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7 Life Lessons From Raising a Child With Down Syndrome

When this mom learned her baby had Down syndrome, she was shocked. Four years later, she looks back and wishes she could have encouraged her younger self with these seven lessons.

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Deanna Smith is a mother of two toddlers (Addison, 3, who has Down syndrome and Carter, 2) and a former high school music teacher turned stay-at-home mom. Her personal blog, Everything and Nothing from Essex, chronicles her journey through motherhood and raising a child with Down syndrome. She is expecting her third baby in November.

If I could go back in time and relive one moment, without a doubt I would choose the moment four years ago when I received the phone call and heard, “Your baby has Down syndrome.” Slumped on the couch, tears overflowing, and feeling like my world just imploded, I knew nothing would ever be the same.

Upon receiving my daughter’s prenatal diagnosis, I remember feeling a sense of soul-crushing hopelessness. Hopelessness for what my daughter’s life would be like. Hopelessness for what the diagnosis meant for me as a parent. Hopelessness for how different our family would look from the one I had imagined for us. I was changed forever by that call.

But now, looking back on that moment four years later, I want to replace that anxiety, sorrow, and anger with different emotions. Hopeful ones. There were things that I just didn’t know at the time. Up to that point, I had a stereotypical picture of Down syndrome in my mind: a life with zero potential, a life spent trapped in a corner with no time to think, feel, or truly live. This unfounded view of Down syndrome created an imagined reality of despair and sadness. A reality that, it turns out, doesn’t exist.

If I could go back and relive that moment, I would seize the chance to tell myself these seven things that I have learned since that day.

1. Your baby is a baby first. You are not giving birth to a “Down syndrome” baby. You are giving birth to your baby, a unique individual who will bear resemblance to you and your family in addition to some similar features to others with Down syndrome. It’s amazing how much my two children resemble each other even though one has Down syndrome and the other doesn’t. You don’t have to love Down syndrome to love your baby. Focus on the life — not the label.

2. Your baby will still achieve typical milestones. If you have siblings or friends who had babies right around the same time you had yours, you may find yourself falling into the comparison trap. Do not compare your baby to typically developing babies. Instead, start listing the things that your baby has accomplished. Don’t diminish your child’s beautiful and victorious field of daisies by comparing it to the nearest mountain. The milestones might take a little bit longer, but when they finally happen? The celebration is so much more joyful.

3. There is a lot of support and help available. There is always support for a parent with a child who has special needs. For example, you can enroll your baby in your state’s Early Intervention (EI) program as early as 6 weeks old. As Susan Skallerup describes in her award-winning book, Babies with Down Syndrome: A New Parents’ Guide, early intervention means “intervening early in a child’s life to encourage growth and development. Many different professionals are involved in providing EI services, including specialists in motor skills, language and communication, learning acquisition, and social-emotional development.” You child will begin therapies to help her reach milestones faster and correctly. This will set good paths for future learning.

4. There is much beauty in Down syndrome. Oftentimes my daughter’s beauty takes my breath away: Sparkling almond-shaped eyes that are the same color as her Daddy’s, a captivating smile that often leads to laughter so infectious that the hardest of hearts will melt in response, small hands that are quick to seek mischief and then sign for forgiveness, a cute gap between her toes that is perfect for wearing sandals. Allow your stereotypical reality to crumble and truly get to know the person hidden under the label.

5. Your baby will experience a wide range of emotions. You might hear someone say that your baby will be “always happy,” which can make your baby seem somehow less human. But the truth is that your child will display all types of moods — happy, sad, silly, angry, whiny, hysterical, delighted — the same as any other person.

6. Frustrations can be a good excuse to get creative with your teaching approach. Embrace the unique frustrations you may face and realize that every child learns differently. For example, if your child has difficulty communicating verbally, teach her sign language. A quote on the website of Signing Time, a Parents Choice-approved DVD series for children, says: “Sign language is a wonderful tool that allows even very small children to express themselves.”

7. Down syndrome will not define your child’s entire existence. The huge bit of news will not overshadow your whole life and will eventually slide into the background of a normal family life. You will have bad days that have nothing to do with a diagnosis. You will laugh again and cry again about other things. You will enjoy a lot with your child that has nothing to do with chromosomes or therapy or doctors’ appointments.

These days, I am amazed at how much hope I have — hope for Addison’s future, for her zest to enjoy life in her own way, and for her ability to achieve whatever she sets her mind to. Her diagnosis has already provided me with new perspectives, ways to love, and a deeper appreciation for the little things.



Please don’t tell me to just chill and relax

YOUR heart starts racing. Sweaty palms. A feeling of desperately wanting to escape suddenly sweeps over you.

If you’re about to skydive or swim with sharks no one would question these feelings.

But for those who experience these heightened emotions at a simple birthday party, attending their child’s parent-teacher night or when speaking at a work function or to a sales assistant, it can be debilitating and isolating.

How do you tell a friend you’re only one step away from a panic attack at just the thought of going to their wedding where you will have to socialise with new people?

The reality is many people dealing with anxiety don’t say anything. Not to their partner, their mates or their doctor. They can become experts at avoiding situations which trigger their anxiety and adept at masking symptoms.

Just as triggers, levels and symptoms are different in each individual, so is the journey in recognising anxiety and seeking advice and support.

One local man, Xavier, is using his journey to try and reach out to others.

“I just felt there was a need for a local anxiety support group so I’ve gone about organising one,” Xavier said.

“Dealing with my own issues made me feel we should have a group in the community that was open to all ages, male and female, where people could share in a non-judgmental space what has worked for them and maybe get back on track.”

Being anxious about going to a job interview is normal. Frequent worry not related to a specific event or stressful situation is not. Excessive fear, obsessive thinking, irritability, physical symptoms such as hot or cold flushes, a tightening of the chest, a racing heart or breathlessness; these are some of the signs experienced by people with anxiety. And this should not be accepted as anyone’s “normal”.

“Anxiety comes in all forms; OCD, panic attacks, agoraphobia. People avoid doing things they really love, as well as the simpler things like shopping, when they have anxiety. It can be very isolating and lead to loneliness. I know, I’ve felt it.”

You wouldn’t tell a mate with depression “cheer up, don’t be sad” and expect a result. It’s the same with anxiety. Saying to someone or telling yourself, “relax, don’t worry” is not going to cut it.

A good place to seek help is with a visit to the doctor. Seeing a GP will ensure diagnosis and an individual plan of action. The medical profession has access to resources and can suggest services you may not be aware exist.

If you would like to be part of the Coffs Harbour Anxiety Support Group, meetings start February 7 from 11am to noon then every second Tuesday at the Neighbourhood Centre, Earl St, Coffs Harbour. More info Xavier 0411 338 699.

“Come for a cup of tea or coffee, a chat or just to listen. You don’t have to be alone.”



6 things I wish people would know before meeting my Asperger’s husband

The Big Bang Theory may show the humorous side to the intense paranoia, struggles with empathy, sensory sensitivities and other key points of the mindset of the Asperger’s person. Yet, beyond a comedic device, the struggle is real for the neurodiverse person and their family members.

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There is a great gaping hole in the awareness of Asperger’s or ASD (Autism Spectrum Disorder) in the general population. Since my husband’s diagnosis, he has felt at a loss as to how to explain himself and the stigma of judgement is so strong that he’d rather act ‘normal’ than be open about his struggles.

Despite how much understanding could be reached by educating people on it, the Asperger’s person normally lives in their own private hell – trying to make sense of reality when the majority of people see things differently.

I wish when people meet my husband they would leave their judgements at the door, and try to not view him through their view. Perhaps these points will help.

1. Things you may not notice, do bother him.

Sounds, smells and visuals are at a different intensity for him, so sometimes he can get irritable without warning. Shopping centres are torture for him and anywhere where there are multiple conversations going on at once can be trying.

2. He thinks you’re over-analysing him, and if you say you’re not, he probably won’t believe you.

The world makes sense to him only if everyone else thinks the way he does. He’d prefer to think that everyone else has the same neurodiverse qualities; because that means the world and other people would make sense to him.

3. He has a defence mechanism that can come across as childish.

That old taunt ‘I know you are, but what am I?’ is often used by the Aspie when they feel themselves being threatened. Even with a throwaway comment taken the wrong way (and he takes a lot of things the wrong way), my husband will likely bristle and attack you back.

He’s not trying being a jerk, his mind is just like a supercomputer which has identified you as a threat.

4. He likely doesn’t believe you’re being real with him.

Because he has to ‘act’ so much, studying traits, learning to fit in when it’s so unnatural to him, he naturally assumes other people are the same. My husband often expresses that everyone is an actor. Being overly sceptical has its uses: there’s less chance of being hurt.

5. Being around you is very tiring for him.

This is because he feels he has to be ‘on’ when he’s socialising. Managing social situations comes with great difficulty. Talking to more than one person is exhausting as it takes too long to analyse how to interact with each person. So if he picks up and leaves mid-conversation: it’s not you, it’s him.

There are other things such as how he takes things literally so some humour can be lost on him. It took my husband decades to understand sarcasm and he still needs clarification.

Asperger’s syndrome is not just a punch-line in a sitcom, it’s a real way of thinking for hundreds of thousands of people. However while they are labelled diverse, most would shun that label as their way of thinking is the only way they have ever understood.

My husband has many wonderful qualities, but being with someone who thinks so differently to the typical population has unique challenges. Studies show that about 80 percent of Asperger’s partners with non-Autistic partners divorce. The number could be even higher than that considering de facto and other partnerships.

The ASD mind cannot properly understand the needs of others, when they are concentrating on making sense of this crazy world for themselves. Deemed the Cassandra phenomenon by Professor Tony Attwood, partners of the Asperger’s person are often not believed in regards to challenges with their partner (including sometimes abusive behaviour).

If men are from Mars and women are from Venus, Asperger’s men are from another galaxy entirely and the sooner awareness is raised about ASD, the better the chance for the next generation to have fruitful relationships.

It is important for us to realise that there are no differences in Christ – from Romans chapter 10, verse 12 (paraphrased) – there is no difference between Jew and Gentile and Asperger’s, the same Lord is Lord of all and richly blesses all who call on him. We are equally created in the image of God, but in a fallen world where some things go awry, people’s humanity is sometimes expressed differently. Jesus died for Aspies as much as for everyone else.



Age at Onset of Sarcoidosis Among Gender Differences Seen in Patients

Age at Onset of Sarcoidosis Among Gender Differences Seen in Patients

Women  tend to develop sarcoidosis at older ages than men, and they’re more likely to experience eye inflammation (uveitis) and cutaneous involvement as well,  according to a retrospective study of sex differences in this disease, conducted on people diagnosed between 1976 and 2013.

Men, however, are more likely pulmonary symptoms related to sarcoidosis.

The study, “Influence of Gender on Epidemiology and Clinical Manifestations of Sarcoidosis: A Population-Based Retrospective Cohort Study 1976–2013,” was published in the medical journal Lung.

The influence of ethnicity on sarcoidosis is well-documented, with a large number of studies having investigated the role of ethnicity on the epidemiology and clinical signs of the disease. The role of gender, however, has not been analyzed in-depth.

Drs. Patompong Ungprasert, Cynthia Crowson, and Eric L. Matteson, all with the Mayo Clinic in Rochester, wanted to determine how gender might impact the disease’s epidemiology and clinical manifestations.

The team identified all the residents of Olmsted County, Minnesota, diagnosed with sarcoidosis between 1976 and 2013. In total, researchers reported 345 sarcoidosis cases, with half of them being male and half female.

Researchers analyzed the age of onset and disease characteristics among these patients, and found that women were diagnosed at later ages than men, 48.3 years compared to 42.8 years, respectively. This difference was statistically significant.

Moreover, uveitis and cutaneous involvement were significantly more common among female sarcoidosis patients, with 6% of the women having uveitis compared to 1% of men, and 25% of women having cutaneous involvement compared to 12% of men.

Conversely, pulmonary symptoms were significantly more frequent in male patients (51%) compared to female patients (36%), even though intra-thoracic disease was seen in the great majority of patients (98% of the women, and 96% of the men).

Researchers also found that the frequency of elevated levels of the angiotensin-converting enzyme (ACE) (a protein involved in blood pressure control) and hypercalcemia (elevated calcium levels in the blood) were not significantly different between men and women.

“There is no difference in sex predilection for developing sarcoidosis. In this study, females tended to be older at the age they developed sarcoidosis, and had more uveitis and cutaneous involvement than males,” they concluded.

Understanding sex differences in the clinical manifestations of the disease is important to modeling disease occurrence in the population, and could help improve management of the condition.



Success: A Severe Tic Disorder Treated through Environmental Medicine

I hope this case report will help shed light on how a biomedical and environmental approach to a serious tic disorder can be useful.

Personal History: MC is a 13-year-old girl.

Background Information: This patient began seeing me approximately three years ago. She had been seen by a neurologist and psychiatrist and her condition had received a diagnosis of TS, as well as one of obsessive-compulsive behavior. She also had a number of other physical symptoms, including nosebleeds, bedwetting, itching, and headaches.

The patient had a history of frequent ear infections, with a treatment history that included tubes in the ears, and frequent rounds of antibiotics. She also had a history of frequent stomachaches and yeast infections as an infant. Her mother was very concerned; MC also had significant gastrointestinal symptoms, including diarrhea, abdominal gas, belching, and rectal itching.

Her neurologist had noted paroxysmal episodes of blacking out but basically kept to a diagnosis of a tic-like disorder. Her tic-like disorder included eye blinking, head shaking, sniffing, and a smelling type of aberration. She also licked her fingers and had behavioral difficlties.

Past Medical History: Her past medical history included a parasitic infection, Cryptosporidium, in 1998.

Environmental History: The family lived in a farm-like area. They lived surrounded by many types of animals, including dogs, cats, cows, horses, chickens, and rabbits—all of them outdoors.

Medications: MC had been on a regimen of many medications to control her symptoms, including: (1) Topamax; (2) Prozac; (3) Provigil; and (4) a number of other psychopharmacologic agents, including Geodon and Risperdal.

Allergy history and testing: MC was tested and found to be allergic to pollens, dusts, molds, and some foods, including cow’s milk. She had significant sensitivities to 18 allergens. She had never been allergy tested before coming to my office. We were required to wait until she was out of school for summer vacation to take her off psychiatric medications in order for her to be appropriately allergy skin tested.

Laboratory testing results: The results of her stool study indicated that she had a 4+ (highest level) yeast infection in the gut.

Treatment plan:

  • We placed her on antifungal medications to treat a rash under her arms.
  • We began use of antifungal creams and initiated a low-yeast diet to treat rectal itching.
  • We placed her on vitamin K daily to treat the nosebleeds.
  • She was advised to avoid fabric softeners and other scented products.
  • We took her off psychiatric medications.
  • We advised her family to have MC avoid milk.
  • We placed her on natural antifungal medications, including acidophilus to treat the yeast infection in the gut, which seemed to help. We also started her on a program of Diflucan and Nystatin, which are medications for fungal infections.

Treatment results: We were gradually able to take her off psychotropic medications and onto a full course of allergy immunotherapy, environmental controls, nutritional supplementation, and appropriate antifungal medications. She remains on Prozac only. Originally, she was getting sinus infections approximately every other month. Within 1 year of treatment with allergy immunotherapy, her sinus infections were completely under control. Within approximately 6 months of receiving allergy immunotherapy, most of MC’s tic disorder was gone and most of her other symptoms had also completely subsided.

Summary: Once MC began allergy immunotherapy and was weaned off the psychotropic medicines, most of MC’s symptoms were relieved by 6 months. Also, appropriate nutritional supplements and environmental controls may have played a major role immunologically. (We treated her as we did patients who are chemically sensitive, advising the family to avoid the use of fabric softeners, and all fragranced and toxic products for home and personal use.)

All of these improved environmental factors brought MC to below her threshold of (tic) reactivity. She was having much less respiratory, neurologic, gastrointestinal, and skin symptoms. MC’s regimen, once completely in place, included a comprehensive environmental approach:

  • allergy immunotherapy, including injections twice weekly for pollens, dust, molds, animal danders, and foods;
  • avoidance of allergen triggers, including highly allergic foods, animals, and chemicals;
  • environmental controls to reduce allergens in her bedroom;
  • nutritional supplements based on her biochemistry;
  • medication and natural supplements to treat a hidden yeast infection that affected her immune system;
  • education in understanding the environmental medicine approach to her complex multisystem tic disorder, with individualized attention, periodical fine-tuning, and care of the whole person.

As a result of treatment, her symptoms were controlled without the need for standard symptom-relieving medications.

The family’s account of MC’s recovery

Sheila J Rogers, Director ACN,  interviewed MC and her mother for this account

Serious symptoms

MC had such severe neuropsychiatric symptoms that the parents were told she should be hospitalized. The symptoms began when she was being potty trained as a toddler. She began withholding her stools and required treatment with three different stool softeners. At age 3 years, MC started the behavior of sniffing her food. Sniffing the food actually seemed more important to her than eating it. She also began making little noises, sometimes letting out a high-pitched scream. As MC was well-behaved, social, and bright, little was made of these behaviors; she “seemed to just be playing around.”

At age 3 years, MC had some speech articulation difficulties and received occupational therapy. In second grade, the teacher noted the beginning of MC’s academic difficulties and the abnormally long time it took MC to complete written work.

As MC’s behavior continued to change, meals soon became a battle; MC wouldn’t eat anything that had the “wrong” texture, preferring everything soft. She would wear only old clothes that felt smooth on her skin. She wore the same set of clothes for 2 years, because the feel of new clothes bothered her. Wearing shoes drove her crazy, and socks had to be seamless.

Ritalin and more problems

In fourth grade, MC was evaluated and found to be gifted but a learning disability was also revealed. A neurologist suggested that MC had attention deficit hyperactivity disorder and started her on Ritalin, though she didn’t seem hyperactive to her parents. Within 6 weeks, MC became verbally hyper, began banging her head on surfaces, and was on such “overload” that she would lie down on the floor at school to shut things out. She began withdrawing, and her tics worsened. She had already shown mild signs of obsessive compulsive behavior, but now it was much worse. Every time MC got in or out of the family van, she had to close and open the door a certain number of times and make special steps while walking. She also had trouble concentrating. Things were quickly spiraling downward. MC was taken off Ritalin, but the tics remained. She began to space out—particularly when exposed to fluorescent lights. She would describe this by saying, “My lights are going out.” She was evaluated and found not to have epilepsy.

Further medicating: MC’s mother shares

We made the rounds to doctors for work-ups—gastroenterologists, neurologists, psychiatrists; she underwent MRIs and other numerous tests. We ended up with a diagnosis of TS from one specialist and a severe tic disorder from another. MC was put on trials of medications, sometimes three at a time. She was repeating words, speaking rapidly, and making noises. Eye squints and head jerks were frequent. The mediations included Prozac, Clonidine, Zyprexa, Seroquil, Topamax, and others. We actually reached a point where we were treating the reactions to the medications! MC was often so sleepy that she had to be removed from the classroom in a wheelchair.

Although the tics were reduced, the cost of the side effects was too high. She was in therapy, but I never thought that was an answer. A school psychologist suggested that I quit teaching and keep her at home. A psychiatrist concluded that MC needed to be admitted to a psychiatric hospital! I refused their advice and tried not to let MC know how scared I was.

During the last significant drug trials in which MC was a participant, a couple of years ago, MC was put on Provigil, which resulted in major sedation and angry, defiant behavior. When a doctor observed her anger, he advised the family to have MC hospitalized. MC’s mother insisted that the anger was a reaction to the drug and began weaning her off of it. The anger ceased. However, at this point, MC was so distracted and spacey that she had to be dressed every morning. Everything became a major effort. She began not leaving the house, even to see a movie. The family couldn’t imagine what her future would be or how they would find the help they needed. (At this time they learned of environmental medicine and reached the office of Dr. Albert Robbins.)

In middle school, MC had to dictate answers to her school work to a parent, who would write them down.

“I got my sweet daughter back!”

According to MC’s mother, dietary changes, supplements, and treatment for Candida yeast overgrowth made a big difference in MC’s behavior. Allergy therapy was started and was very successful. MC is now only taking Prozac. MC’s mother added, “She’s doing fantastically. It’s been 3 years of restored health and I can’t believe it—I got my sweet daughter back! MC is 14 years old now, doing well in advanced classes in school, and working independently. She is socially adjusted and happy once more. She takes the recommended supplements and allergy injections without complaining. We stopped the psychotherapy because now that she’s off the drugs she doesn’t need it. When I look back I can’t believe the awful experience we all went through—all because of a Candida infection and allergies.”



Please Don’t Praise Me for Loving My Child With a Disability

It happens to most of us as we parent kids with disabilities, we hear statements like, “You are amazing, I could never do it.” “It must be so hard.”

I couldn't do it

Yes, it’s true, sometimes parenting kids with disabilities can be hard. We do have extra challenges that most parents of typical children don’t have to deal with, and our lives might look a little different than yours. But I hope you recognize that our lives look similar to yours too.

Can I be honest with you? Some of these comments – after a while – make me feel as if you think my child is not as lovable, and only certain people would be able to love my child or parent her. When you praise me for parenting my child, it says to me you feel fortunate she’s not your child because that would be hard and terrible and tragic. I know that’s not what you’re trying to communicate, I know that, but sometimes it does.

If I saw a friend with her typical child and I pointed at her kid and said, “I could never do it.” I think we would all agree it would be rude. That statement would say a lot about what I thought about her child, most likely not positive because I just said I could never do it. “What do you mean?” She’d probably ask offended. “I mean, it must be so hard to parent YOUR child!” Maybe right then she would have day dreams of punching me in the face. But I would not be surprised if she picked up her kid and walked away from me, offended, and reassuring her child he is loved, and wonderful, and she is lucky to be his mom.

It’s no different when I hear that. That’s how it makes me feel.

You see, the world tells us that disability is bad. When my youngest daughter was born with Down syndrome my midwife cried and the pediatrician shook his head and said he was sorry for giving us such bad news.

When we adopted our daughter who has cerebral palsy, a lady asked my husband, “Couldn’t you find a healthy one?”

Look back in history, we have not treated persons with disabilities as people. We have not treated them as equals. We still fight those messages and ideas today. Ask an adult with a disability how most of our society treats them, and think about how you would feel if you were judged based on your limitations. As the mother of two kids with disabilities, this pains me, because most people don’t know what I know, they don’t see what I see. They’re not part of our Friday night movie nights. Or our family vacations. They don’t see the pure joy of watching them dance and laugh and be kids. Disability is not a tragedy, what is tragic is how the world views disability.

I love my kids.  And I’m not extraordinary for loving them, I’m their mom! How could I possibly not love them? How could I possibly not be their advocate, their teacher, their greatest supporter? You don’t think you could do it? Yes, yes you could do it! You would do it because you love your kids. And I am who you would be if your child had a disability. Having kids with disabilities is not reserved for the special few. It happens to me, to you, to my neighbor, and to the millionaire. Disability is part of life.

Comments that praise me for loving my child suggest that while everyone else got high speed wireless internet, I’m stuck with dial up. I mean that stinks, dial up of all things! “So sad you can’t enjoy the internet or participate in social media like the rest of us, I could never do it, I could never do dial up. I know what high speed wireless internet is like, it must be so hard to wait for the dial while everyone else is already on Facebook.”

My child is not the least desirable option, she’s not dial up, she’s a person. She has a unique personality, gifts, talents, ideas, likes and dislikes,  a temper, a sense of humor, a big laugh, a tendency to melt my heart, and her arms wrap tight around my neck letting me know she loves me too.


Please, don’t hear me say I don’t want your support or encouragement, because I do. If you think I’m doing a good job, just say that, “Hey, you’re doing a great job.” If you think I look frazzled and you see my child is having some difficulties, I might be having a hard day, and if you really don’t know how I do it, chances are I might not know how to make it through the day either, so what about, “How are you doing?” Open the conversation, ask questions, let me know you care.

But please remember, I’m not amazing for loving my child, neither are you for loving yours. It’s what we do, we love our kids.

Look at your child, because you know no matter what happens, you will never stop loving your kids and you would do anything for them. If there was an accident and your child ended up disabled, you would care for them and love them just as fiercely as you do now.

I don’t feel I got the wrong end of the deal, I’m not stuck with dial up. I feel like the luckiest mom to call these kids my own. Please don’t praise me for loving my kids, they are lovable, they are mine.



What is it like being an Sensory Processing Disorder father

I am the father of a child with Sensory Processing Disorder (SPD). My son Woodrow, “Woody,” is now 23 years old. His diagnosis and treatment began when he was about 6 years old.


As with many fathers of my generation, I helped to raise my sons with my wife, but watched as my wife did most of the heavy lifting. My Father was the youngest of the “Greatest Generation,” and was as traditional as a father could have been back in the 60’s. I helped to raise my boys as a 2.0 version of my Father. I went to birthing classes and was in the delivery room when they were born.  I changed diapers, helped with feedings, babysitting, and fell in love with participating in their early childhood rearing.

But, I was preoccupied with my job and many of the observations of Woody’s early childhood were left to Mom. Having no real training manual for parenting, I was not fully aware of some of the early signs that Woody might have some sensory issues, or that could even be a possibility. I had old-school phrases such as  “late bloomer,” “quirky,” and “sensitive,” bouncing around in my head as Woody grew from an infant, to toddler, to grade-schooler. But, as with molecules, germs, death and The Kardashians, SPD has existed since the beginning of civilization. It just took someone to discover it.

When Woody first started going to the Star Institute, the facility was not the Star Institute of today and the condition known as SPD was not called SPD. The diagnosis and treatment was still in infancy. By the time my wife, Pam, started telling me about SPD, I was more than willing to consider it might be something affecting Woody. We were past the point of thinking that Woody would grow out of this.

Woody has always been very smart. As a child his verbal skills and verbal recognition were off the charts. I’m sure most parents think this about their child, but when Woody was not yet 2 months old, I swear he knew what was going on. He knew me, I knew him. I had such a strong sense of the man I thought he would grow up to be. He started talking at 9 months, and had such awareness it seemed as if he had been here before. Reincarnation entered my mind, though not seriously.  Woody’s brain knew life, while his body’s coordination floundered around like a machine with a short in the wiring. As it  turns out, that ended up being a decent analogy.

When exposed to too much stimuli, I would look at Woody, imagining that he was a computer and we had opened up too many applications, so the little hour glass would just twirl and twirl, trying to process all of this information. But instead of twirling and waiting, or flashing a “frowny face” on the screen, Woody would freak out. An inconsolable, melted down brain. He would cover his ears whenever he heard a noise he didn’t like, as most kids and people do – but it didn’t have to be very loud. Even worse, I started to watch him endure the ANTICIPATION for a loud noise to occur. The fact that it might happen had Woody literally covering his ears with the palm of his hands and squeezing his head like a vice, desperately trying to keep potential noises from entering his brain. He was on constant, high alert.

So, yes, by the time Pam researched SPD, I was very much on board. If brushing Woody’s arms and legs with a soft, plastic brush, and wrapping him up in a blanket like a burrito was going to sooth this little boy, I was all in.

Obviously SPD awareness has spread and treatment has made such great advancements since Woody was diagnosed. This is largely in thanks to the wonderful, brilliant work of Dr. Lucy Jane Miller and everyone at the Star Institute.

With so many medical conditions, each case, each child, each situation is so vastly different. The point of writing this is not to compare the levels or severities or situations. When “spectrum” came into my vernacular, it allowed me to identify more than rank. As for Woodrow, he is and has always been fully aware of his situation. As an “old soul” he seemed as relieved as we were to find out about SPD. We are blessed that he has the awareness, though the responsibility of being able to control or manage it can sometimes be doubly taxing and confidence crushing for him. It’s like he has another mind and body inside his own, where he is a conscious observer, only able to do so much about it. He is hyper aware of how non-SPD/spectrum people behave, and desperately wants to make his mind and body “be like them”, and can lose confidence in social settings because of it.

I’m saying this because Woody has and will always have my heart, because of his awareness . He knows why he suffers from extreme anxiety, paralysis of action, struggles with self-esteem, social interactions, and with school even though his I.Q. is chart-topping. His pain comes from being a caring, loving, empathetic and wonderful young man. He loves, and cares, and hugs, and misses, and kisses, and knows with the emotional part of his brain that feels. It hurts my heart and makes it swell because he has those abilities, when others do not. It’s not the easy way out – it’s the hard way out, but he has the ability to find that light, organize his brain, and walk through that door. Take a “Woody brain” and get it to the light, manage the issues, and you just might have an evolutionary brain. He’s not the only one; he’s just the only one that I know and love.

And, now, with the work that the STAR Institute, and his whole support group, I think he is starting to see himself as I see him.

We can love (both tough and easy), and push, and participate, and cheer, but ultimately it is up to Woodrow to figure this out. The STAR Institute, his Mom, his dear brother, and his wonderful friends all “get” Woody and have given him the tools and the opportunity to know, without a doubt, that he can succeed in life, and more importantly, be happy. He has the ability to be happy and live happy, and that is such a gift. But, it’s up to him. My heart can hurt for Woody, but it’s his heart that will determine his future.

What is it like being an SPD Father? It’s like being the Father of any child that you love and want to provide for their best opportunity. It’s challenging and wonderful, it’s hopeful and worrisome, but I know that I would not want Woody to be anything other than the man he is becoming. There is not an asterisk to being the Father of an SPD child. It’s just being a Dad, and being proud and humbled and blessed, regardless of the ups and downs of his journey. Parenting brings focus, protection, and action to the forefront, and other people, other situations, or anything outside of being there for your child no longer matters. Having the support and knowledge of the STAR Institute gave us an answer and then a goal, and now an idea of how to manage in the future…



delicious KETO COCONUT RASPBERRY CUPCAKES only 1g net carb

Sorry, it has taken me so long to share these Keto Coconut Raspberry Cupcakes. This was the final recipe for my Keto Valentine’s Day party plan, and they were a huge hit with the kids.

Easy Keto Coconut Raspberry Cupcake Recipe. LCHF Cupcakes - Easy to make and delicious!

Over the past month, I have gone back and forth with myself about choosing keto foods over the usual junk for our upcoming birthday parties and after seeing the kids devour these we will definitely be serving keto cupcakes (or possibly cheesecake) for all of the kid’s parties.

My husband mentioned that these were a little dry, which is his typical complaint with anything made of coconut flour. I’m thinking more eggs may help with this problem, but it’s going to take some experimenting to the test kitchen to see what we can come up with.

The frosting was my favorite part of this cupcake, and I may or may not have eaten the icing off of the two remaining cupcakes. I’ll never tell….

I also used the remaining frosting as a strawberry dip, and that was a delightful combination!

Keto Coconut Raspberry Cupcakes:

Keto Raspberry Fat Bombs

Keto Coconut Raspberry Cupcakes: Ingredients

For Cupcakes:
    • 1 Cup Coconut Flour
    • 1 Cup Almond Milk (Unsweetened)
    • 7 Large Eggs
    • 1/2 Cup Butter
    • 1 Tbsp Baking Powder
    • 3 Tsp Pure Vanilla Extract
    • 1/2 Tsp Salt
    • 3/4 Cup Erythritol
    • 1/2 Tsp Liquid Stevia
For Frosting:
  • 16 oz Cream Cheese
  • 28 Fresh Raspberries
  • 1 Cup Butter
  • 1 Tbsp Pure Vanilla Extract
  • 1/4 Cup Erythritol
  • 1/2 Tsp Liquid Stevia

Keto Coconut Raspberry Cupcakes: Directions

For Cake
    1. Preheat oven to 350
    2. Powder Erythritol in a food processor
    3. Mix all ingredients in a large bowl and mix until well blended
    4. Pour into silicon baking cups and bake for 28 – 30 minutes (until toothpick comes out clean)
For Frosting:
  1. Melt butter
  2. Mix all ingredients in a large bowl until light and fluffy


    For Cupcakes:
      • 1 Cup Coconut Flour
      • 1 Cup Almond Milk (Unsweetened)
      • 7 Large Eggs
      • 1/2 Cup Butter
      • 1 Tbsp Baking Powder
      • 3 Tsp Pure Vanilla Extract
      • 1/2 Tsp Salt
      • 3/4 Cup Erythritol
      • 1/2 Tsp Liquid Stevia
    For Frosting:
    • 16 oz Cream Cheese
    • 28 Fresh Raspberries
    • 1 Cup Butter
    • 1 Tbsp Pure Vanilla Extract
    • 1/4 Cup Erythritol
    • 1/2 Tsp Liquid Stevia


    For Cake
      1. Preheat oven to 350
      2. Powder Erythritol in a food processor
      3. Mix all ingredients in a large bowl and mix until well blended
      4. Pour into silicon baking cups and bake for 28 – 30 minutes (until toothpick comes out clean)
    For Frosting:
    1. Melt butter
    2. Mix all ingredients in a large bowl until light and fluffy.

    Keto Coconut Raspberry Cupcakes: Nutrition

    This is for one cupcake with frosting (makes 16) – Note: The frosting recipe makes enough frosting to frost 32 cupcakes so you can always cut it in half if you don’t want to use the rest as a dip.

    Calories: 225
    Total Fat: 19g
    Carbohydrates: 6g – 3g Fiber = 3 Net Carbs
    Dietary Fiber 3g
    Sugars: 1g
    Protein: 5g

    Baking Tips: Any time I bake keto cupcakes (both savory and sweet) I bake them in silicone baking cups. The fat and butter in most keto cupcakes will destroy cupcake wrappers and cause any color in them to bleed all over the place. After I baked these, I removed them from the silicon cups and let them cool on a cooling rack, after they cooled I put them in cupcake wrappers. Silicone baking cups are great because the food doesn’t stick to them, so it’s easy to make beautiful cupcakes every time.

    To make all of my cupcakes the same size I use this Wilton Cupcake Measuring Cup. Not only does it create a beautiful cupcake display it also helps keep all servings equal, which matters if you like accuracy when tracking your food (I tried to warn you, I am OCD!).

    I picked up most of my decor at Hobby Lobby (in case you are wondering). Remember, the holidays can be a great time to introduce your family to the ketogenic lifestyle. It took me two holidays to convince my parents that keto living isn’t that hard. 🙂



10 Surprising Ways to Deal with Trichotillomania

Image result for trichotillomania

I haven’t stopped pulling. Nor do I have the cure.

But, I do know how upsetting, belittling, heartbreaking, soul destroying and life consuming this disorder is. I know what it feels like you can’t do something out of fear you may start pulling out your hair. I know what it feels like to see people looking at your eyebrows, wondering why they’re so drawn on. I know what it’s like to be outside in the wind, hoping that your false lashes aren’t going to fall off. I know what it’s like to constantly worry about your eyebrows rubbing off during the day. I know what it’s like to worry about what your eyelashes look like from the side. I know what it’s like to look down to a pile of little hairs on the desk. I know what it’s like to have that one little hair that you desperately need to pull out. I know what it’s like to pull out that one single hair that was stopping you from having a bald patch. I know what it’s like to pull so much that you’ve irritated your skin and eyelids to a point where it hurts to blink. I know what it’s like to feel as though everything you do is so much harder because you have the added the challenge of trying to not pull out your hair.

I know what it’s like to lose all of your beautiful eyelashes and thick eyebrows.

You’re not a freak, you’re not weird, you’re just one of thousands of people who have a Body Focused Repetitive Behaviour Disorder.

Trichotillomania Updates
During the summer, I managed to grow my eye brows back but by August I started pulling on my eyelashes. I was waiting for quite a big decision at the end of August/early September and I think it was the lead up to that that got me pulling on my lashes. It has been quite upsetting for me to start pulling out my lashes again, as I hadn’t done so since the summer of 2014.

From September until now, I hardly pull out my eyebrows. They grew back really thick, so thick that I actually really struggle to look after them. I definitely think that Rapid Brow helped, I always felt like the brows grew back quicker when I used that. Unfortunately, they came at the expense of my eyelashes.

For the past six months, what happens is that I’ll go through a period of a few days where I pull like crazy, leading to massive bald patches in my eyes. Then, it’s an uphill battle of trying not to pull at all and waiting for the lashes to grow back in again. This period is the absolute worst.

I had pulled a lot at the start of October, and they had started to grow in a lot by December but then I had three important essays in for January. In those last two weeks before the essays were in, I absolutely destroyed my lashes. I had pretty much no lashes on one lid and it was pretty devastating. Not only do I not like the look of it, it was also really hard to wear false lashes.

I’m in a bit of a better place now, a month on. Those lashes have started to come through and I don’t have any significant bald patches at the moment. I’m trying incredibly hard to not pull and I am playing the waiting game. I am so sick and tired of wearing winged liner and false lashes. Hey ho, I’m trying my very best and I hope some of my techniques help you as well.

Ways I deal with Trich
  • Cover up the area 
This will come as no surprise to anyone. Covering up the area reduces the availability of the hair to be pulled, reducing hair pulling. BUT, it also breaks the cycle of hair pulling. The less hair pulling you do, the better in the long run. Covering up the area isn’t just masking the problem, it does actually help you kick the habit for good.
Things I use are:
– Cotton Headbands
– Glasses – I recently got prescribed some as I was going a little blind and they’ve helped SO MUCH. I was using fake glasses (from Claire’s) beforehand and they worked as well.
– Sleeping Masks – I’m not the biggest fan of these because I find them annoying but if I’m desperate, I will always reach for mine.
These are just for eyelash and eyebrow pullers. I’m sure there are a thousand other things that can cover up the area, but it is each to their own. What works for me, may not work for you.
You can also cover your fingers/hands but I’ve always found this impractical. Some people use thimbles, little grips, plasters or gloves. I have seen a lot of long false nails helping as well. Again, you have to find out what works for you.
  • Castor Oil
There are other kinds of oil available as well, such as coconut oil. Putting this all over my eyelids when doing work helped so much before Christmas. Now that I have to wear glasses to do work, I no longer need the Castor Oil during the day. It works as a barrier to the lashes/brows, when they’re all slippery it’s difficult to actually pull a hair out. It’s also REALLY annoying to get oil all over your hands, even less of an incentive to pull! On top of that, Castor Oil helps with regrowth of lashes. I put it on before going to sleep most nights as well.
  • Keep your hands busy
Some people use fidget toys, some people knit etc you get the idea. Anything you enjoy doing that keeps your hands busy, get them in your life. Preferably something that needs two hands. For me, watching TV or doing something where I don’t really actively have to do anything, are some of the worst times for me to pull. I do need to get a replacement, but at the moment I just play games on my phone. My farm game is definitely my favourite at the moment. Otherwise, I do enjoy liking photos on Instagram. Basically, I use my phone to keep me busy. Although this works a little bit differently, but I really enjoy doing my makeup as a way of keeping my mind off pulling.
  • Exercise and Healthy Eating
This goes without saying that it’s good for you. By doing exercise, your stress levels are lower, which means that you’re less likely to pull. At least, that’s the case for me anyway. It is also another activity where you can’t pull your hair out. It is win, win, win, win, win. You feel better, you look better, you pull less? What’s not to love about a 10km run in the rain!
Healthy eating, again, I don’t need to give you a lecture about how it’s good for you. Eating a lot of vegetables will help with regrowth of hair as well. Eating meals regularly also helps. I find that alcohol, especially on a hangover, can make hair pulling worse as well. A regular sleeping pattern helps too!
  • Talk to someone
I can’t stress this enough. Please talk to someone. A problem shared is a problem halved (is that the saying? it looks weird written down…). I can’t even count the amount of times that people have messaged me saying they’ve never spoken to anyone about it before. I would advise talking to someone who you love and trust, perhaps a parent, partner or best friend. These people are in your life for a reason, they want to know these things and they will not reject you for being a ‘freak’. Because you are not a freak, and neither am I. Venting to people helps so much, please do not bottle all of these feelings in.


  • Keep a trich diary

Keeping a diary of how much pulling you’ve done, what you were feeling, any foods that may have set you off etc can help you figure out your triggers. You can then try and minimise those triggers, thereby reducing hair pulling.

  • Stroking a pet
Stroking my cat is one of the best things for me, she’s soft, she likes it, stops me pulling and it’s relaxing. I hate being in uni because I don’t get to hang out with Daphne, but if you were considering getting a pet, then there’s your excuse! (I have a post about Adopting My Cat if anyone happens to want to read it!)
  • Make time for fun
Life is stressful. I like to have one night a week where I get to eat and do whatever I want. I look forward to that all week then as well. It’s only little, but the prospect of fun on the weekend makes dealing with a bad day/my workload a bit better. I have had to accept that I can’t just do my degree 24/7.
  • Deep breaths
I try to do this in the middle of a pulling session. It helps take my mind off whatever I’m doing, distracts me and also relaxes me. If this doesn’t really work for you, it’s probably time to get up and do something else.
  • Positive Thinking
Thinking positively definitely helps me. My hair pulling is always much worse if I think thoughts like “I can’t do this”, “I’m going to be stuck with this forever” etc. I don’t want this disorder, so I’ve had to cut out all of the negative thinking. No one can do it for me, I have to do it myself. I’ve cut out every single shed of insult and only say nice things to myself and after a while, you start to believe it yourself. Then you see results. YAY POSITIVE CYCLE. Don’t be hard on yourself either, this is a loooooong uphill battle, it’s hardly surprising if you pull out a few hairs, you just have to keep on trying.
No one ever achieved something amazing by telling themselves they couldn’t do it. 
 These are some of the things that I do to help myself from pulling out my eyelashes and eyebrows. I know they won’t work for everyone, but it is unfortunately an uphill battle and you have to be creative with ways of dealing with this horrendous disorder. I know it’s hard but we can do it.