What is Early Childhood Intervention and Why Is It Needed?

Early intervention (EI) is the process of developing a focused curriculum and treatment plan that is based on a thorough assessment and evaluation that fully encompassed an individual’s physical, mental, social and environmental challenged interspersed with and related to their diagnosis of a mental health disorder. By recognizing the weaknesses or challenges that a child is having with their development and actively trying to treat and change the way the body responds and reacts to the problem, early intervention has been shown to give those individuals affected with ASD the tools and abilities to responds more positively and culturally appropriately in their physical environments and in relationships with others. One reason that has been suggested for early intervention is that by helping and motivating a child to use areas of the brain that are not functioning well, new neurons and connections in the brain can be strengthened and formed. Other thoughts are that, by forcing the brain to have certain experiences, the ‘flexible’ young brain will begin to grow new connections and form new pathways towards more normal processing of information in the affected areas of the brain.

The process of early intervention should be used for all individuals that have been assessed and found to either be at risk of an autism diagnosis or are diagnosed. Another way of looking at it is that EI should be used for any individual found to have a delay in any aspect of the development process that could potentially be corrected with the use of therapy. Research suggests that the sooner… or ‘earlier’… in the child’s life that the intervention is made, the more permanent and positive change can be created in the child. How the intervention is utilized can depend on many factors including, parental or provider choice, what interventions are available, funding or lack thereof for treatment, the individual’s needs, etc… there are more than a dozen programs used for early intervention which include Floortime, Denver, SCERTS, and RDI. While these programs all have differences in how they attempt to facilitate change in the individual, the typical EI priorities usually work on forming spontaneous functional communication techniques, developing coping skills, and learning to interact and play with peers. Programs also tend to try and work on removing the motivations for negative behavior through different avenues and attempting to prevent the behavior from continuing to occur. Other samples of early intervention services that can be offered are speech or occupational therapy, assistive technology or auditory services, as well as counseling, medical or psychological services.

For a newly diagnosed child, one of the first steps is to create and develop an IFSP (Individualized Family Service Plan.) As part of that process, location(s) to begin therapy and what forms of beginning treatment should commence. Several kinds of information are incorporated in the IFSP including a rounded out examination of the child’s current development and needs, family abilities, resources, and desires, how and how much services should be provided and for how long as well as who is responsible for certain aspects of the treatment and also the goals or outcomes that are going to be focused on developing and achieving. For a newly diagnosed two year old child, an IFSP is developed and treatment usually consists of some forms of relationship development, speech or other physical therapies as well as work with interaction and self-soothing. For more newly diagnosed toddlers or babies, intervention treatment is usually performed in the home where the child knows their environment and will feel the most comfortable and open to the treatment.

It has been shown that early childhood intervention with individuals that struggle with developmental delays can create more positive social and future life outcomes. if you or a family member has used early intervention what have your experiences been?

Do You have Sensory Problems?

I do... have for as long as I can remember. I didn't always understand why some parts of me were different from other people nor do I always understand some of the ways I respond now. Some ways that my body may respond to a stimulus I still do not understand... but I accept it and sometimes laugh about it... and sometimes cry about it... and sometimes I just shake my head and shrug. In the end, my processing challenges are a part of me and make me the unique and wonderful individual that I am. That said, I was in my thirties before I was even heard the term sensory processing disorder / sensory integration disorder and researchers are still trying to understand how these disorders work. I thought that I would take a few minutes to talk about the basic human sensory system and leave you with a small list of questions that you can read and, if interested, can use to look at your own behavior and responses to different stimuli and determine if you too, might have some sensory processing challenges. :)

When I was growing up, I learned about the five senses: touch, taste, sight, hearing and smell. The sense of touch as processed through our skin and taste processed inside of our mouths.... the sense of sight which is processed through our eyes and sound through our ears... and the sense of smell through our nose. And each of these organs sends the information to the brain for final processing so that we can use the information. In the processing the information is organized in the brain so that we can use it to make appropriate responses to external stimuli. For those with disorders of the sensory system, the organized information may not create the correct responses.... the child who reaches toward a snarling cat and is genuinely confused when the cat hurts it... the person in whom fear causes hyperactivity or out of control behavior, etc...

So let's start with some basic questions. Here is how the questions work. Each question should be looked at by thinking of how often you perform the behavior in question. The more often you do it, the more likely it is that your brain is having some difficulty processing the information in a 'neuro-typical way'. Is that a problem? Not necessarily... it really depends on how my your behavior in this regard affects your quality of life.

1. Do you prefer the dark, happily avoid bright light and feel happier in dim light? Do you find that you are bothered by light when others feel comfortable?

2. Is it difficult for you to accurately visualize images or objects in messy or cluttered backgrounds? Do you end up staring at objects overly long to process the information?

3. Do you find it more challenging or impossible to complete tasks with noise or music in the background? Do you find yourself easily distracted by noise or even seek out noise or make sounds simply to have noise around you?

4. Do you avoid noise or sounds? Are you slow to respond to sounds around you that are relevant and important... an inability to recognize what sounds are important and to block out sounds that are not?

5. Do you have difficulty processing really strong smells? An inability to smell odors that the people around you can?

6. Do you find yourself feeling large amounts of anxiety or anger when your expectations or your routine has to change? Do you find yourself doing tasks in inefficient ways because it feels more comfortable to you? Do you move from one activity to another not completing any of them very quickly?

7. Do you prefer to be alone? Prefer quiet activities? Quiet areas and places?

8. Do you have problems with textures in food and limit what you eat based on what the food feels like? Do you crave certain foods due to flavor or strong smells or will you only eat certain foods?

9. Do you have problems with touching or being touched? Do you react emotionally when being touched by people or things such as water, unnatural fabrics, etc.. or do you crave touch and will touch too much and too often?

10. If something touches you such as clothing, are you able to 'forget' the touch.... or do you feel the clothing and its touch all day in part of your mind? Do you go barefoot because shoes feel uncomfortable? Do you fill your hands with things so avoid people touching your hands?

11. Do you seem to have an awareness – or lack of awareness- to pain or temperature that is different from most other people? Can you injure yourself and find that the pain is not at the level that it should be for the injury? Do you feel comfortable in a snowy environment in short sleeves?

I could definitely go on and healthcare providers who try to help their patients with sensory issues will ask many more questions than this.

One challenge that comes with sensory problems is that as someone struggles with them and they find the way they respond is so different from other people, it affects the individual's emotional well being. People with sensory problems appears to be more likely to develop low self esteem and self critical behavior. They are more likely to exhibit socially inappropriate behavior as well as difficulty expressing emotions in a healthy way. The odds of having problems with anxiety are a lot higher in this population making a challenging situation sometimes worse. I will admit that I find it challenging sometimes myself.

This post is so basic that I beg of you to not make any diagnosis or take to much out of it. I just wanted to take a little time to introduce the topic to start a little basic awareness. If you want more information, please feel free to leave any questions you want answered in the comments or speak to a medical professional about your thoughts. Both of these diagnoses are still debated by healthcare professionals so if you would like more information, be sure to find a provider who has studied and has knowledge of both sensory processing disorder and sensory integration disorder and the nuances between them. Thanks for sharing. :)

A Temple Day

… and one that was amazing I might add! I am so excited to share it!

So last Saturday was set for a branch temple trip. A day that so many people were going to come down and watch a wonderful couple get their endowments and then the whole family would get their sealing. I agreed to come and watch children at the nearby church so that whole families could come and other couples could actually do endowments with each other instead of the more usual (one person stays home watching their children and the other gets to go to the temple.) When I agreed several weeks ago, I didn't really have any idea of the full emotional challenges that I would be hit with this week, but I actually should have known... any trip to the temple is usually preceded by challenges so that I have to really actively and painfully force myself forward and those challenges do not end until I get to the temple... or at least a few hours into the drive. This week was no exception... although I think that the challenges I have faced this week were a bit more than I have ever experienced and they never were truly able to be left behind this visit.

So after some initial difficulty of getting into the church building we got all the children in and set in the nursery and the gym. A few Kindles were passed around and my computer was happily enjoyed for a few games of 'Plants vs Zombies.' The younger ones came into the nursery and we found many toys and fun. I got to officially meet a new member of the ward and for the next few hours I lost myself in the task of watching several children – I think eleven at the highest count. Helpers came and went , but the children were a constant and they gave me so many laughs and so much joy. A few things really stick out about this time.

1. At one point early in the day I was asked a question by one of the sisters that I answered honestly, but with great difficulty. I was able to turn away to hide my distress and I think that I managed to actually hide most of it (I'm not foolish enough to think I hid all of it... I think that sometimes my pain seeps through my pores and is always visible no matter how much I try to smile) The second I turned and closed my eyes I was tackled by a beautiful child named Claire. She wrapped her arms around me in a big hug and gave me a kiss..... and then went back to what she had been doing. I am not sure why she did it, but it meant the world to me. I felt this outpouring of love and care that pushed the tears down brought a genuine smile to my face. I felt more confident and just took a deep breath and dived into the work with most of my soul and not just my body.

2. One of the younger girls asked me to help her use the bathroom. I walked to the bathroom with her and stood outside while she completed her business and when I walked into the room to help her finish, she gave me one of the most wonderful lessons I have ever received from a child. She carefully explained that some boys may look like girls... they might have long hair or wear earrings, but she knew a sure fire way to tell the different. See, girls ALWAYS use toilet paper when they use the toilet, but boys will only use toilet paper when they poop. So, she explained, if I am ever in doubt as to whether someone is a boy or girl... I can follow them to the bathroom and spy to find my answer. (I am still laughing about this!)

3. At one point , I was reading a book called “The Tawny, Scrawny Lion' out loud to a room full of children and one of them came and leaned up close. Her name is Kess and she was so interested and was leaning so close I thought she might climb into my lap at one point. I have never really spent any time with her before so it was nice to get to know her a little better on this trip.

After 2pm, I was able to head up to the temple and do baptisms. And to my surprise, even though I was over 1/2 an hour late and wasn't even sure I could sneak in... they were just starting! So I was able to change and join the group. This was the first time that Kess and her mother had ever been to the temple to do baptisms and I earned something really, really quickly... I am not the only person with severe sensory problems in my branch. The idea of total immersion was clearly fearful and terribly uncomfortable for them both. Both of them managed to do one baptism each and it was an amazing experience to view these brave women, struggling so hard to do something that other people find easy or take for granted. Baptisms used to be very uncomfortable for me with my sensory problems and I have really had to work with my body to make them something I can do and still feel the spirit. At one point when Kess was trying so hard to figure out how to do the baptism through her fear, I realized that I was praying and begging so hard for her to be able to conquer her fear for the few seconds it would take.... and I realized that everyone else was too. All the people waiting in the chapel were standing at the window watching, the men around the font, and the rest of us.... just silently pleading with the Father to help her. And she did it! She managed to do it and I am so grateful to have witnessed such a wonderful and brave act. I was so blessed to be there and I am so grateful for the examples that so many wonderful people give me.

After the baptisms and confirmations we started home. I was riding with some friends and they gave me a tour of Kittery and also took me to see a beautiful lighthouse... (I thought of you, Carolyn, as I looked at it. It was soo beautiful and so familiar... I realized it must be a very famous lighthouse because I think I have seen it on cards and some calendars as well.) Then I stayed over at their house in a wonderful cozy bed and slept better than I have in ages. All in all, an amazing day! Thanks for letting me share it. :)

What Motivates me to be a Leader and other Thoughts....

I have a few different thoughts on the first question; about what motivates me to be a leader. A few weeks ago, my easy answer would have been that nothing motivates me to be a leader and that I do not want to be one (leader). One thing I have learned is that whether I want to be a leader or not I am a leader. I am a mom... for a little while I will still be a wife... and I have a life and a spark and an energy that should be used and not squandered in confusion, misunderstanding and self pity. So what motivates me to be a leader...? Well, if I am going to be a leader (understanding that I will be a leader whether I 'want' to or not') I want to be the best leader that I can. I want to make change and help others and bring financial security to myself. I want to set up my life in a way that I am utilizing the little time I have on this planet to the best of my abilities at the time... and hope that as I try, my abilities will become honed and more able to tackle the difficulties that I will face in my future. There is a line in book six of the 'Harry Potter' series where Harry and Dumbledore are discussing the prophecy that has caused Lord Voldemort to chase Harry his whole life. In that paragraph, Dumbledore discusses the idea that Harry does have choices and he is not bound to follow the prophecy. At that time, Harry realizes that he has made a choice... and even though that choice was difficult and had large consequences attached to it, he smiles because while the situation hasn't changed... how Harry looks at it has. And as the character states : 'that makes all the difference in the world.' I feel in some ways that I am in a parallel situation... minus the mortal danger from Voldemort, that is. :) I can see myself as being forced into choices by other people... or I can see that they are making their choices and while those choices do affect me and my life, I can see how to make my own decisions. I can look at the situation less personally, more critically and see the blessings and positives that shine out of the gently woven tapestry of my life that seem s currently dark, drab, and limited. Even changing my mindset to look for the changes is a metaphoric golden thread that can help bring light and opportunities into my life.

I have several sources of motivation that I have been able to discover in my life. I think that a few might be more prescient right now and might even be motivations that everyone has because they are more instinct than motivation. I will have to let you be the judge. One thing that motivates me is my severe sensory issues. I do not always understand why I do some of the things that I do and why I do or do not like some things. Over the last few years as I have discovered that I do have sensory problems that that some of the things I do are considered truly 'normal' for someone with my condition who hasn't been treated, I have discovered that my body and mind instinctively react in ways that are not truly necessary or positive. However, rationally understanding this fact doesn't change the way my body/ mind react to a sensory assault. Some things such as smells I have worked really hard and have made progress on getting past the difficulties that they can give me. Some things such as water and noise, I have made little to no progress on and will probably need professional help to overcome. Along with the sensory problems is my gluten allergy- so severe that a small exposure can set me back 20 pounds in one week and take quite literally months to recover from. The motivation to stay safe from both sensory and food hazards is a huge motivator for me and I limit myself in many ways due to my concern and fear of pain, discomfort, and instinctive reactions that are not entirely under my control. (One reason I know that these two things are highly motivating is that I am willing to overcome a few other challenges to put them first in my mind. I try to hide in groups and be the same and blend in... but if confronted with something that challenges my sensory system or potential gluten exposure, I will stand up and stick out until I feel the situation is safe again or I have left. I am the person on the airplane that will make sure that nobody in several rows around me gets to eat a sandwich which doesn't make me very popular... but it keeps me safe and well. : D ) One other motivation is work- I truly like to be busy and I enjoy working towards goals or helping other people. Service is a big motivator for me and I really like how I feel afterwords.... like a little spark has been kindled in my heart and that I truly deserve a small break to enjoy the glow from the spark and a brief rest- I think that brief spark could be called joy. I m motivated to earn money and I am willing to do almost anything to earn it so that I feel secure. I think this motivation would be less strong if I did have more financial means and I wasn't always struggling to just hold my head about water. So I am a jack- of -all -trades and I work for the post office when they need me, teach CPR and first aid a few hours a week, take on freelance genealogy jobs, and I use websites to not only help me save money, but to earn a little bit as well. I am selling some of my belongings through Uncle Henry's and Ebay and I sometimes help people with some shopping for a little extra cash. On top of that add school and if I seem frazzled... well, I am! :O I am motivated by external concerns such as good grades, social status, what others say they think of me... and I am also motivated by a sense of satisfaction at a job well done. I feel inspired to help whenever anyone seems to need help … even if I am not sure what to do. I feel motivated sometimes in such a strong manner towards helping someone or working that I can often puss myself past my physical limit- in some ways my spirit is too willing... and my flesh too weak. ; )

I have quite a few extrinsic motivations if I think about it and look at my former thoughts. I am motivated my money, winning over others, teaching (which can be a form of power), and social status in the form of positive 'carrots'- I need to have good grades, feel liked, get praise, etc... Those carrots are very important for my happiness and to minimize my chronic case of low self esteem. If I was to place these motivations into an order from the most motivating to the least, the list would look a bit like this:
1. Social Status
2. Monetary Compensation
3. Winning Over Others
4. Having Power
There are so many traps that I could find myself entangled in through these extrinsic motivations. I can see myself doing things for money which could violate my personal or religious code as well as the laws of my community. I can see myself being willing to do things to please others that do not please myself... simply to feel that I have made someone else happy or made their lives easier. I defer to people that I have a perception of having a higher social status- which can have its ironies considering my liberal and feminist bent. I defer to people that I see as more knowledgeable than myself, have titles such as Dr., Professor, etc... and I also defer to all men in priesthood roles in my church (this can be a bad thing and isn’t necessarily church doctrine... I think I learned that at home as a child and even my liberal feminist bent hasn't changed that pattern of thinking.) Some of the ways to avoid becoming trapped in these external cycles of motivation are easy to state, but not as easy to put into practice. Working on understanding myself and developing appropriate self esteem would help me to avoid the problems that I can develop from doing things that other's want that I am not sure are a good idea. Developing confidence and self esteem will make it more possible to say 'no' and feel comfortable with my decision no matter what the reaction it provokes. Sometimes I think I say 'yes' so that people do not get mad... or I am concerned that they will not like me... but sometimes the answer really should be 'no.' One important way to avoid getting lost in some of these external traps is to recognize where your weakness are. By understanding the difficulty I have in one area (such as saying 'no'), I can recognize situations easier that might be a problem for me. Understanding my weaknesses can help me to learn compensatory techniques and also ways to deal with my difficulties. It is impossible to work with and understand a weakness that a person doesn't actually understand or acknowledge that they have. That's my thoughts at any rate.

I seem to have a good mixing of intrinsic motivations as well. I feel excited and inspired to help others, I feel joy at a job well done, I want to be true to my beliefs, and I like to be surrounded with people that I care about and people who care about me. If I was to place these motivations into an order from the most motivating to the least, the list would look a lot like this:

1. Making a difference in the world
2. Being associated with people I care about and care about me
3. Helping others
4. Satisfaction in my work and private life
5. Being true to my beliefs

Looking at these lists side by side – I actually printed them out and lay the paper in front of me to study- I found a few interesting things. The first that seemed fairly obvious is that my external motivations are really almost at 'war' with my internal motivations. Social Status and monetary compensation when put first (as I have done) on the list doesn't really compute with the first two on my internal motivations list. The first list (extrinsic motivations) appears to be more of what I tend to follow when push comes to shove... and that is a shocking realization for me. In fact, that seems fairly shallow and self centered... and those words are not words I would ever have thought to use to describe myself. It appears to me that I need to take some time to look at both of these lists more fully and really look at the major motivator behind most of my extrinsic motivations- which appears to be fear. In the past I have recognized that I have some aspects of fear in some parts of my life, but I do not think I have recognized until now how much fear actually rules my life and my choices.

After chewing on the ideas that I mentioned above I thought of a few situations in my life where I have had trouble: i.e, I had conflicts between my external and internal motivations. Looking at those situations I seem to have found a pattern. If pushed too hard, the external motivations were given first shot and I rarely felt very satisfied with the outcome. In fact, I didn't feel satisfied or happy at all... and maybe that is the point. Maybe I need to get past my fear to stick up for myself and others and that will help me to find my joy and 'sweet spot.' I really think that the major reason that I do cave to people is fear and while the reasons for the fear maybe different in these situations... its effects are the same. I feel closed off, unhappy, confused, and certainly unsure and sometimes I feel too much pressure and I just want to run. I haven't run for years though... that's a good step!

I then tried to take both lists and put them together in the 'true' order that I think they are actually formulated in my life- as I doubt we divide our thought and actions into separate lists very often. Here is what the finished product looked like. It actually changed quite a bit in the thought process. An asterisk shows an intrinsic motivation.
1. Having power (this moved to the top because I began to see power as a form of control... and if you are fearful you are more likely to control the things around you and have that need to control. And the more I thought about it, this placement made more sense.)
2. Monetary Compensation (as long as I feel poor and unable to even buy the medicines to keep me healthy I think this will always rank high... especially as I seem to have proven to myself that I am willing to work long hours for little compensation.)
3. Helping Others *
4. Being associated with people I care about and care about me*
5. Social Status
6. Making a difference in the world*
7. Winning over others
8. Satisfaction in my work and private life *
9. Being true to my beliefs *
I did wonder if because of the way I interpreted power if it should be both asterisk free and have an asterisk, but I did leave it asterisk free for now.




Unfortunately, I am not really sure that I am very impressed with the above list. Oh well... at least it was as honest as I could make it due to my thoughts and understanding. :) I think I have several capabilities and strengths. I am not afraid of work and I have a love of learning. I am fairly tolerant and very generous to others. I am great at bringing a smile to the face of other people and working to listen and help in the areas that people feel most needy. I am quite loyal and even when someone has caused me great difficulty and even rejected me and who I am , I find it easy to continue in some ways supporting them and doing the things they need. :) I think I am also pretty strong and can function and sustain a fairly large emotional and physical load for a long period of time which gives me more options and solutions of problems than some people have. I have a great deal of experience with dealing with people in crisis and with serious difficulties- such as substance abuse, domestic violence, mental illness, developmental disabilities and poverty.

But I would be remiss if I didn't mention some of my challenges and weaknesses. I do not have a lot of confidence in myself and I am very likely to place my trust in others even if I am not really comfortable with their conclusions. I find myself sometimes forgoing the care of myself to help someone else... which in the long run affects both me and the other individuals negatively. I have some difficulties with consistency and I do have a strong emotional base that I can find quite difficult to hide at times... especially in situations where I feel hurt, threatened or harmed.

So looking at my strengths and my listed motivations, here is a list I came up with for areas where the two groups seem to combine or can be blended.
1. I have a great need to help others out of poverty and to help myself out of poverty as well.
2. I have experience and a great love of helping people in difficult circumstances get out of those circumstances.
3. I am strong and can help someone with difficulties for a long time so that they can have help consistently for a better and more positive outcome over the long term.

It seems to me that there are a few situations where I would be quite successful and find some joy and peace in my decisions.
1. I could work towards becoming a foster parent for developmental disabled children and even a long term adoptive parent.
2. I could finish my degree and get work as a social worker in areas that I have strengths in such as children, substance abuse, child protective services, and mental illness.
3. I could start a not for profit for helping children and adults with disabilities in my area have the resources that they need to be more successful, more healthy, and to be more productive members of society.

There are probably other things that I could do, but these were the few that not only first came to mind, but have been popping into my head over the last few weeks as ideas for my future that seem reasonable and I also find fairly exciting and energetic about. All three would take a huge amount of time, energy, and also would require that I expend a bit of time, energy and focus on continued building of my strengths and capabilities. All three would require learning and development in areas that I do have strengths but not necessarily the knowledge that is needed. I would also need to work with people who do not necessarily think like me and have strengths and difficulties in different areas of their lives which can help me to grow in understanding, generosity, and joy. This list helps me to feel hopeful and also seems to be helping me to discover a new direction in my life which sounds difficult and challenging, but worthwhile, exciting and downright fun and rewarding. I have already started to make priority lists for all three to ponder and really think about to see where my energy and time should best be focused. Some parts of the future look quite exciting now. :)

In the Blink of an Eye...

A totally scary thing happened this afternoon. My husband had taken Bug up to town to do laundry and to take his service dog to the veterinarian. Everything went pretty well until at one point Bug's impulsiveness managed to override his rational thought and Bug jumped out of the car and ran across a busy parking lot towards the street. We are lucky as he was unhurt and was stopped by someone who recognized and 'caught' him. But that was seriously a close call.

Bug's tendency to run really seems to stem from his sensory problems. From the moment he could walk, he would run. (After all why walk anywhere when you could get there faster.) When he was around 3-5 years old, he could literally run for hours and I was a very fit individual then... exhausted, but fit. :) I remember one experience vividly in my mind when I was struck by the realization that my son's sensory needs were so high and severe. As a family, we were hiking in a park up a steep hill with a very strong wind that seemed to push us back down the hill. My husband and I would turn our faces and our bodies so that the wind didn't strike us directly and other hikers would do the same... Bug would face squarely into the wind and laugh as it pushed and pressed at him. His long curly hair flying straight back along with the ends of his jacket whipping in the breeze... and he was clearly not only enjoying the sensation but craving and needing it. I felt like he was trying to embrace the wind. The joy and satisfaction and almost ecstasy on his face was breathtaking to see. (And a good lesson on adversity as well.)

In some ways that period of time was easier as my husband and myself were always on the alert ready to run, stop, or tackle him. His impulsiveness and inexplicable running have faded with time as his sensory needs have become more controllable and integrated into his nervous system. And in some ways that has added more danger as we rarely have two people on top of him constantly and we as parents are no longer constantly on high alert- which is probably healthier for us... but not for Bug. It only takes a moment for the potential for life to change in ways that we do not want. One blink could be one blink too many.

Of all the blessings that I count at the end of my day, I am so grateful for the opportunity to spent the evening with my son- still safe and whole. I am grateful for a husband who does try so hard and is a great person and my friend. I am thankful to go to sleep with my family still intact and well. I am so grateful that my son really does seem to be well on the way to conquering his sensory disorder... maybe someday I can work on conquering mine. There are so many things to be grateful for. I am truly blessed.

Migraines and Women

This week in class we studied three neurological disorders extremely common to women; migraine, Alzheimer's disorder and multiple sclerosis. I wanted to take the time to discuss the basics of migraines but also share a small autobiography from an old school friend who still suffers from migraines. I feel like unless you have truly suffered from migraines (or as my friend mentions sensory disorders and/or autism) you can have no idea what it truly is like and a definition will never been able to truly communicate that information to you. I have only had two migraines in my life and I wouldn't wish them on another living soul. I hope this information is not only informative to others, but also a forum for others to share their experiences as well for the education of my readers.

Migraines can be describes simply as a bad headache- however, that simple explanation really doesn't describe the scope, pain or symptoms of this disorder. A migraine can usually be divided into five separate phases called 'prodrome', 'aura', 'headache proper', 'headache termination', and 'postdrome'. While not every migraine sufferer will go through all five of these phases for every migraine, all migraines will usually have a few of these components. Migraines can also be divided into two types- migraines with 'aura' and migraines without. Symptoms of a migraine attack coming can happen a few hours or even days before the onset of the 'headache' and symptoms are not limited to, but can include irritation, euphoria, depression of affect/mood, intolerance of smell or sound that would usually be acceptable, aura, throbbing, pulse-like or pressure-like pain, as well as nausea and vomiting. It can be brought on by such things as inappropriate sleep, hormonal changes or menstruation, fasting, specific foods, environmental factors, possibly stress and even smoking or alcohol.

Some treatments include light medication such as over the counter pain relievers for mild symptoms as well as caffeine. For migraines that are not as mild, there are some pharmaceutical options that can be given orally, subcutaneously, or intra-nasally that have been shown to help. The most commonly used medications depending on symptoms and patient tolerance include Sumatriptan, DHE, anti-nausea medications, opiates, beta blockers, anti-epileptics, hormones such as estrogen and more. Other individuals use chiropractors, massage and acupuncture to control migraine symptoms.

I also got a pretty good biography from a friend -Renee Wrede- about her history and life dealing with migraines. I asked her specifically because I knew that at least for a while she was having them very frequently. What she wrote is a little long and is only lightly edited for spelling.

My hx of migraines
I started to noticed my headaches when I was little - about age 11. I remember pressing the side of my face against the cold window on the school-bus on the way home to relieve some of the hot throbbing pain around my eye/temple area. My family would tell me to lay down with a cool washcloth - but that didn't seem to help. Sleep and pain meds at the time offered limited relief. My PCP at the time told me that I would "grow out of it" - and seem to doubt my headaches - the sensitivity to light, sounds, touch, smell.

At age 13 I had a new doctor who first used the term "migraine" - he was able to describe my pain in detail - it was very validating. By this time I was experiencing weekly migraines and my family did not seem to believe me. By then we had noticed that cocoa triggered my migraines.

My new doctor prescribed a new upcoming pain med at the time (can't spell it) Toridol? It provided little to no relief.

I continued to experienced horrible migraines throughout school - if caught soon enough I was able to tame it down to where I could still function.

In April 2006 when my neck was broke while working with a teenage client my migraines went into overdrive. I struggled with the pain of the undiagnosed break and the migraines that seem to be a result of the break. Days went by without any relief - I was apply ice to the base of my neck as well as my head and face. I received burns for the cold on various parts of my head because covered ice packs were never "cold enough" so I opted to placing ice packs/bags of ice/frozen veggies/frozen juice cans directly on the point of pain.

I went to ER 2 -3 times a week - which eventually labeled me as "drug seeking" - although my tests always came out negative. I was diagnosed with a "mood disorder" because my pain affected my mood and my ability to work/focus/eat/socialize, etc.

8 months after the break the pain of the break had decreased but the migraines were ongoing. By now my migraines always included limited to no vision in my left eye. Black dots or white shimmering "diamond" images danced around my left vision moments before the pain began. I begged to be referred by a Neurologist - Dr. Good enough.
It was Dr. Goodenough who discovered the fracture in my neck. He also encouraged me to record my headaches and pains.

This was very informative - and helped me identify the migraines from the sinus headaches. It also helped me to identify that my hormones play a HUGE part in my migraines - they appear to cycle around my cycle. And Dr. Goodenough prescribed a daily med Topamax to prevent the migraines as well as a Relapax for when the Monster Migraines attacked. It seem to work - my migraines decreased from daily to 14 a month. Pretty good at that time.

I think my stress level, my physical and mental health continues to play a role in my migraines. I am still triggered by smells and cocoa. Now I experience 2-3 migraines a month. Did I mention that I often throw up when I have a migraine - this was particularly painful in 2006 while my neck was healing.

Despite the pain - it often amazes me how all my senses are brought to a new level - I remember laying on the floor in the dark ER bathroom - the only place that sheltered me of the light, limited smells, and muffled the sounds of the ER - and while I groaned with the frozen peas to my head I thought "I can smell bacon - they must be cooking bacon - God I want to throw up and die!" (They were in fact cooking bacon one floor below!) This is what I call the "superman affect" of my migraines - my hearing, smell, sight, touch are so enhanced that it's painful - I can only imagine that this might be similar to the term "sensory overload" that we often use with children an autism diagnoses. It's intense and it's hell.

I think one friend described migraines best when she said "At first you're in so much pain that you fear dying. Finally near the end you're in so much pain that you fear that you'll never die!"

After the break in 2006 - after the mood disorder and drug seeking labels - I wanted my life to end. The constant pain was too much - I couldn't take it any more. One night at the ER I whispered (I can't speak at a normal level during a migraine) - to the doctor on duty to kill me. "If you care about me - you'll kill me now." The room was dark - my boyfriend stood by my bedside - my connection with friends and family had also been affected by my migraines. The ER doctor laughed (loudly) and seem to take my request as a joke. Little did he know that I had already spoken to family members about custody of my son and possible funeral arrangements.

I can totally understand ending your life when you're in so much pain with no end in sight. I am grateful that a friend suggested Dr. Goodenough - it is frustrating that the ONLY assistance and support I received was from a provider whom I had to seek out. However, now I'm in a better place. Life is good - and I have a hard time believing what life was like 4 short years ago.

If you are reading this and suffer from migraines, please feel free to comment anonymously if you wish. If nothing use, I want to have a better understanding of the problems, but I also want to know how I can help people who are having these problems. Understanding the disorder I think will help. :)

To Struggle....

I love my son so much. It is sometimes such a struggle to watch him struggle... to watch his brain and body spin out of control when his parents are emotionally troubled. He is so beautiful and such a kind and empathetic soul. He has so many talents and so many people tend to only see his difficulties... and never see his soul underneath... just begging to be loved. He wants so much and his body just can't keep up all the time and he gets so confused by some things. As I pray sometimes, tears pouring down my face, asking the Father to help my son I feel so much that I can't describe. It can be so confusing to me to as I look at him and I feel this overwhelming love for him, this pain for his struggles, the physical pain from sometimes getting in the way at the wrong time, and sometimes even anger that the struggle is so hard for all of us. As Alma says – 'Behold I say unto you, I cannot say the smallest part of what I feel.'



I am so blessed to be his mother and I am so grateful for all the lessons that he teaches me and I am grateful for the opportunity to be a mom. But sometimes I am tired and I feel so weary of the struggle that I feel almost too sorry to do anything other than sit and cry. The last few months have been such a trial and pressing on has been sometimes more of a habit than a joy. But then I try to remember:

'Yea, I know that I am nothing; as to my strength I am weak; therefore I will not boast of myself, but I will boast of my God, for in his strength I can do all things; yea, behold, many mighty miracles we have wrought in his land for which we will praise his name forever.'

My family is truly blessed.