Tales of Play at the Stump

Many of Portland’s Western Red Cedar trees are dying due to climate changes. In the park near our home, it has happened to many of them in the past twelve months. The only good thing that came out of it was The Stump. One particular stump we found is now “our stump” and L and G love to play on it. They’ve played on it on cloudy days, on sunny days, and in the rain. It is hard for L to play with G on any focused activities with coloring or building. But physical play is usually easy and lasts a pretty long time.

Autism and GAPS Diet, Picky Eater!

Gavin has never had GI problems. He usually makes a bowel movement a few times a day and he has always been like this. He was only constipated a handful of times in his five years of life.

For this reason, we don’t believe fully that he has any problems with his gut. We tried inulin once, and it actually made his bowel movements a strange green color, hard and chalky, and that helped tally up those times of constipations in his life. I’d try it again now though since he is a little older to see what would happen.

We tried nystatin even though he had an OATS test that was negative for yeast. It did seem to help because I think it was reducing inflammation, but not necessarily getting rid of yeast.

He has been dairy free for over two years now, but I am not sure if it has made a difference. A few times we gave him regular yogurt again or tried cottage cheese again. Maybe we will just bring it all back.

The GAPS diet has been the only interesting diet that does seem to have helped a lot of kids (and adults) but many of these things he is just not ready to eat.

  • Focusing on fruits and vegetables: A 2016 study involving 122 people showed that eating fruits and vegetables can prevent a potentially harmful strain of bacteria from growing in the gut.
  • Including probiotics: Probiotics contain many beneficial bacteria. One study suggests that eating probiotic yogurt may help lower blood sugar levels among people with metabolic syndrome.

Stage 1

In stage 1, the diet consists of:

  • homemade meat stock
  • boiled meat or fish
  • well-cooked vegetables
  • probiotics, such as fermented vegetable juices, yogurt or kefir, and homemade fermented whey
  • ginger or chamomile tea with raw honey
  • purified water

Stage 2

In stage 2, add the following foods:

  • raw, organic egg yolks
  • casseroles made with meats and vegetables
  • fermented fish
  • homemade ghee

Stage 3

In stage 3, add the following foods:

  • avocado
  • sauerkraut and fermented vegetables
  • GAPS pancakes
  • scrambled eggs made with ghee, goose fat, or duck fat
  • probiotic supplements

Stage 4

In stage 4, add the following foods:

  • roasted or grilled meats
  • cold-pressed olive oil
  • freshly pressed carrot juice
  • GAPS milkshake
  • GAPS bread

Stage 5

In stage 5, add the following foods:

  • cooked apple purée
  • raw vegetables, such as lettuce and peeled cucumber
  • pressed fruit juice

Stage 6

In stage 6, add the following foods:

  • raw, peeled apple
  • raw fruit
  • increase honey
  • baked goods sweetened with dried fruit

After completing the introduction diet, many people move onto the full GAPS diet.

2. The full GAPS diet

During the GAPS diet, avoid all grains, sugars, starchy vegetables, refined carbohydrates, and processed foods. This stage lasts 18–24 months but is individualized and may require less time for some.

Acceptable GAPS foods include:

  • eggs
  • meat, fish, and shellfish (fresh or frozen only)
  • fresh vegetables and fruit
  • garlic
  • natural fats, such as olive oil, coconut oil, and ghee
  • a moderate amount of nuts
  • GAPS baked goods made using nut flour

The GAPS diet also recommends that people:

  • use organic food as often as possible
  • avoid all processed and packaged foods
  • eat fermented food with every meal
  • drink bone broth with every meal
  • avoid eating fruit with meals
  • combine all protein food with vegetables, which the theory says will keep body acidity levels normal

People can eat the following foods on the GAPS diet:

  • meat stock (cooked shorter than broth and contains less glutamates)
  • meats, preferably hormone-free or grass-fed
  • fish
  • shellfish
  • animal fats
  • eggs
  • fresh fruits and non-starchy vegetables
  • fermented foods and beverages
  • hard, natural cheeses
  • kefir
  • coconuts, coconut milk, and coconut oil
  • nuts
  • dry wine
  • white navy beans

Foods to avoid on the GAPS diet include:

  • sugar and artificial sweeteners
  • syrups
  • alcohol, but adults can have a glass of dry wine occasionally
  • processed and packaged foods
  • grains such as rice, corn, wheat, and oats
  • starchy vegetables, such as potatoes and yams
  • milk
  • beans, except white and greens beans
  • coffee
  • strong tea
  • soy

Sample GAPS diet meal plan

Start the day with one of the following:

  • a glass of filtered lemon water and kefir
  • a glass of freshly pressed fruit and vegetable juice

For breakfast:

  • GAPS pancakes topped with butter or honey
  • one cup of lemon and ginger tea

For lunch:

  • meat or fish with vegetables
  • one cup of homemade meat stock
  • one serving of probiotics, such as kimchi, sauerkraut, yogurt, or kefir

For dinner:

  • homemade vegetable soup made with meat stock
  • one serving of probiotics, such as kimchi, sauerkraut, yogurt, or kefir

Apraxia and Autism

Some children with autism should undergo ongoing screenings for apraxia, a rare neurological speech disorder, because the two conditions often go hand-in-hand, according to researchers. It’s estimated that one in 68 children in the United States has autism and one to two in 1,000 have apraxia.

Please be aware that just because a child with autism is nonverbal does not mean that he has apraxia; apraxia is not necessarily the cause of a lack of speech in a child with autism.

How might you be able to tell if this child is nonverbal because of apraxia, as opposed to the child being nonverbal because of autism? I would look for signs of oral-motor and limb apraxia. If this child’s apraxia is so severe that he cannot generate phonation at will, then you likely will see apraxia in other motor systems.

——————————

Childhood apraxia of speech (CAS) is a motor speech disorder. This condition is present from birth, and it affects a child’s ability to form sounds and words. 

Children with speech apraxia often have far greater abilities to understand speech than to express themselves with spoken words.

The majority of children with childhood apraxia of speech will experience significant improvement, if not complete recovery, with the correct treatment.

Apraxia refers to the difficulty someone has initiating and performing the movements needed to make speech. This difficulty arises despite the fact that there is no weakness in the necessary muscles.

Childhood apraxia of speech rarely occurs alone. It is often accompanied by other language or cognitive deficits, which may cause:

  • Limited vocabulary
  • Grammatical problems
  • Problems with coordination and fine motor skills
  • Difficulties chewing and swallowing
  • Clumsiness

Experts do not yet understand what causes childhood apraxia of speech. Some scientists believe that it results from signaling problems between the brain and the muscles used for speaking. Ongoing research is focusing on whether brain abnormalities that cause apraxia of speech can be identified. Other research is looking for genetic causes of apraxia. Some studies are trying to determine exactly which parts of the brain are linked to the condition.

Childhood apraxia of speech may be a part of a larger disorder a child has, such as:

  • Cerebral palsy
  • Autism
  • Epilepsy
  • Galactosemia
  • Certain mitochondrial disorders
  • Neuromuscular disorders
  • Other intellectual disability

There is not a single test or procedure that is used to diagnose childhood apraxia of speech. Diagnosis is complicated by the fact that speech-language pathologists have different opinions about which symptoms indicate the condition.

Most children with apraxia of speech benefit from meeting one on one with a speech-language pathologist three to five times a week. They may also need to work with their parents or guardians to practice the skills they are developing.

Therapy for childhood apraxia of speech aims to improve speech coordination. Exercises may include:

  • Repeatedly practicing the formation and pronunciation of sounds and words
  • Practicing stringing together sounds to make speech
  • Working with rhythms or melodies
  • Using multisensory approaches, such as watching in a mirror while trying to form words or touching the face while talking

Speech language therapy is the main treatment for apraxia of speech. SLPs often use a variety of methods to treat it. Your child’s SLP might try methods such as:

  • Articulation or phonological therapy
  • Adapted cueing technique
  • Orofacial myofunctional therapy
  • Prompts for restructuring oral muscular phonetic targets therapy (PROMPT system)
  • Biofeedback treatments

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Apraxia

Apraxia is a condition that interferes with an individual’s ability to develop, execute, and sequence motor movements. The neurological impairment has three forms:

  • Motor involves movements in the hands or the entire body.
  • Verbal involves the muscle movements necessary for speech.
  • Oral involves movements not associated with speech and articulation such as puckering the lips or sticking out the tongue.

Subdivisions of Apraxia

  • Apraxia, Buccofacial
  • Apraxia, Classic
  • Apraxia, Constructional
  • Apraxia, Ideational
  • Apraxia, Ideokinetic
  • Apraxia, Ideomotor
  • Apraxia, Motor
  • Apraxia, Oculomotor

Limb-kinetic apraxia is the inability to make precise or exact movements with a finger, an arm or a leg. An example is the inability to use a screwdriver notwithstanding that the person affected understands what is to be done and has done it in the past.

Ideomotor apraxia is the inability to carry out a command from the brain to mimic limb or head movements performed or suggested by others.

Conceptual apraxia is much like ideomotor ataxia but infers a more profound malfunctioning in which the function of tools is no longer understood.

Ideational apraxia is the inability to create a plan for a specific movement.

Buccofacial apraxia, (sometimes called facial-oral apraxia) is the inability to coordinate and carry out facial and lip movements such as whistling, winking, coughing etc on command. This form includes verbal or speech developmental apraxia, perhaps the most common form of the disorder.

Constructional apraxia affects the person’s ability to draw or copy simple diagrams or to construct simple figures.

Oculomotor apraxia is a condition in which patients find it difficult to move their eyes.

Apraxia is believed to be caused by a lesion in the neural pathways of the brain that contain the learned patterns of movement. It is often a symptom of neurological, metabolic, or other disorders that can involve the brain.

Apraxia is caused by a defect in the brain pathways that contain memory of learned patterns of movement. The lesion may be the result of certain metabolic, neurological or other disorders that involve the brain, particularly the frontal lobe (inferior parietal lobule) of the left hemisphere of the brain. In this region, complex, 3-dimensional representations of previously learned patterns and movements are stored. Patients with apraxia cannot retrieve these models of stored skilled movements.

Oculomotor apraxia is a dominant genetic trait. The gene for this condition has been mapped to chromosome 2p13. Each chromosome has a short arm designated “p” and a long arm designated “q”. Chromosomes are further sub-divided into many bands that are numbered. For example, “chromosome 2p13” refers to band 13 on the short arm of chromosome 2. The numbered bands specify the location of the thousands of genes that are present on each chromosome.

Genetic diseases are determined by two genes, one received from the father and one from the mother.

Dominant genetic disorders occur when only a single copy of an abnormal gene is necessary for the appearance of the disease. The abnormal gene can be inherited from either parent, or can be the result of a new mutation (gene change) in the affected individual. The risk of passing the abnormal gene from affected parent to offspring is 50% for each pregnancy regardless of the sex of the resulting child.

Some cases of apraxia are congenital. When a child is born with apraxia it is usually the result of malformations of the central nervous system.

Treatments

  • Behavioral: ASSIST

Integral stimulation based treatment (“watch me, listen to me, say what I say”) for CAS that is based on principles of motor learning and neuroplasticity and includes a systematic approach to adaptive practice. Treatment includes a focus on prosody, use of visual, tactile, auditory cues, slowing speech rate, and large amounts of practice.

  • Therapy is delivered in a face-to-face format. The therapist uses picture stimuli, verbal modeling, feedback, reinforcement, forward-chaining to increase verbal production. For speech errors that occur, the therapist uses modeling, feedback, reinforcement, simultaneous production, articulatory instruction, and repeated practice to improve articulation.
  • Transcranial Magnetic Stimulation (TMS) Non-invasive brain stimulation, high frequency repetitive TMS delivered in 10 sessions over a 2-week period.
  • All patients will see a Neurologist for a neuro exam and consult, see a Speech Pathologist for assessment of speech and language skills, see the Study Coordinator for neuropsych testing (brief tests of thinking, memory, visual spatial skills, etc), undergo an MRI of the brain and a DaTscan of the brain.

Kindergarten Readiness with Autism in Mind

I was going through photos and found an old screenshot of a kindergarten checklist before L went to kindergarten. I remember when I read this and didn’t really think much about it. But I kept it to refer back to. Turns out, almost three years later, I am reading it again and thinking about Gavin.

Raising an eager learner is the goal, and it can be achieved easily through play and day to day activities. Here are the top readiness skills that kindergarten teachers look for:

  1. Excitement toward learning – I can say that G is definitely excited to learn things and wants to.
  2. Talking about thoughts and feelings – This is something that does not yet make sense to G.
  3. Listening to others – In the past two years, this has improved greatly for G.
  4. Desire to be independent – He definitely has this!
  5. Playing well with others and taking turns – G works on this in therapy, and overall has a lot more patience now. But this item is something he needs a lot more practice with.
  6. Following simple instructions – This is also so much better than a year ago!
  7. Ability to hold and use a pencil or crayon – G was really, really good at writing letters and all numbers last summer and the year before that. He lost this ability in the past year and we have got to get it back.
  8. Recognizing numbers and letters – This is 100% already accomplished.

If I read this checklist just one year ago, I would not have wrote the answers above. He has changed a lot and I am happy to say that having 5 of 8 items basically checked is wonderful. I am very confident if we can take care of the other items that he can be ready for kindergarten, with assistance, for fall of 2021.

Conquering the Breakfast Nook Fear

For a couple of years, G does not sit at the breakfast nook. Something about the way the cushions move, or how high the benches are – he doesn’t want to sit here. Even though his legs are so long now, and so close to the floor at the edge of a cushion, he is really terrified of being here. When we try to sit him on the bench, his body becomes stiff as a board and he grabs us, fingers digging into us for dear life. Today we got him to sit with me to eat lunch there, finally. But now we have to do it everyday for lunch until he can sit without crying. By looking at these pictures below you wouldn’t think he was screaming about being there just moments before. After we were done eating he pointed to the floor to ask to leave and scooted right off. About an hour later I asked him to sit there again and he ran away. Our goal is to have him sitting here with us all the time, happy as a clam, climbing out, looking out the window, and feeling great. So here we go.

Day 1:

Autism Supplements

A Year Really Has Made a Difference

A year ago today, I was pretty down. This is the post I wrote where I mentioned how G was scratching us, sleeping poorly, among other things.

While no big miracles happened with his stem cell injection, or any of his supplements (or the break we had from them all), I am happy that we have still tried a lot of new things in the past year. I am feeling more comfortable – and less down.

We still have a ton of supplements and medicines in our cereal cabinet. From cromolyn sodium, to TRS spray and our newest addition of nystatin, we are getting somewhere, and G is happier and better than ever at this very moment. I kept asking myself, is it really true? The answer is yes.

When I dropped him off at therapy today, he was strongly seeking my approval when he put his jacket on the coat hooks. I am focused on basic life skills lately, just so he can take care of himself, and he usually gets upset when he can’t get his hood on the hook. Today when he finally got that coat on the hook, he got super close to my face, stared deep into my eyes and waited for me to say good job. He smiled and ran off happily to look for a toy. It was a big defining moment of how he really is changing. And for that today, I am happy.

Plus spring is coming. He needs sun on his face and long walks again. We all do.

G, In Five Years

Tomorrow is your birthday. You are a positively sweet, snuggly, smart and stubborn guy. There is no one like you on this earth. I look back at the last five years with so many different feelings. My biggest feeling is that I am proud of how hard you work to learn and to manage your feelings every single day.

“He’s still only two and a half,” I would say at those first doctor’s appointments with G. I wanted to help him right away and thought it would happen fast. It felt like we were so early and we had so much time. He stopped eating a variety of foods and would push them away. He was not talking or even pointing at things.

“He’s still three,” I said at the next appointments. He did not sleep well and woke up multiple times a night. He would cry, I would cry. He had breakdowns over small things and the worst part was that he could still not talk or communicate to tell us what he wanted or what was wrong. We took him to an occupational clinic and he was afraid to walk on their floor because it was a different color in every room. He cried and screamed. We worked through it and he overcame his fears. But then he didn’t want to get on the swing or climb on most of the equipment. He was upset still more than he was happy. We decided to look into ABA and focus on his diet and supplements to help him get better. Really we were grasping at dials in the dark. In the big picture he could do many things so well for a three year old, he could write numbers from 1-10 and was an iPad wizard. But through all of his learning, he was always battling his overwhelming feelings and sensory overload. That was all in the way of G being able to be completely and simply G. My research on autism, its causes and treatments, was daily and nightly.

“He’s still only four,” were my words at more handfuls of appointments. But now things were solidifying: we found the right ABA clinic, had so many more doctor’s appointments and did so much more research. He was better and more calm. He was learning ways to play instead of gravitating towards toys with numbers and books with numbers. He started using Proloquo on the iPad and very well. We could communicate and he could do more than grab our arm and pull us somewhere. We could ask him questions, and he could choose what he wanted. He got better with routines, bedtime improved, everything improved. He started sleeping through the night finally. He was no longer interested in some things he used to be good at, like writing numbers, but it wasn’t a priority at the ABA clinic or at home. With G, you really have to get into routines and repetition to keep him going or he might lose the skill, but that is like any kid really so I try not to worry about how that goes.

“He’s still only five,” will be the words I say at his first appointment of 2020, next week at an immunologist clinic here in Portland. I am interested in going down the road of investigating the possibilities of autoimmune encephalitis and allergies causing inflammation in his brain. We have had so much progress, and when you write it all down, it can be seen by anyone. But it’s hard to see it at times when you see him developing new OCD tendencies. He has now been at the same ABA clinic for one entire year and it’s all amazing progress. G drinks from a cup now and we have retired his Camelbak bottles with the straws he would chew through over and over. He is able to stop using an iPad or stop watching TV by us just saying “let’s take a break” and he walks away without any breakdowns.

We got him SMOs (Supra-Malleolar Orthosis inserts for his shoes) last month to help him to stop walking on his toes and make sure he doesn’t have a short heel cord. He actually doesn’t mind wearing them and it seems like it will go very well. So we are excited about that too – plus when he wears them it seems he focuses more on where he is going and what he is doing. Maybe he is thinking less about what his toes are telling him.

There are still so many more things we can try to help G. There are so many people helping kids and adults with autism all over the world. I see countless statements like this on websites:

The Council’s vision is to enhance the lives of individuals with ASD across their lifespans.

What would help individuals across their lifespans the most? To ease or remove their symptoms. This has been going on far too long to not be able to go to one doctor as soon as you know something is going on and get help right away, instead of struggling through hoop after hoop for years without any real direction. I am really happy when I see a news article about another airport opening a sensory waiting room, or sensory emergency rooms at hospitals, and special bathrooms, etc. but what I really want is to cure these individuals who cannot speak and who are caught in such nets of sensory overload. All of these rooms and special places are reactive. I want preventive.

During all of these happenings, and all of the moms and dads researching every day about their kids, posting in Facebook groups, and sometimes silently suffering through another day of worries and hopes, life is going on. And G is working hard each day. He goes through his therapy days and still comes out of that building with a smile on his face.

G’s next five years will surely be miraculous, no matter what. Happy Birthday, little nugget.

Gavin Will Be 5.

I haven’t wrote here since June. That feels like a lifetime ago now. My mom died in July. Then the other months just tick tocked along the line. My oldest son and I just got back from a long visit with my dad. My eyes are still puffy and vision is blurry as I look at this screen. I think it’s a combination of travel and allergies. It was such a good and busy trip, especially for my son and for my dad. They both really needed it. I did too of course but sometimes I feel like a puppeteer adjusting everyone’s happiness. (That’s one definition of a parent.) I’m still getting back to normal even though I slept really well. I had a lot on my mind this morning that I needed to figure out. Most of it is about Gavin. He will be five in January and I am simply scared. I want him to talk. I want him to love and be loved. I want him to experience life as we know how to experience it. With autism I know that’s a hard order to fill. And “normal” life for everyone else It’s not always roses but I want him to travel, read, experiment, and be himself. I’d be happy if he became a surfer, or a fisherman, or a nurse, or a food truck cook, or a domino player. It could be the most random damn thing I’ve ever heard of. But I just want him to be happy. 

As I watched my oldest son blossom in maturity during our trip to see his grandpa, I had a tug in my heart for my youngest son to have those moments too. We haven’t even been on a trip together yet. Are trips necessary at this young age? No. But I would like to. I think he would too. And I know there is a way to get him more connected in our world. But how?

For the past five years, we have logged many hours into doctors offices, labs to draw blood, different therapy offices, and the most hours have just been in the car going back and forth. All the while, I tried to give all I could to our oldest son for treasured memories and to capture the innocence of his childhood. Even though my husband and I were always hurting to not see our sons experience all of this as a pair, a team – as “normal” brothers. As Christmas approaches right now, I really don’t have so many precious things on my mind. It’s because I feel like I am losing time. Most of my thoughts revolve around everything logical, real and solid. Doesn’t sound very romantic or whimsical does it? My oldest son is now seven but is already far wiser than his years. And my youngest, although still hanging on to the number four, is much the same although there have been big changes in the past year. They are close in age but they are becoming farther apart in their connection to each other as my oldest soars on in his own development. 

As I juggle these feelings of holidays and the special moments I crave, this year I feel more like a warrior on a mission. I haven’t sat down and planned out the Christmas list for everyone or surprises I have in mind. I haven’t really started buying or making anything to make magic happen. (Okay, I did buy some felt gnomes to hold silverware on the table, but that’s it.) One thing I have done is order two new DNA tests for my husband and I. We’ve done one in the past but I am ready for fresh and new information. Plus I need the info on my BRCA genes so I can start getting tested early for risk of breast cancer, since my mom passed away this year from it. If you don’t take your health into your hands, no one else will. Time is the most precious and magic thing on my mind this holiday. There are only so many of these holidays left to celebrate with your *young* children. There are only so many wild summers left and quiet autumns. The faster I can get Gavin more on track with his communication and awareness, the faster my husband and I can feel like both our boys are together and connected to us in a deeper way. I want that so much.

So step one for this round of trying to accomplish this is controlling the health of myself and my husband. Our kids need us to be around in order to help them thrive. I can’t wait for those tests to come in because they are the peak of getting started again and knowing our baselines. 

  1. tests
  2. schedule check ups, bring our test info
  3. diet, exercise and supplement changes

The next step is Liam. He needs to go to vision therapy in the new year, and we need to practice math, etc. The et cetera is to enjoy being a kid. Easy enough. 

For Gavin: two main things. I want him to see an immunologist, or several of them. And I want to try autologous stem cell transplantation. So far he is seeing Immunologist #1 on January 13th. She seems to be really good and if she can’t answer all of our questions, I hope she can send us to another person who will. As we dig deeper during the year of 5, I need more real answers and less hope to’s in my book.

I read this quote recently, and I think now at 35 I am finally able to live this way:

Real growth is when you start checking and correcting yourself. Instead of blaming others, you take your power back by being responsible for yourself.

It doesn’t matter anymore how exactly Gavin got autism, or how exactly my mom got breast cancer, or how exactly my husband’s vision doesn’t allow him to live a normal life much of the time. These are all things I have researched to no end, and I hope to help others once I figure out the why’s. But right now all I can use my energy for is for fixing what I can and preventing anything worse.

Vaccines. Autism. What to believe?

People are worried about babies under 1 eating honey – I mean, they yell NO, NO, NO HONEY!

But having multiple vaccines every month or two when you’ve barely been out of the womb seems like a piece of cake compared to eating a sticky gel made by insects?

I have a lot in mind for what I want to write, but need more time to figure out how to put it more delicately and carefully. For now this is just a placeholder.

Stem Cell Treatments for Autism

When I was having my first son, L, I was asked to sign some paper to donate my cord blood. It’s all a blur really. They may have mentioned that I could bank the cord blood in case we needed it later. I considered at the time that cord blood was for “diseases” and “serious reasons” that probably would never happen to us. But really, as I said, it’s a blur. No one ever told me about cord blood, or stem cells, or the reasons to bank it. I had other things on my mind at the time, like delivering a healthy baby. I didn’t think too much about what would happen right after, or even in the years ahead. As a first time mom, at least for me, it was all about that moment. I didn’t have a friend or a relative that ever used cord blood, I never heard much about it.

Fast forward to having my second son, G, I must have signed something again to donate the cord blood at birth. I remember having a pamphlet given to me at that time. It may have had info about personally banking it, but I remember the feeling everything gave me was more about donating it. And of course I wanted to donate – so signing everything was no big deal. I think even my placenta was donated that time.

We started becoming more and more interested in stem cells. Many kids with autism were having injections of stem cells via IV and having wonderful results. For some, nothing happened.

We did it for G and it really seems like nothing happened. He had cells from Utah Cord Bank injected into the vein in his arm. But we have no way of telling if something silently repaired itself a little, because it’s not like he started talking. And his sensitivities are still mostly off the charts at times.