persists and/or won't go down, green drainage coming out of nose, and respiratory issues such as pneumonia and bronchitis (characterized by wheezing and/or coughing). Everything else pretty much has a solution that can be done at home. Every new mom should invest in a humidifier!! They are wonderful. They help in the wintertime when the air is dry and during the hot summer months when allergies are rampant. Another thing that I find useful is gingerale. This is perfect for when your child is nauseous, feeling weak, or if you are worried about dehydration. Chicken noodle soup is also a great "medicine" and they have actually done studies on it. You know what they say, "starve a fever, feed a cold"... that pretty much sums it up. Sometimes kids just need to lay down and get rest. If you pump them up with tylenol then they will think they are better and they won't let their bodies heal. They will overdo it and then take longer to get well. If your child is running a low-grade fever there are many options. They don't recommend doing alcohol anymore and for good reason. However, I still believe in giving baths (not too cold) and undressing them if necessary. Those are some things that have worked for me.

I hope some of you will find something useful. I hope to hear from you all with more ideas. I wish I knew how to do a "topic link" so that people can post ideas for everyone to see. I am still new at this blogging thing... Perhaps one day I will figure it out.
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Wisdom is knowing that truth can be
relative.
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The Vaccine Dilemma: Prepare From the Start

I looked up the definition of "dilemma" and found it to mean: a situation requiring a choice between equally undesirable alternatives. I thought it was the perfect adjective to describe the choice parents have to make concerning vaccines. Do we vaccinate and pray that our child has no adverse reaction or even die ..... or do we choose not to vaccinate and pray that our child does not end up with a horrible disease? Hmmm? However, I have learned that there IS another alternative.

My heart goes out to new mothers who have to make that decision. They are often made to feel ignorant and selfish when trying to voice their opinions or concerns. It goes farther than the vaccine issue. I know from experience that there is STILL opposition in breastfeeding among the medical community. There are some doctors that insist on a new mother (who is exhausted and is struggling) to bring their baby to the office every week and have a weight check "just to make sure" that the baby is getting enough milk when the mom has decided to breastfeed. At the hospital some nurses are not as supportive as they should. I remember when I had my first baby they gave me a "nursing support" diaper bag with FORMULA inside "just in case" I needed it!!! Anyone who has nursed knows that there are times in the beginning when you just beg for a bottle just once. However, chances are that if you give the baby a bottle then you will likely do it again....then you will likely mess up your milk supply (unless you are seasoned and know how to do it properly). It's not exactly what a new mother needs for "support".

What prompted me to write this post was numerous friends and acquaintances who are either pregnant or have newborn babies have approached me about this subject. They just don't know how to stand up to doctors. I wish I could go to the office with them. It just takes a couple times and you learn how to deal with their looks of disapproval and words of disdain. I have to warn you that you will feel like dirt the first time you try to "discuss" vaccines with your pediatrician. They will give you all kinds of statistics and say that there is no evidence that vaccines cause injury. However, when you bring your child in to be vaccinated they won't hesitate to pull out the release form for you to sign basically stating that they are released from all liability resulting from the vaccine....and they can't guarantee nothing will happen...AND basically they can't be sued if something does. You would have to rely on the "vaccine compensation" program and it's there for that purpose.

Let's discuss the vaccine compensation program for a second. Theoretically it's there for parents in case there is an adverse reaction after a vaccine is administered. If your child has a reaction immediately following the vaccine then your case is probably easier to prove. However, if you don't notice the reaction or if it's not reported within their two-month "window" then it will probably be a lot harder to prove. You will also have to have documentation of any "reaction" or else they will say you haven't proved any "damages" and you're out of luck. Don't count on the doctor to help you either. They will likely not remember and if it's not in their records then there is nothing they can do. I have already discussed the things you must look out for in a previous post so I urge you to read it if you haven't already. It's entitled: "What do I Really Think About Vaccines" and it was posted on Sept. 26th.

Most parents are under the impression that they either have to vaccinate according to schedule or not vaccinate at all. That is not the case. The laws vary from state to state, but if you can get a Religious/Philosophical Exemption then that is your best bet. You can write down which vaccines you don't want your child to get and it doesn't have to be an all or none proposition. It will also protect you against any other vaccines that might come up in the future. Right now the HPV Vaccine is one that is very controversial and I am sure many more will follow.

I have also discussed vaccinating on a different schedule than the CDC suggests. Let me explain to you why the CDC suggests the current mandated schedule. There is a lot of money invested in vaccines. However, there is also another dilemma. The government wants to make sure that low-income families and those that are more prone to drug abuse or neglect are covered. That is why Hepatitis B vaccine is administered to newborn babies, for example. The government knows that the majority of American mothers are not going to have Hepatitis B, but because there are those FEW people that might then they want to make sure that the vaccine is covered under the Federal guidelines and keep babies from being affected. The irony of it all though is that we are potentially harming millions of babies in order to "protect" the minority. Since the government can't "discriminate" then they have to mandate it. Does that make sense to you?

Another example is the flu shot. I was shocked when I read that in children five and younger the flu shot did not reduce the numbers of hospitalizations. This is according to the CDC!!! So why are pediatricians pushing for it? Makes no senses to me. Read more about it: http://www.nlm.nih.gov/medlineplus/news/fullstory_70107.html
Parents need to question the need for certain vaccines and the timing for sure. Why do twelve year-old girls need the HPV vaccine? Because in low-income families and minority groups there is a higher incidence of teenage pregnancy and sex. I heard a doctor say once on television that the government has to mandate certain vaccines so that it can be available to low-income families. In other words, so that they can go to the County Health Department and have tax dollars pay for their vaccines. That's it in a nutshell.

This is a wonderful website that is full of information on vaccines and VAERS and anything else you can think of. http://www.909shot.com/Issues/Intro_Message.htm I urge you to visit it. I found answers to a lot of questions. It can give you the ammunition you need to face doctors.

If you are pregnant then begin by making a labor plan that includes what vaccines, if any, you want your child to receive. I personally did not give my newborn a Hepatitis B shot and I made sure that they knew. I had my husband follow our baby after he was born, and we prevented the nurse from "accidentally" giving it to my baby. Another thing you might want to do is discuss your wishes with your baby's pediatrician. It's important that the doctor knows your beliefs and that they are respected. Throughout your pregnancy you were careful about what you ate, medicines you took, and what toxins you were exposed to... right? Well, this is just a continuation of that same care you took. Would you feed your newborn baby tap water not knowing what it's in it? Well...would you inject anything into your baby without knowing what is in it? Here is a good link showing all the things in vaccines: http://www.fda.gov/CBER/vaccine/thimerosal.htm It's from the FDA themselves. I did not make this up! (It is truly unbelievable the stuff they put in vaccines.)

After your child is born, the pediatrician will try to urge you to start vaccinating right away. I urge you to consider waiting at least a couple months. If you are breastfeeding then you can wait longer. Your breast milk will have all the antibodies and nutrients your baby needs. When you decide to start vaccinating, then work out a schedule that you feel comfortable with. I would advice starting with just one vaccine at a time. If you have a reaction there is no way you can know what caused it if you had multiple shots given. It could be as simple as an allergy to eggs for example, but how would you know?

Now...the following is based purely on MY theory and thought process, and I have no link(s) to back it up. I think that the most critical time is when the brain is developing. Much of the brain development occurs the first three years of a child's life and therefore are very important. That is when you should try and limit the amount of toxins and allergens they are exposed to. If your child is not going to be in a daycare environment or preschool then you really have more options. It's important that you prepare yourself mentally as well as physically for whatever decision you make. It helps to prepare from the very start. Write it down if you have to, discuss it with your spouse, and come prepared when approaching the subject with your pediatrician.

I wish you all the very best and hope that my information will help you. It's just a difficult subject for me to talk about because I often get angry. I have learned to remain focused and put my children first. That has given me more courage and conviction than anything else in the world.
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Courage comes from a place deep inside
the soul. It's locked away until you
find the key that unlocks that door.
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The Most Important Meal of the Day

We can go without lunch... We can go without dinner..... But heaven help us if we skip breakfast!! It is the most important meal of the day and it usually determines what kind of day we will have. When you have children with autism or ADHD it is critical that they get a healthy breakfast. I've had some requests for quick and easy ideas for breakfast and I thought I would post that now.

My most favorite thing to make is eggs. I have discovered an easy way of making them. All I do is take one egg and scramble it in a microwave-safe bowl. I then sprinkle whatever I like on top. Some suggestions are: REAL bacon bits, cheese, shredded or chopped-up ham, and left-over taco meat (trust me... it's good). You then microwave it for one minute and you have an instant omelet. I sometimes fold it over and top with salsa. It's definitely quick and easy.

My next favorite thing is pancakes. I make large batches and freeze them and put them in Ziploc bags. All you have to do is pop them in the microwave for a few seconds and you've got breakfast! You can add anything to them. I have even added fiber to them. You don't have to use sugary syrup either. If you are concerned about sugar intake then top them with preserves or apple butter. You can also make them into sandwiches. My oldest loves the McGriddle sandwiches from McDonald's and you can make your own at home. Also, there are low sugar syrups out there and they come in a variety of flavors.

Another thing we love to eat is oatmeal. I usually don't bother buying the packets. I make my own. You can make it with milk instead of water to make it creamier. I love to add cinnamon to mine and it's so good for you. There have been studies that show that just 1/2 a tsp. of cinnamon can lower your cholesterol and even help with regulating blood sugar in people with type 2 diabetes. (This is my source: http://www.healthdiaries.com/eatthis/10-health-benefits-of-cinnamon.html) One thing I used to do for one of my kids was put the oatmeal in a blender with a little bit of milk before cooking it. That will change the consistency to a creamier texture and you can even feed it to a baby that usually gags on it. My youngest loved it that way!

In the South we eat something called grits. It's basically a type of cooked coarsely ground cornmeal. We love to add cheese to ours. It's nice and salty and my kids all love it. They also sell them in various flavors and I love to try them out. My favorite is the cheddar cheese flavored kind. My kids love to eat them with eggs in the morning.

My kids LOVE to eat egg in a nest. It's basically a piece of toast with a hole cut out in the middle and you fry the egg inside on a skillet. You can make these ahead of time as well and freeze them. However, they don't take too long to make so I usually don't do that. Another thing along this line is french toast sticks. I dip wheat bread in egg that has been scrambled and has cinnamon sugar in it(coating both sides) and then just fry it up in a pan with butter. I sometimes sprinkle more cinnamon sugar once it's done. Then I cut the slice into four strips and give them different sauces such as syrup, preserves, cheese, or anything else to dip them in.

Of course, there is always the bacon, sausage patties, and links. I try not to feed them these things too often. My neurologist told me that nitrites and the preservatives in these things are not the best thing for brain development. We will have these usually when we are on vacation or if we go somewhere out to eat for breakfast. You CAN find some healthy alternatives out there such as Turkey bacon and sausage made of higher quality ingredients.

I hope this helped some of you. Maybe some of my ideas will inspire other ideas for you. It's hard when you have a child that has allergies or sensitivities. Trust me... I know. However, there are a lot of options out there for us. My daughter can't have chocolate, but we get carob for her. Also, if your child is allergic to eggs that can be a challenge but it's not impossible to substitute. I found this neat article online: http://vegetarian.about.com/od/vegetarianvegan101/f/eggsubstitute.htm (It discusses how you can replace eggs in recipes.) Hope this helps!
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Today's the day to try something new!
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Mistakes Made Equal Lessons Learned

You know what they say... hindsight is always 20/20. I have found that to be true in my life. Don't you wish sometimes that you could go back in time and do some things differently? I sure do. I think if we were wise we would at least consider the advice of older and more experienced people such as mothers and friends, we would not judge others, we would slow down, and more importantly we would learn from our mistakes.

I've wanted to do this for quite some time. It's always inspiring to hear other people's stories about mistakes and lessons learned from them. I wanted to explore some of the things I have learned from my mistakes. I am hoping that you can learn from them and that I can spare you all a little pain. Take it from me.... I am not even close to perfect and I don't dare even try to be. I just do the best that I can and try to learn something new each day.

Lesson #1: "Judge not, lest ye be judged" It's so easy to see faults in others, isn't it? However, I have found that usually we are most critical about things that we are deficient in. For example, before I had children I remember seeing a mother at the store with a child in a shopping cart yelling at the top of his lungs. He was screaming and throwing a tantrum. The mom was so angry that she actually lost her patience with him. I vividly remember thinking to myself, "I would never lose my patience like that with MY child." Well.... famous last words...I think I have lost my patience with EVERY ONE of my children! Patience is definitely something that I had to learn. It did not come easy for me. Luckily, I married a man that has patience enough to spare. Otherwise, I am not sure if my children would have survived toddlerhood. :)

Lesson #2: "There is more than one way to do things." I have to admit that I am a bit of a creature of habit. I tend to do things a certain way and don't usually deviate. I have a friend who has more kids than me and her house is always clean. I asked her what her secret was and she told me that her kids do most of the cleaning. I was floored! I couldn't believe that she actually let the kids clean. I have always considered my house to be my domain and I didn't want to relinquish it. Well... I tried letting the kids clean one day and I found myself watching how they did things and if they didn't do it like I would have done it, then I would go behind them and do it again. (I must have OCD.) Anyways, I have learned over the years that you must let things go sometimes. There is definitely more than one way to do things and you only make it harder on yourself when you insist on YOUR way. Needless to say, I let the kids do a lot more these days. I still go behind them in certain areas....but hey, I have come a loooong way.

Lesson #3: "Never say never." You don't know how many times I have said, "I will never do that." It's amazing how things change as you get older. When I was in my early twenties I thought I knew everything. I was stubborn and very hard headed. I remember once someone telling me that she was no longer feeding her kids milk. I thought I was going to pass out! How could she deny her kids the calcium that they needed was all I could think about. She tried to explain how she nursed them for a long time and so by the time she quit nursing they truly did not need the milk from a cow, which was made for a calf and not a human baby anyway. Well... this was such an alien concept for me. As you all know... I eventually came to find out that what she said was true. There are other and better ways of getting the calcium. So now I try not say never because you just never know.

Lesson #4: "Don't be afraid to give compliments." You know how many times I have seen a stranger wearing a beautiful outfit and thought to myself, "Wow, she looks so nice." Perhaps you have had an opportunity as well to give a compliment but didn't out of fear that the other person might find it weird or something. Well.. I had the neatest thing happen to me the other day. I was having one of those days and I have to say that I truly did not feel very pretty. I was at the cashier when all of a sudden this elderly woman came up to me and said, "You know I was meaning to tell you something when I passed by you in the isle. You are so pretty." That was one of the sweetest things I have ever experienced! I just looked at her and said, "You just made my day." I have to admit that I got a bit teary-eyed. Then she said, "I just didn't know if you would mind hearing that coming from me." I thought how sad it is that people can't just express their feelings that way without worrying about what others would think. I will definitely have to remember to be more mindful about giving compliments myself. You will never know the impact you may have.

Lesson #5: "Murphy's Law will get you every time." No matter what you think, no one is immune. Accidents happen no matter how careful you are. When my kids were younger I always carried a diaper bag. I would usually check it and make sure that it was stocked with supplies, change of clothes, and miscellaneous items. However, it never failed that the ONE time I forgot to check I would be out of diapers, wipes, or change of clothes. Of course, it would be on a day when my child would have a "blow-out" and I would end up having to continue running errands with a child in diapers instead of the cute outfit I dressed him in. It's funny how that happens in life. Just remember that it's all in the attitude. You don't know how many times I stressed about the little things. Don't fret and just remember that worse things could happen.

Lesson #6: The last lesson that I wish to share with you is probably the most important one and the reason that I am inspired to be an advocate and do this blog. It's definitely not my idea, but it's how I try to live my life.... "The Serenity Prayer: God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference." I wish that I knew then what I know now. There are so many things that mothers stress over that we cannot change. There are so many things we have no control over. However, there are also many things that we can do to make a difference. I stressed over some of the silliest things when I was a new mom. I did not realize my potential or the power that I had inside of me. It's not until you are hit with challenges and adversity that you realize how strong you truly are. I remember when I used to look at moms with four kids in awe. I couldn't imagine how they did it. Now... here I am with four kids and can't imagine my life any other way. Don't ever doubt your abilities. All it takes is desire and motivation to accomplish anything.
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Don't let fear of failure hinder
you from following your dreams.
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Finding Strength in Numbers

How do you find the strength to carry on and do what you have to do for the sake of your child? How do you find the words to say when you are challenged? Who do you turn to when things get rough? For me, I turn to my Heavenly Father first, my family second, my friends last. Without this support group I would not make it. There would be no way I could find the strength or the motivation I need to be a good mother.

No matter what your challenges are, it helps to have a support group. It can consist of one good friend or a group of friends and family. They are the people that you can turn to for help. They are the ones that are there with a shoulder to cry on. I feel so blessed to have a wonderful support group. Number one on my list is my sweet husband. I have a wonderful husband who loves me and has put up with me all these years. We are going to be celebrating our 16th year anniversary soon and I honestly don't know where the years went! It's unreal. However, when I look back on all the things we have had to endure then it hits me that we have been through a lot in those years. We have been able to grow together and I feel so lucky to have had him by my side through all the ups and downs of parenthood.

Friends are precious to me. I have some that I have known for most of my life. I have also met many wonderful people who have come and gone, but who have left a life-long impression in my heart. I have learned some valuable lessons that I will carry with me for the rest of my life. Some of those things I have shared with you all in my posts. I have always valued those who are older and wiser than me. It has always amazed me how many people limit their friendships to their small inner circles consisting of people their own age. I guess it's just a foreign concept for me since most of my closest friends are older than I am. Right now I have friends of all ages and all denominations. I have friends who have small families and others with large ones. I have groups of friends that share similar hobbies. Then I have those friends who understand what I go through because they have children with special needs.

The point I want to make is that it's important to surround yourself with people who uplift you and support you. Don't take it personal if someone doesn't want to be your friend once they meet your family with all its challenges. That has happened to me on numerous occasions. In my opinion, it's their loss not mine. My mother always told me, "it's better to be alone than in bad company." That is something that has stuck with me all these years. I would much rather have a couple of good friends than to have dozens who don't really care.

I have to admit that I get so excited each time I meet another mom who has a child like mine. My excitement comes from knowing that already we have a special bond. There is a special connection in knowing that she understands how I feel. I know that she won't judge me like other people would. There is also a mutual understanding that no matter what mistakes our children make it won't change our opinion about them or each other. That is something that noone could comprehend unless you were in our shoes. I also enjoy conversations we have and being able to hear someone say, "I understand" and know they mean it. It is truly priceless.

Another thing I have found is the online community. There are hundreds of thousands of families who are seeking others for support and understanding. There are chatrooms and blogs. There are also numerous forums where you can go and read what other parents are going through. You can post words of encouragement for others as well as post your own question or concern and receive invaluable information. This is one I found tonight: http://www.autism-pdd.net/forum/default.asp I went under google and typed, "autism forums" and had 350,000 results come up! That should tell you something.

One of my friends told me that there is a local support group for parents with children who have autism. She said they offer seminars and often have professionals come and speak on different topics. I have never attended a seminar and someday hope to. I was planning on attending one recently, but it was cancelled due to lack of registration. It was sponsored by our school and evidently it didn't get enough support. I think it's a shame. Hopefully, there will be another one offered soon. I will keep you posted.

The last thing I think is important to discuss is church and prayer. My faith has been my saving grace. There has been so many times when I have knelt in prayer pleading with God to help me. Reading scriptures and praying has helped me to not only cope with stress and discouragement, but also has given me the inspiration and the desire to do more for others. I know that my loving Heavenly Father has placed angels all around me all of my life. I will never forget the day when my daughter snuck out the front door when she was only two and couldn't yet talk. I was nine months pregnant and had laid down just for a second because I was literally exhausted. All of a sudden I felt a chill and felt an urgent need to check on my daughter. I looked all over the house and then when I realized she was not inside. I rushed out the front door. I literally ran down the street looking for my daughter. I was numb and had not yet felt the need to cry. When my neighbors saw me they all calmed me down and helped me look for her. I remember going back into my house and locking myself in the bathroom and pleading for the safe return of my daughter. It was Christmas eve and all I could think of was how horrific it would be if this would be the moment I would remember from now on. It had been twenty minutes and it felt like hours. When I went back outside to look for my daughter I heard others yelling out to me, "We found her......we found her... she's okay.....we found her!" I knew my prayer was answered. That was when I finally was able to feel again and I just sobbed!

I hope that you have the support that you need. If you don't, I urge you to find it. It doesn't matter if you have children with issues or not..... Every mother needs a support network. There is strength in numbers and I can testify that it makes all the difference. Get out and research what is available in your community. Go online and google forums. Surround yourself with friends who really care. Last, but definitely not least, there is strength in knowing that there is a greater force beyond comprehension that can lead and guide you if you would just kneel in prayer.
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And I say unto you, Ask, and it shall be
given you; seek, and ye shall find;
knock, and it shall be opened unto you
(Luke 11:9)
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The diet factor (Part II)

I truly need to write a book, don't I? I find myself getting deeper and deeper into these topics and my entries end up looking like a magazine article. If you only knew how many hours I have stressed about these things and how much effort I have put into digging for the truth. You would be amazed.

When you go to the doctor and ask for advice on what you can do to help your child who has either autism or ADD/ADHD there is not much they can offer except for drugs. In my opinion, drugs are for children that are at the point where the behavior is either self-destructive or can hurt others. What can you do for a child who has mild symptoms? What options are there for an autistic child who is at the high functioning level? These are questions that I had to figure out on my own.

The first line of defense or treatment should be diet change!! I cannot stress that enough. Everyone knows that certain foods cause problems for some kids. There are some symptoms that are obvious. For example, I fed my daughter orange juice when she was young and she broke out all over her face in welts. I waited for months to feed her orange juice again and when I did she broke out in welts again around her mouth. Now I know that she is definitely allergic to orange juice. She could outgrow it, but for now we avoid it. Other allergies, unfortunately, are NOT so obvious. Behavior change is more subtle. In my case, I tried to keep track of my #2's diet and eventually realized that when he had "pink milk" he would act differently. The strawberry syrup has Red dye #40. That is a big trigger for many kids. It can cause problems with hyperactivity, irritability, restlessness, and being able to sleep. I have to admit that it took me a few weeks of keeping track. The way we found out was I was reading about it online and then decided to stop giving him the syrup, and we immediately saw a change in his behavior. The hard part was I had to make sure, right? So...I gave him some pink milk to test my hypothesis and that day we definitely saw a change. That night he had trouble sleeping and the next day he did not have a good day. Darn the scientific method!!

What do you do when others won't support you or think you're nuts? That is a good question. It's a known fact that most mothers don't want their children to stand out unless it's for a good reason (such as intelligence and looks). So, I wish people would back off when mothers are just trying to do their job. It's also easy to get defensive when others question why you do what you do. The thing to remember is that as long as YOU remain calm and just explain it in a way that others can relate then you are less likely to get the backlash. For example, you can either say, "I am sorry, but Johnny can't have candy right now since it's a known fact that eating too much sugar causes hyperactivity in kids with autism".....or you can say, "Thanks for offering the candy, but Johnny is not allowed to have candy right now." Do you see how just changing a couple of words changes everything? Most mothers would not even question it and "Johnny" doesn't have to hear you defend your decision as a mother.

I think it's important to be consistent with diets. I have to admit that I get so lax with diets. The hardest time for me is when we are not home. I am sure it's that way for most mothers. If I give my children an inch they will take a yard when it comes to breaking rules. My husband is like a kid when it comes to bringing junk food home. Sometimes he will get "fun" cereal as well and then I feel like if we don't eat it then it is wasting food and money. Consequences of breaking diets can last for days. That is why if we do it, we have to take that into consideration. There is no easy answer to this dilemma, but just remember to try and be consistent as much as possible.

Another point I want to make is that some children are deficient in certain vitamins and nutrients. That is why my neurologist started my daughter on a supplement before we even had a diagnosis. He said that certain deficiencies can manifest in different ways. I thought that made perfect sense. I am definitely not a nutritionist and so I could see myself unknowingly feeding my family a diet lacking in something. Why can't doctors test children for this on a routine visit? In my opinion, I think that they should test children after they start solid foods. They could start at age 2 and then do it every six months during their routine visits until about age 4 and then every year after that. (Of course, I am talking about children who are having health problems or issues in development.) Again, this would be too easy. They would much rather wait and see or give drugs.

As years go on I see preventive medicine going down the drain. The pharmaceutical companies have too much money invested in their products and they are going to push doctors to give it to their patients for everything. There are so many alternatives to medicine out there and there are things parents can do without the help of the traditional medical community. The thing I want parents to know is that there is much more to health than meets the eye. Our bodies are a marvelous machine that can heal itself (if you will let it), can tell you when it's sick (if you will listen), and has greater potential than you can imagine (if you only have the faith).
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We live in a "gotta have it now" world
when it comes to everything. This
way of thinking will one day ruin our
health, destroy our planet, and end
everything that we call humanity.
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The diet factor (Part I)

I have done a lot of research on different diets out there that are supposed to help with ADD/ADHD and autism. There is so much information that it's almost overwhelming. However, the stories I have read have given me so much hope. I am determined to tell my story to whoever will listen.

As I have already discussed in a previous post, my oldest was diagnosed with ADHD at a young age. Medicines seemed to aggravate his condition and the side-effects were horrible. Unfortunately, our LAST resort should have been our first. We decided to try a special diet that I read in a book that was supposed to help with his symptoms. It was basically a low-carb diet. We also had to avoid red dye, processed foods, and artificial sweeteners. It truly wasn't a hard diet to follow. My son seemed to love the new food I was feeding him for breakfast and he enjoyed not having to take his medicine. He always hated having to swallow those nasty-tasting pills.

We noticed a change right away. We actually saw results faster than with the medicine. It was also a good change for our entire family. I think that processed foods are not good for anyone. When your diet consists mainly of processed foods, your brain is going to suffer no matter who you are. In our church we have what is called the "Word of Wisdom" which faithful members follow. It includes abstaining from tea, coffee, tobacco products, and eating meat sparingly. There is also counsel to exercise the body regularly, eat fruits in season, and wholesome herbs. In my opinion, this is the best "diet" in the world. It is unfortunately one that most people don't follow because of today's lifestyle and fast-paced world.

Let me give you a scenario.... You are a busy working mother who probably stayed up late working on household chores and perhaps catching up on some t.v. shows to wind down from a long day. You wake up and have to get your child ready so you can take him to daycare or school on your way to work. You either pull out some poptarts (the yummy sugary kind that your child loves) or else consider a more healthy breakfast of cold cereal. You decide on the cereal since at least you add milk. It can't be too bad. Then you get ready and pack the bags and drop your child off. You work your 8-hour shift and then decide that you are too tired to cook dinner tonight and so on your way home you grab some dinner at a local fast-food restaurant with a drive-through. You pick up your child and head home. Once home you plop yourself in front of a t.v. with your child and eat your dinner. You put your arm around him thinking that this is such a bonding experience. You give him a kiss on the head and continue to eat your MSG fat-filled hamburger with bacon, lettuce, and tomato.... while your child munches on some chicken nuggets, which consist mainly of fillers and parts, and french fries. Does this sound familiar? It has become a way of life for many people. It is also a contributing factor for a lot of behavioral and health problems in children. This is part of the "environmental factors" that many say contribute to ADD/ADHD and autism.

What did I do to help my child with autism? It was very similar to what I did with my oldest. I have eliminated artificial sweeteners and red dye. I restrict his sugar intake. The biggest thing I do is try to feed him 5 times a day. That is the best way to keep his sugar level steady. He gets breakfast. At school he gets a snack. They have lunch at noon. Then when he gets home I feed him a good snack such as a sandwich or fruit. We finish the day by eating dinner usually by 6pm. That gives him almost two hours to digest his food and get settled for the night. A consistent bedtime is important for our son. He does best when he gets a good night's sleep.

As you can see, these "special diets" are not very extreme. They are actually good for any kid. They are also good for the entire family. There is plenty of scientific evidence to show that they work. I am sure that any pediatrician would agree that those diets are valid.

Now....I am prepared to talk about the controversial one.... The casein/gluten-free diet. My pediatrician doesn't believe it works. He actually told me that it was just a coincidence! Imagine that... does it surprise you? Well, I am here to tell you that something happened after I started that diet with my daughter. We started with just the milk-free part. I thought it was too extreme to change to no milk and no wheat overnight. We started using soy milk and products. I was surprised at how easy the transition was for my family. Everyone loved the vanilla-flavored soy milk that I got. My daughter didn't love the soy cheese but she ate it. I started to pay more attention to the health food isle and I noticed a lot of products that were available. I also went to a natural health food store and was amazed at the products available. It became more obvious that I wasn't the only one following this "crazy" diet.

I did my research on this diet and found a lot of proof that it works. I found numerous doctors who believe in it and who have a good explanation. My neurologist had told me that in some kids milk turns into a morphine-like substance in the brain. This could explain why my daughter slept so much. I have to look at all possibilities when it comes to my daughter since she has a metabolic problem and there are a lot of factors involved. As I said before, my pediatrician did not give credit to the diet. He said it was a coincidence. He asked me if I took her off of it, and I said that eventually I did. He responded, "See...that tells you right there that it wasn't the diet!" Well... let me ask you all this: if you have child who is having trouble speaking and you begin speech therapy and they start speaking better, does that mean that the speech therapy worked? Or is it a coincidence? Is there any way to prove it? My answer is that there is no way to prove that speech therapy works. People could say that given time the child would have learned to speak...right? There is also no way to prove that this diet works. It just does!!! However, I do have to say that it doesn't work with all kids. I think it's because not all kids are affected by milk in the same way.

I could go into all the medical information about how the diet works. However, I think there is a doctor that explains it better than I ever could. I found him one day on "youtube". I must say that he does have a lab and so he does have some vested interest in "selling" his ideas. However, my neurologist also told me the same information and he was just a doctor... not a philanthropist. This is the link to the clip and I urge you to watch it. It's not very long and it is very informative: http://www.youtube.com/watch?v=w7op0m8BtmY
He explains delayed food allergies. He feels autism is an autoimmune disease. He thinks it's partly due to too many vaccines too soon. The target organs are the brain and the gut. He feels timing of vaccines is critical in some children. He doesn't think that vaccines should be one-size fits all. He feels it's critical to figure out the allergens that cause problems and he has a lab that can test for that. Early diagnosis and treatment before age of 3 is critical. That is why I think ALL parents of children with autism should be educated. The earlier they get started the better the chances. Dr. Dan explains that if there is a chance of autism then don't wait for a diagnosis that might not come until the age of 4 or 5. Start NOW! His site to find out more information on testing can be found at: www.sagemedlab.com
I am planning on trying to get that done with my son and I will try and keep you posted on what I find out and if I am successful. I am sure my doctor will not make it easy for me. I wish I still worked at the lab because I could easily have my children's blood drawn and do it myself. I think it would be a good thing to do that for all my children. There is still so much we don't know about food and the way it affects the brain. I just wish that someone had all the answers.
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I know the truth will one day come,
although it's already come for some.
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My new favorite book

I just finished reading "Louder Than Words" by Jenny McCarthy. It only took me two days to read the book. I know it's a short paperback, but when I have only a few minutes each day to read anything other than children's books....I think that's pretty good! Once I started reading I could not put the book down. I absorbed every word and looked forward to each new chapter. There are so many things that echoed my blog! I could not believe it! I actually told my dear husband that people are going to think I read the book and then started up this blog... hehe.... I am just glad to see that I am not the only one in the world who feels like it's their mission to educate and offer hope to parents.

**Disclaimer: The only negative thing about the book is her choice of "colorful" adjectives and language. I know she can be vulgar at times, but I didn't expect it to come out in her book. Just keep that in mind if you are planning on reading it. You might not want your child to get a hold of the book. Most of it was anger and frustration at the doctors who failed to listen to her. I can totally relate. There have been numerous times when I think I would have used more colorful language if I were not LDS. One of my friends told me I should start using my Spanish more often. Hey.... that's an idea.

The thing I liked most about this book is the way she presented the facts. She didn't interpret what was happening at the beginning. She basically laid out all the facts and what occurred, thus letting the readers come to their conclusions. Although her story was nothing like mine, I still saw some parallels and similarities. I especially related to how the doctors treated her. I hope people don't think that she has no respect for doctors. I think that she just had the worst luck when it came to her son's treatment. She wound up getting a lot of young doctors who were still doing their internships and were not experienced. She begged for a neurologist and it took days before she saw one. I know how frustrating it can be when you have a child who is suffering and the one person you feel can help is not available.

She winds up being visited by the "Mormon missionaries" throughout the book and I thought some of the stories were funny. She actually thanked the Mormon Church at the beginning of the book. I thought that was sweet. She is not a member of our church, but she has a great respect for it. She definitely makes that known.

I don't care who you are... when you read about a mother's turmoil and heartache because of the pain her child experiences you can't help but feel it too. I actually cried throughout some of the chapters because I could just envision what she was going through. I remember when my oldest child had his seizures when he was very young. I worried that he would have brain damage. They called them febrile seizures in his case too. To this day I wonder if he may have suffered from vaccine injury as well. We will never know. Unfortunately, that's what they call it whenever they don't have any other explanation. Who knows how many children are misdiagnosed?

The climax of the book for me was when she went back in time after the doctor told her that her son had autism, and she took the reader through the first couple years of her son's life. She explained some of his behaviors and quirks that later would validate the autism diagnosis. The hand flapping or "stimming" was something she thought was cute. Also his tip-toe walking was another sign. He had a very limited vocabulary and played with toys differently than other kids his age. He had an obsession with certain cartoons or toys. All these things later would bombard her mind as she put the pieces of the puzzle together. It was truly enlightening.

Jenny could not have picked a better title for her book. She explains that the bond with her child was something that went so deep that it was "beyond words" because she could feel his love. I think that's true with most mothers. When a baby smiles that first smile it just melts your heart. The baby doesn't have to say, "I love you mommy" because you just know. I also think that "beyond words" can have another meaning. It's beyond my comprehension how some doctors will not listen to mothers. It's beyond my comprehension how even though autism is on the rise the medical community refuses to seek answers. Their solution is to drug kids. It's so obvious. If there isn't a drug for what your child has... then you're out of luck. That's insane! There are so many options out there. Why can't they see that some of them actually work.

"Beyond Words" by Jenny McCarthy is definitely a book that I would recommend. It's not a "how-to" book on autism, but it is filled with invaluable information and resources. At the end of the book she lists special diets and different resources. She mentions DAN doctors and you need to read the book to find out who they are. I am definitely going to do my research and find the nearest one.
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I hope that those of you seeking answers
will find them. I pray that those of you
who have lost hope will endure. The road
will not be easy, but it will definitely
be worth it!
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To label or not to label? That is the question.

I think this post is long overdue. Numerous people have commented on how they are afraid to label their child. I have to admit that at one time I was among those numbers. The problem is that people fear that once you label a child then they have to carry that with them for the rest of their lives. Well.... if you are wrongly diagnosed then I agree that is a problem. However, if your child DOES have a legitimate condition then you need to weigh the pros and cons. I am prepared to discuss those with you.

I will start with the cons..... If you research online you will find numerous sources that discuss the negative effects of labeling on children's self esteem and potential. You will read warnings to parents and teachers about the way sometimes labels will change the way children see themselves. It often will also change the way teachers and parents treat children and their expectations. All of these things are legitimate concerns.

I have already discussed how some parents will actually use a diagnosis as an excuse not to parent. I have often seen people make excuses for their children without correcting them because of their condition. The other thing that is a shame is the wrongful use of diagnosis. I had one psychologist tell me that some people in medical school will try and get diagnosed with ADD/ADHD so that they can get the prescription Ritalin and be able to concentrate better for their exams. All it takes is answering the questions correctly on the questionnaire and they can get a diagnosis. Some parents do the same thing to use the drugs to lose weight. That one REALLY shocked me!! I have to admit that I ONCE considered trying out Ritalin (when we were having all the problems with my son) just to see how it made ME feel since my son couldn't talk and tell me. However, I could not do it.... I tried, but my gut told me not to do it. I am so glad that I listened. I am sure there are parents out there who are addicted to it.

Another con is that sometimes children are misdiagnosed. Once you get a certain diagnosis then the "plan of action" goes into effect and it's kind of hard to stop the domino effect that follows. There are so many things that parallel one another. What if you have a child who is "hyper" and also has food allergies? That could easily be diagnosed as ADHD. What about the child who is just a "late bloomer" and is diagnosed as PDD? There are many examples, but I think you get the idea.

Now, what about the pros? The most important thing, in my opinion, is getting treatment and services for your child. Once you have a label then you can get the help you need. Often times you can get free services that are offered at the public school level. Our state has "Early Intervention Services" and it was totally free and helped my children very much. Early intervention is key to helping a child reach their potential. It has been my personal experience that parental involvement in the process is also critical. For example, you can't expect a speech therapist to come to your home once a week or every other week and forget about it. I talked to mine and received valuable information and advice on things I could do in between sessions. I know that is why it worked for us.

Another thing that is helpful when labeling is that you can move forward. When you don't know what you're dealing with then it feels like you are in quicksand just being pulled downward. The harder you try to get out, the deeper you sink. That is exactly how I felt before getting a diagnosis with my #2. Moving forward means that you can now include other people and form a team on behalf of your child. You don't have to do it alone.

Lastly, labeling helps or makes it easier for others who come in contact with your child to understand (sometimes) their behavior. Instead of thinking that your child is being a spoiled bratt or that you are not doing your job as a parent, you can enlighten others to the fact and most people will have a general idea of what you're talking about. For example, today I took my children to gymnastics and ballet. One of the teachers approached me and told me that my #2 was not behaving today and that he would at times run around instead of staying where he was supposed to be. I strongly reprimanded my son (including not letting him have a "treat" after class while his siblings all got treats)... then I could see that there was more because the teacher just kept looking at me and then he said that he had slobbered or spit on the matt and that he just didn't know how to handle that behavior. He then asked me if he was ADD or what? I quickly said, "No...he's not.....BUT...he IS PDD..." He had a puzzled look on his face. I then continued, "Autism?" Then he quickly did an "Oh....I see....." and I explained to him that normally I was at my daughter's ballet section of the building, but that I would make sure I was around next time so that he could just flag me over whenever he misbehaved and we could put him in "time-out". He was happy with that. He was a young kid about sixteen or seventeen and as he turned and walked away I got to thinking about his mannerisms and the way he communicated with me, and I got the feeling that he was probably in the autism spectrum himself. I could tell he was extremely bright, but there was something kind of "off" about him. I can't exactly pinpoint it, but when you've been around it enough, you just know.

Now...what do I think about labeling? In my experience it's been a good thing. I have obtained invaluable help from it. I was able to get my oldest two children into a very good school because of it. I received free services from the state because of it. I feel my children have a better chance of leading a more normal life because of it. Also, I feel it has given me options that I didn't have before. Ironically, narrowing down their issues to a "label" has opened the doors to many possibilities that I had not thought of. Part of this has to do with the fact that I have been exposed to a lot of information that has changed the way I raise and take care of my children. For example, with my oldest I learned that he needed a diet that had less carbs and more protein. In essence, a more healthy diet. That was a positive impact on everyone in our family. When my daughter went to the neurologist who gave me a list of foods she should avoid such as red dye, artificial sweeteners, hot dogs, etc... It was definitely a positive thing for our family. Those are things we should ALL avoid anyway. Then with my #2, we realized that children in the autism spectrum need a more structured environment and consistent discipline. Who DOESN'T need more of that?

I know it's not an easy decision. It is one that can't be made in haste. First, make sure that your child has the proper diagnosis. Secondly, weigh all your options. Lastly, take advantage of all the resources available to you to help your child. Don't look at a label as the person your child is going to be.... look at it as one of your child's challenges that can be overcome.
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"Accept the challenges so that you can feel the
exhilaration of victory." ~ George S. Patton
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"Life's challenges are not supposed to paralyze
you, they're supposed to help you discover who
you are." ~ Bernice Johnson Reagon
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Mystery Diagnosis

I have had numerous people ask me what exactly happened to my daughter. Those who have known her for years can definitely see a change in her. It's a mystery and unfortunately is yet to be resolved on paper. However, I have my theories and I am prepared to explain what I think TRULY happened to my daughter.

When my daughter was born she was healthy and strong. She met all of the milestones on time and we did not have any reason to worry about her for the first 18 months of her life. She had great eye-contact and was very social. She also ate very well and slept like she should. I also remember her first words being directed towards her oldest brother (with whom she is still very close) and how sweet it was. I felt good about her progress.

Her language skills continued to progress. She was making more sounds and attempting to communicate. It was so cute listening to her. She liked her pacifier a lot and so I tried to limit her use of it so that she would not be hindered in any way. I read her lots of books and tried to spend as much time working on vocabulary and animal sounds. She was doing better than the boys and so I was optimistic that she would eventually talk.

I will never forget the day that I noticed something very odd. My daughter was a little over 18 months. I had placed her in a high chair in the kitchen and she seemed so content. She was sitting there for probably 15-20 minutes and I noticed her hands were turning kind of purple. Her feet were also a weird color. I touched them and they didn't feel cold. It definitely wasn't cold inside the house either. At first I just thought that perhaps she had been sitting there too long? I picked her up and held her for a few minutes. Her hands and feet eventually returned back to their normal color. A few days later I observed the same thing. She was sitting on the high chair and I noticed her hands were a weird color again. Also, this time I noticed her lips looking a bit different as well.

I decided it was time to call the doctor. I called the "Nurse's Line" and told them what I had observed. The first thing they asked was what I had fed her. I knew where they were going with this.... (No...she did not have orange nose or orange skin from the orange veggies I was feeding her at the time.) The nurse I spoke to told me that it was normal in babies to see the blue hands and/or feet since their circulatory systems are still developing. She continued and said that if they stayed that way then to give them a call, but if they returned back to normal then it was okay. I said, "Yeah... but she is 18 months...is that normal?" She reassured me it was. Of course, deep down in my gut I had a feeling it wasn't. It's interesting how the mind works. I had my doubts, but of course I wanted everything to be okay with her. So... I joined the "Denial Club" and went on my merry way.

At this time I started to notice that other kids her age were weaning their second naps. They were sleeping a lot less. My daughter would sleep a lot!! She would take about two naps a day and they were never less than two hours long. I remember a few times when she slept about six hours total and I mentioned it to my friends and they were shocked. I guess I had not realized that she was sleeping half the day away. They asked me if she was getting sick and I explained that it was normal for her to sleep that much. (Remember.... I was still in the "Denial Club" during all of this.) I began to take notice and started keeping track of her sleeping pattern.

We had begun potty-training and I was so excited. I had not been able to start potty-training before the age of three and so this was a first for me. I was thrilled to see that she could actually stay dry during naps and that she was showing an interest in going to the potty. However, she regressed and we were back to where we started. I tried everything I could to encourage her, but nothing worked. It was definitely frustrating.

By the time my daughter turned two it was obvious that she was lagging behind in her speech. Since my older two had to have speech therapy it wasn't shocking for me. I decided to wait just a few months to see if perhaps something would "click" in her. However, I didn't see any improvement and I could tell she was starting to get frustrated. Her social skills were also lacking and I saw a change in her. She started to act differently. I couldn't communicate with her and so we would have more outbursts and tantrums. I decided it was time to get her evaluated for Early Intervention and that's what we did.

She was evaluated and found to be more than 25% delayed and so she qualified for the program. They tried to test her hearing but she screamed so much that they couldn't do it. She was very sensitive to anyone touching her. She would "freak-out" whenever anyone wanted to look into her ears. (This was also when we found out that she was having optic seizures or "staring spells".) The lady that performed the evaluation suggested I take her to a neurologist. I am so glad that I listened to this "angel" of mine.

I was so excited because they came to my house and she didn't have to go to a daycare. At this time I was really paranoid about putting her in a daycare when she couldn't communicate. My fear was that something would happen to her and she wouldn't be able to tell me. That fear was actually validated by the speech therapist. That made me feel so much better. I love all my children the same, but there is a certain feeling of vulnerability when it comes to daughters. It's not until you have one that you can understand.

Of course, it wasn't easy getting the appointment to see the neurologist. We had to see the pediatrician first and then get a referral. Once we got the referral, it was another two months before we were able to get an appointment. FINALLY, we were able to see a Pediatric Neurologist named Dr. Corbier. I still give him credit for saving my daughter's life. He looked at her and examined her. He took many laboratory tests and performed EEG's and MRI. He did a very thorough exam. Initially he told me that she had some Autistic traits. He asked me how long she had walked on her "tip-toes" and I had not even noticed that. I estimated that she had started doing that at about 18 months? I thought it was cute and had not realized it was actually a symptom. Dr. Corbier told me that there was nothing wrong with her feet. She had a great arch and wasn't flat footed. He told me that her hips and legs were perfect. He then asked me about the staring spells and how often I had observed her doing it. I told him that I didn't realize that's what they were until the Speech Evaluation was done. I told him that she would "zone out" while watching t.v. and sometimes while in the car. I asked him what was significant about that since I had noticed my older boys doing that as well when they were young. He explained that in a TRUE staring spell, the child will not respond. You can call out their name or even touch them and they won't respond. He asked me to keep track of it and bring the information with me on the next appointment.

At the next appointment we sat down and discussed the test results. He was a bit concerned with some of them. Her serum copper was so low that he wanted to repeat it. Her ceruloplasmin was also extremely low. She had some other abnormal values that he thought was worth following up with. Then he talked to me about doing something kind of different. He mentioned that in some kids, changing the diet made a difference. He gave me a diet that was called "Casein/gluten-free diet" and explained it to me. (It was basically a dairy-free/wheat-free diet.) He told me that I should also give my daughter a certain liquid supplement that he strongly suggested. He mentioned that in some kids, milk will turn into a substance similar to morphine. That was shocking to me. However, it would explain why my daughter slept so much. She drank a lot of milk! He also said that milk has a lot of things in it that is not great for brain development. He gave me his website address and told me to read more there. THEN... he mentioned that some people believe that vaccines have something to do with neurological problems in children. Don't ask me why, but when he said that a light came on inside my brain. It was an "A-Ha" moment for me. I listened to him and was determined to do some research and find out all I could.

We started the diet in phases. I thought it was a very radical step and I was kind of skeptical about it. We changed to soy milk and even tried some soy cheese and similar products. She actually did well. All the kids transitioned to soy very easily and I was excited. Within a week, she began to show signs of progress. Her vocabulary doubled! Then after the second week she actually said her first sentence. I was so thrilled!! Could this be a coincidence? Why did a change from milk to soy make such a difference? I was determined to find out!

I did my research and found out that there were many parents out there in the autism community who had similar stories to tell. Traditional medicine does not believe in this and that is why I had never heard about it. Why aren't doctors willing to look into these findings. It's not medicine...that's why. This is a brief explanation of some theories: http://www.autism.org/leakygut.html
My own observation and conclusion is that it's definitely worth a try and it's NOT going to hurt your child if done properly. Many parents already believe that milk, beyond breast milk, is not necessary anyway. Many parents believe that the calcium in milk is not absorbed easily by the body anyway and that there are better ways of getting it. There are also many who believe that there are too many things in milk that are NOT good for kids. In my opinion it's definitely worth a try. Here is some good information about soy milk vs. cow milk: http://ask.yahoo.com/20021106.html

You can do your own research and find thousands of websites devoted towards educating parents about this issue. The main thing to remember is that you will need to make sure that your child is not lacking in any vitamins. That is why Dr. Corbier made sure we put my daughter on supplements when we changed to soy milk. Also, you don't want to go "cold-turkey" when changing a child's diet. Do it slowly and responsibly. You could actually do harm if you changed your child's diet to no milk and no wheat overnight. I will try and remember to do a special post on this controversial diet in the near future. :)

We continued with her speech therapy and when she turned 3 we put her in a local church Mom's Morning Out program. I met with the people and they were so sweet. I explained that she would be getting speech therapy services at the school and they were so accommodating. I felt like it was the perfect place for her and I knew that being around other kids her age would help her with her social skills. I was also impressed with the testing they did. They actually had a "play-based program" and they would test the kids and make sure they were making progress. The classes were small enough that they could individualize the program to meet the children's needs. It was awesome!!

In the end, she progressed to the point that no one knew anything was ever wrong with her. She stopped walking on her tip-toes after she turned 3 and I noticed her staring spells less and less. She matured and was more social. She was able to make and keep friends. It was as if she was another child. There is no "medical explanation" for her recovery. However, there are three things I did. First, we did the speech therapy. Secondly, we changed her diet. Thirdly, we stopped giving her vaccines. Speech therapy alone would not have explained her recovery. In my opinion changing her diet flipped a "switch" of sorts in her brain and she started to benefit from the therapy. Not introducing her body to any more toxins and/or vaccines was another factor that contributed to her recovery. You see.... it was no coincidence.

What happened to my child? I believe that it was vaccine injury. There is no other explanation. She was regressing.... she was showing "signs of autism" and doctors had no conventional solutions for me. She was not speaking....she would grunt or point... she would have tantrums and outbursts because of her frustration. Also, in hindsight I remember that her "episodes" where her feet and hands turned blue occurred at about the time she received her immunizations. This is no coincidence. Now that we know Sarah has Wilson's Disease it makes a little more sense to me. Her body has a metabolic defect. She can't process copper like others. Her ceruloplasmin is extremely low. I did my research and vaccines have tons of chemicals and by-products (such as formaldehyde, anti-freeze, metals, etc....) that probably cannot be excreted as easily for her. It was a cumulative effect on her body. As soon as we stopped vaccinating, then her body was able to start the healing process. She got better.

Okay....so there are two sides to the coin. What about Wilson's Disease? Well... we saw an improvement in her symptoms waaaaaay before we even diagnosed her with Wilson's. So, even though the doctor wants to claim that's the reason... it is not! As a matter of fact, we probably unknowingly gave her copper-rich foods during that time.... and we still saw improvement. Also, what about autism? Well... if she had autism, then we would not have seen such a dramatic change in her. It's true that in some cases, the symptoms do improve with age.... However, they don't ALL go AWAY... they just get BETTER. With her, the symptoms WENT AWAY! That's the difference. Except for the Wilson's, she is perfectly healthy and normal. She has friends and even the teacher has made comments that she is doing great in school.

The most frustrating thing about this is that when I asked the pediatrician about it, he did not even want to entertain the idea. Even after I mentioned that Dr. Corbier had suggested it, he rolled his eyes. I know I am not a doctor, but I am a mother and I know what I saw. I know what I witnessed. I can tell you what happened before my eyes. Now... do you blame me for feeling the way I do? Can you blame me for being so cautious? Do YOU have another explanation? I am all ears. :)
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"The important thing is not to stop
questioning" ~ Albert Einstein
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Isn't it Ironic....Don't you think?

I was considering changing doctors since my last appointment with my baby. I have fought and fought my feelings and anger inside my heart for so long. I thought that going to my current doctor and having lost my trust in him was probably not a good thing. There have been too many close calls and although I love my primary pediatrician, I just don't like the others in the group.

So... I ventured into another group this afternoon in search of another doctor that might have a more open mind about things. One of my dear friends had suggested I check out HER pediatrician, who happens to be a woman. This doctor sounded wonderful and very open-minded. My friend was able to do just one shot at a time with her kids and was able to speak to her about her concerns. The doctor at one point had even made a comment about how there MIGHT be something to the vaccine-autism link. I thought she sounded very promising.

I had no trouble finding the office. It was located a little closer to home.... that's always a good thing. When I stepped inside I felt very comfortable there. It smelled clean and it looked like a fun place to take my kids. I was also impressed at how they had separate waiting rooms for the sick and well kids... unlike my current group that just divides a big room with a wall to separate them. (I've always thought that was similar to how they used to separate the smoking and non-smoking sections in many restaurants... it's all the same air!) I didn't have to wait very long and that impressed me very much. I wasn't a "paying patient" so I was expecting to have to wait for at least an hour. I waited no more than thirty minutes! They took me to the back and I sat in an examining room to wait for the doctor. I have to admit that I was very anxious and excited at the same time. I was praying that things would work out. It would be one less thing that I would have to worry about.

When the doctor entered the room I could tell that I was going to like her as a person. She was very sweet and humble. I liked the way she spoke to me. It was as if I was speaking to another mother (which I was) and that made me feel like I could relate to her. I told her that she came highly recommended and I wanted to discuss some things with her before making my decision to take my kids there. I told her a bit of history on all the kids. Then I asked her how she felt about doing alternative schedules for vaccines. I explained how I felt about vaccines and how I just wanted to be cautious. I told her that my first three kids all had problems and my fourth is doing great. I was especially careful about explaining Sarah's condition and how her metabolic disorder was definitely an issue.

Well...she didn't get angry or defensive. She calmly told me that they no longer encouraged alternative schedules for vaccines. She said that she had just come from a CDC meeting that discussed the measles problems that they are starting to see and she was concerned. She went on to explain that there was no proof and that she had "prayed about this" and felt that there is no link. She went on to say how she understood my concern but she wanted to be honest with me. I thanked her for her honesty. Then I asked her if they ever split the MMR vaccine. She told me that in the past they had, but they no longer do it. She said that at the meeting they told her that the MMR loses it efficacy if they split it. (What????!!) Anyways, it sounded to me like this "meeting" was more of a "brainwashing for doctors" seminar. How unfortunate!

Luckily, my husband and I had already discussed what we would do if this scenario took place. We agreed that we would continue to see our present doctor and just take the kids for the vaccines. If they get sick we will take our kids to Primed (We know the doctors there and they are WONDERFUL and NEVER have given us any problems about the whole vaccine issue..... As a matter of fact, I asked one of the nurses one time about what I should say when they ask me if my kids are current on their vaccines. She told me that they are "current" as long as we are working on giving it to them and they are not in school yet.) If there is an emergency, we will take them to the ER. My daughter sees a team of doctors at the Children's Hospital so there is no need for her to see her regular pediatrician at all.

I can't help but laugh at the irony of it all. Even though my present doctor doesn't agree with me, at least he still carries out my wishes. In spite of his anger towards my decision, at least he is not hostile towards me. Lastly, although I will never change his mind about things and he has made it hard on me, at least he only expresses his opinion but he is not telling me what I can't do. In the end, the doctor that I was trying to get away from was the one who met our needs the best. Isn't it ironic?
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Some of God's greatest gifts are
unanswered prayers~ Garth Brooks
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