I’ve spent a few days mulling over my feelings on this blog and it’s responses.  My thoughts were everywhere, ranging from if I couldn’t get a good christian woman’s help or sympathy I’m really doomed in this society, and wondering just what kind of good christian woman she really is, to just being immensely saddened at how  my son and the parenting style I am forced to use will be viewed and judged by everyone I encounter.  I’ve often bolstered myself by saying it’s not my fault society doesn’t understand us, its societies’ problem for being unable to embrace our differences and gifts.  But it hurts. People will only see the negative and not realize just how much work it took to even be there and not having a total meltdown.  So what do we do?   I don’t know.  Even Autism Awareness doesn’t seem to be working, as one of the comments on that blog misquoting in context Temple Grandin ’s comments about teaching polite behavior demonstrates.  Let’s not forget that at four, Ms. Grandin didn’t speak, was prone to tantrums, liked ripping things and stimmed.  Yes, she learned social behavior, but not by 4, and not without infraction.

We have to teach our kids to be social, but out in society!  Out in public the assaults on their nervous system is so intensified, that even though we have talked about it at home and in the car it’s not as effective as actual practice.  I see myself, hopefully, one day to the point of the Grandmother and the “coddled” little girl at the library. Discussing something as abstract as patience with my son, and while maybe not at the level to appease the snippity, knowing how far we’ve come from the days when every public outing ended in tears, running and screaming.

Also, the blog reminded me how we’ve been treated in public before.  I’ll share the story of two  nurses, because you would think they would be aware of autism and other delays in children.  Both stories happened just prior to receiving my son’s diagnosis.

The Tale of Two Nurses

It was my son’s two-year well-baby check up, only he wasn’t very well.  He had yet another double ear infection that day.  He also hated going to the doctor, in my mind, learned behavior from the surgery he had when he was just a bit over a year old.  By the end of the visit, he was beyond control.  The assembly line medical care provided by the military clinic resulting not in patience but forcefully restraining my son as to get the exam done in the alloted time.  As he had the ear infections, we couldn’t just leave after, but had to wait for the pharmacy at the clinic to get his medication, and I needed to schedule a follow-up.  My son was so out of control I couldn’t hold or soothe him.  He hit and bit  and wiggled and kicked.  I held his arm while he screamed and tried to go boneless to slip from my grasp.  I did happen to notice that running seemed to soothe him, and since nothing else was working, I gave in and let him do a few laps.  (In hindsight, this was vestibular input, probably even more out of whack due to his ear infection).  At this point a nurse came up to me and told me I had to get him under control or she would report me to patient administration and have us barred from the building.  I was about at my wit’s end, had a rude retort for her and then locked my son and myself into one of the private bathrooms used for obtaining samples and had a good long cry.  When I came out, the patient advocate was there along with a man in uniform who helped us get through getting the medicine so we could leave.

Just a few weeks later my son had to be examined by a orthopaedist.  Only this time he started his meltdown the moment we entered the building.  I was trying to juggle soothing and distracting him while filling out the patient intake forms.  Only this time a nurse came out after a few minutes of watching me struggle.  She spoke in a very friendly and soothing voice to my son and helped distract him so I  could do the paperwork.  Everything about the entire visit went more smoothly at that point, and it just took a little compassion and help as opposed to harsh judgements.  A few weeks later, we did receive the autism diagnosis, and I have since learned coping and parenting skills but even that is not perfect.  When other parents and adults step up to help it makes a big difference, both for my son and me.  I may try my hardest, but I’m still just a single mom who needs help.

Genetics testing revealed no known genetic markers for Cade’s autism.  However, it was very comforting to find out that if I do decide to have another child one day, that I am at no higher risk to have another spectrum child than is the general population.

The biggest gain from the psychology courses I tortured myself with last semester were from my Exceptional Children class.  Now I had already gone through the processes of writing an Individualized Family Service Plan (IFSP) and I had just completed stage 1 of his Individualized Education Plan (IEP), but this class gave me further insight into the law, what equality for exceptional children means, and programs that have shown success in the schools.  Hopefully I never have to fully utilize this information, as I now have a wonderful IEP team.  Again, kudos to his chair for being on the ball with the year-round autism classroom (5 slots total, just to give perspective on how coveted this class is).  I visit with the new teacher next Monday on February 8th.

We have a great new toy!  My brother, who has long worked with autistic and special needs children, sent him a Bilibo:

Doesn’t seem like much but it’s a chair, a rocker,a stool, a bucket, an oversized hat to play peek-a-boo with, a cave for toys, it’s sensory and imaginative play in a simple design.  Cade likes to put it over his head and then chants ”Where’s Tade?” (his way of saying Cade) then rips it off dramatically and screeches with laughter.  He also used it to get to my coke I had set on the counter out of his way! 

We’re continuing to see great progress on the magnesium and B6 supplements.  Cade’s speech therapist noticed his changes immediately.  She commented that he seems to be absorbing so much more.  At one point, he was looking around the room and taking everything in, and she said that it was as if he we really seeing the room for the first time.  Now that’s a big difference!  I then filled her in that he had started a new supplement and she got the details for her nephew with autism, as she was so impressed with the differences in Cade.

I have some peace on the direction of interventions we are taking.  Not going to add anything new in until behavior therapy starts.  He’s still adjusting to the magnesium and I want to document his gains to see what’s working.    After that, I’m thinking of trying another supplement that’s supposed to help with language, L-Carnosine. You can find the study here:  http://www.autismcoach.com/Carnosine%20Study.htm.

I still dream of Captola’s house, but I usually feel peaceful when I wake.

Last night, on day 3, he fell asleep without crying (pretty rare).  He proceeded to sleep 12 hours straight.  Twelve hours is about what he should be getting at age 3, so this is nice.  He’d been sleeping between 8 and 9 hours, and nothing I did seemed to improve this number.  He woke up this morning all smiles!  His stimming behavior has been significantly reduced.  He’s calmer and more focused this morning.  I’m sure the proper amount of sleep was a part of the positive changes too.  I hope this trend continues!

Further reading!  http://autism.healingthresholds.com/therapy/vitamin-b6-and-magnesium

What is it?

Vitamin B6 (pyridoxine) is an essential vitamin that is necessary for more than 60 biological processes in a healthy human body. The body converts vitamin B6 into pyroxidal-5-phosphate (PLP), a compound that is used to release energy from carbohydrates and starches, and to break down proteins. PLP is also used in the production of important chemicals in the brain ⁽¹⁾.

Magnesium (Mg) is an essential mineral that is necessary for the health of every cell in the body, including the proper functioning of brain and muscle cells. While, magnesium deficiency is rare, some research suggests that children with autism may have too little magnesium ^{(2 3)}.

Some parents supplement a child’s diet with a combination of vitamin B6 and magnesium as an alternative therapy for autism.

What’s it like?

Vitamin B6 and magnesium supplements can be purchased online, or from almost any grocery, drug, or health-food store (see Resources).

Vitamin B6 is found in many foods; avocados, liver, nuts, chicken, fish, wheat germ, and bananas are good sources of the vitamin. Vitamin B6 is often included as one of many vitamins in a multivitamin supplement, but check with your child’s pediatrician before starting a supplement. Vitamin B6 supplements can be taken every day, but may be difficult to give to children, since some children may find that vitamin B6 tastes bitter in tablet or powder form. Liquid B6 supplements are also available and may be better tasting ⁽⁴⁾. Doses of vitamin B6 in research studies varied from 0.6 mg/kg/day (about 10.8 mg/day for a 40-pound child) ^{(3 )}, to 30 mg/kg body weight/day (about 545 mg/day for a 40-pound child) ^{(5, 6)}.

By comparison, the U.S. recommended daily allowance (RDA) for vitamin B6 is 1.3 to 1.7 mg/day for adults, and 0.5 to 0.6 mg/day for children ages 1 to 8 years old ⁽⁷⁾.

Magnesium is found in many foods, but is especially plentiful in green vegetables, seeds, nuts, and whole grains. A supplement containing magnesium can be taken every day, but check with your child’s pediatrician before starting a supplement. While it is not clear what the proper dose for children with autism should be, research reports used a dose in the range of 6 to15 mg/kg/day (or about 108 to 270 mg total daily for a 40-pound child) ^{(3, 8)}.

For comparison, the U.S. Daily Reference Intakes for magnesium is 320 to 420 mg/day for adults, and 80-130 mg/day for children ages 1 to 8 years old ⁽⁷⁾. Some parents supplement magnesium by giving their children Epsom salt (magnesium sulfate) baths. While magnesium can be absorbed through the skin, it is hard to say what dose of magnesium a child is getting from an Epsom salt bath.

If you choose vitamin B6 and magnesium as an alternative therapy, ask your child’s pediatrician about the dose appropriate for your child. Vitamin B6 can cause upset stomach when not taken with a meal, so also ask a physician to provide a sample schedule for taking B6 and magnesium (see Is it Harmful?).

What is the theory behind it?

The enzyme that is used to break down vitamin B6 into PLP may not work as well in children with autism ^{(4, 9)}. PLP is needed for the production of dopamine, a brain chemical that is very important for many behaviors ⁽¹⁾. If children with autism are not producing enough PLP from the vitamin B6 they have in their diets, then supplementing with extra B6 may help boost the production of PLP to more normal levels ⁽⁹⁾.

Children with autism can have significantly lower levels of magnesium in hair and blood than non-autistic children ^{(2, 3, 10)}. There is evidence that magnesium supplementation can have a calming effect on some children with attention-deficit hyperactivity disorder (ADHD) ⁽¹¹⁾.

Aside from the necessity of magnesium for the overall physical health as well as the proper functioning of the brain, there is no specific theory about how magnesium deficiency could contribute to autism. The two supplements are often given together, as some researchers have reported that the side effects of vitamin B6 treatment are eliminated by magnesium ⁽¹²⁾. However, studies in which vitamin B6 was used alone did not report any adverse side effects ^{(8, 13)}.

Does it work?

There is some controversy surrounding the evidence for the effectiveness of vitamin B6 and magnesium in autism ⁽¹²⁾. Two small but well-controlled studies showed no effects, positive or negative, of combined vitamin B6 and magnesium therapy ^{(14, 15)}. One larger, but less well-controlled study showed positive and significant behavioral effects of combined vitamin B6 and magnesium, but not vitamin B6 or magnesium alone ⁽¹⁴⁾.

Additional studies showed that vitamin B6 and magnesium had significant positive effects on behavior in children with autism ^{(3, 8, 16, 17)}. There were, however, major problems with the designs of these studies. In particular, the researchers in these studies knew that the children were receiving supplements. Therefore, their ratings of the children’s behavior could be biased. However, one of these studies did include another small, double-blind, portion suggesting that vitamin B6 and magnesium therapy can improve behavior in some children with autism ⁽¹⁶⁾.

The difference in outcomes of the various studies could be because vitamin B6 and magnesium results in positive behavioral effects for about half of those who try the therapy ⁽¹⁸⁾. Another explanation is that vitamin B6 and magnesium supplementation is not effective. The better-designed studies suggest that this may be the case, although these studies were so small, it is difficult to draw conclusions from them ^{(12, 18)}.

Is it harmful?

Vitamin B6 can cause nerve problems at high doses (in adults, over 2g/day) ⁽¹⁹⁾. However, studies of children with autism taking vitamin B6 and magnesium have reported no significant side effects ^{(4, 14)}. Furthermore, in children with epilepsy who had been taking high doses of vitamin B6 or PLP (900 mg for a 40-pound child) for six months, no significant side effects were reported ⁽¹³⁾.

Magnesium can be toxic at doses greater than 600 mg a day. However, studies using magnesium supplements at moderate doses (around 200 mg a day) have not reported significant side effects ^{(8, 11)}.

Check with your child’s pediatrician before starting treatment.

Cost

A bottle of 100 multivitamin tablets containing B6 can cost anywhere from $10 to $40, and a bottle of 100 tablets of magnesium supplements at 250 mg per tablet can cost anywhere from $5 to $20. Prices depend on the store and the brand of the supplement.

Magnesium and vitamin B6 can come in several forms; ask your child’s pediatrician which forms are best for your child.

Resources

Healing Thresholds has partnered with Webvitamins. They have a large selection of top quality vitamins and supplements.

Vitamin B6 and magnesium can be purchased online or in a drugstore. They can be included in a multivitamin supplement or they can be purchased individually. Supplements can also be found online, sometimes at a discount.

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References

1. Holman, P. 1995. “Pyridoxine – Vitamin B-6.” Journal of Australian College of Nutritional & Environmental Medicine 14(1):5-16.
2. Strambi, M., et al. 2006. “Magnesium Profile in Autism.” Biol.Trace Elem Res 109(2):97-104.
3. Mousain-Bosc, M., et al. 2006. “Improvement of Neurobehavioral Disorders in Children Supplemented with Magnesium-Vitamin B6. II. Pervasive Development Disorder-Autism.” Magnes Res. 19(1):53-62.
4. Adams, J.B., and C. Holloway. 2004. “Pilot Study of a Moderate Dose Multivitamin/Mineral Supplement for Children with Autistic Spectrum Disorder.” J Altern.Complement Med. 10(6):1033-1039.
5. Rimland, B., and S.M. Baker. 1996. “Brief Report: Alternative Approaches to the Development of Effective Treatments for Autism.” J Autism Dev Disord. 26(2):237-241.
6. Hunsinger, D.M., et al. 2000. “Is There a Basis for Novel Pharmacotherapy of Autism?” Life Sci 67(14):1667-1682.
7. U.S.Department of Agriculture. 2009. “Food and Nutrition Information Center: Dietary Guidance.” USDA National Agricultural Library.
8. Martineau, J., et al. 1985. “Vitamin B6, Magnesium, and Combined B6-Mg: Therapeutic Effects in Childhood Autism.” Biol.Psychiatry 20(5):467-478.
9. Adams, J.B., et al. 2006. “Abnormally High Plasma Levels of Vitamin B6 in Children with Autism not Taking Supplements Compared to Controls not Taking Supplements.” J Altern.Complement Med. 12(1):59-63.
10. Fido, A., et al. 2002. “Biological Correlates of Childhood Autism: Trace Elements.” Trace Elem Electrolytes 19:205-208.
11. Starobrat-Hermelin, B., and T. Kozielec. 1997. “The Effects of Magnesium Physiological Supplementation on Hyperactivity in Children with Attention Deficit Hyperactivity Disorder (ADHD). Positive Response to Magnesium Oral Loading Test.” Magnes.Res 10(2):149-156.
12. Nye, C., and A. Brice. 2005. “Combined Vitamin B6-Magnesium Treatment in Autism Spectrum Disorder.” Cochrane.Database.Syst.Rev. (4):CD003497.
13. Wang, H.S., et al. 2005. “Pyridoxal Phosphate is Better than Pyridoxine for Controlling Idiopathic Intractable Epilepsy.” Arch.Dis.Child 90(5):512-515.
14. Findling, R.L., et al. 1997. “High-Dose Pyridoxine and Magnesium Administration in Children with Autistic Disorder: an Absence of Salutary Effects in a Double-Blind, Placebo-Controlled Study.” J Autism Dev Disord. 27(4):467-478.
15. Tolbert, L., et al. 1993. “Brief Report: Lack of Response in an Autistic Population to a Low Dose Clinical Trial of Pyridoxine Plus Magnesium.” J Autism Dev Disord. 23(1):193-199.
16. Lelord, G., et al. 1981. “Effects of Pyridoxine and Magnesium on Autistic Symptoms-Initial Observations.” J Autism Dev Disord. 11(2):219-230.
17. Rimland, B., et al. 1978. “The Effect of High Doses of Vitamin B6 on Autistic Children: A Double-Blind Crossover Study.” Am J Psychiatry 135(4):472-475.
18. Pfeiffer, S.I., et al. 1995. “Efficacy of Vitamin B6 and Magnesium in the Treatment of Autism: A Methodology Review and Summary of Outcomes.” J Autism Dev Disord. 25(5):481-493.
19. Schaumburg, H., et al. 1983. “Sensory Neuropathy from Pyridoxine Abuse. A New Megavitamin Syndrome.” N.Engl.J Med. 309(8):445-448.

http://www.sciencedaily.com/releases/2010/01/100126220331.htm

ScienceDaily (Jan. 27, 2010) — Children as young as five months old will follow the gaze of an adult towards an object and engage in joint attention, according to research funded by the Wellcome Trust and the Medical Research Council. The findings, published January 26 in the Royal Society’s journal Biology Letters, suggest that the human brain develops this important social skill surprisingly early in infancy.

Joint attention — where two people share attention to the same object — is a vital human social skill necessary for many types of human behaviour such as teaching, collaboration, and language learning. Impairments in this skill are one of the earliest signs of autism.

Dr Tobias Grossmann and Professor Mark Johnson from Birkbeck, University of London, used a technique known as ‘near infrared spectroscopy’ (NIRS) to examine which areas of an infant’s brain are activated when paying joint attention to an object.

NIRS, an optical brain imaging technique which involves measuring the blood flow associated with brain activation, is well-suited to study freely-behaving infants. With this non-invasive technique, near-infrared light travels from sources on a sensor pad located on the head, through the skin, skull and underlying brain tissue, and is then detected by sensitive detectors on the same sensor pad.

In the experiment, conducted in Birkbeck’s Babylab, the babies were shown the computer-animated image of an adult’s face. The adult would make eye contact with the baby, raise her eyebrows and smile, glance towards an object at her side, back to the baby and then finally turn her head to face the object. In the control conditions, the adult would look away from the object or would look at the object without making eye contact with the baby.

The researchers found that only when the babies engaged in joint attention with the adult, they used a specific region of their brain known as the left prefrontal cortex — an area to the front of the brain involved in complex cognitive and social behaviours.

“Infants engaged in joint attention use a similar region of their brain as adults do,” says Dr Grossmann, a Sir Henry Wellcome Postdoctoral Fellow. “Our study suggests that the infants are tuned to sharing attention with other humans much earlier than previously thought. This may be a vital basis for the infant’s social development and learning.”

“In the future this approach could be used to assess individual differences in infants’ responses to joint attention and might, in combination with other measures, serve as a marker that can help with an early identification of infants at risk for autism.”

Journal Reference:

1. Grossmann T and Johnson MH. Selective prefrontal cortex responses to joint attention in early infancy. Biol Lett., 2010

Cade never demonstrated joint attention as an infant, and actually it is a struggle for us even now that he is over three years old.  Add this to my breastfeeding issues, and Cade’s issues with lack of constant movement, and his aversion to groups of people and I see the signs of autism spectrum disorder very very young.  Very young as in the hospital immediately following his birth.

I don’t really know that much earlier detection would have significantly helped him, but it would have helped me tremendously!  As most people are, I was woefully ignorant as to what autism really is.  I was also a first time mother, who had no other experiences to draw from.  I suffered  so much anxiety, stress and depression over my perceived inadequacies as a mother.  Not to mention just the difficulties of raising an ASD child on my own, especially without the knowledge of his true issues.

The more I learn about Autism the more I find peace with myself over the struggles of raising Cade.  But there is more.  I wish the pediatrician had known more, I trusted him.   I wish my parenting classes had included a section on autism so I could have recognized the signs.  As in a previous blog, I wish lactation consultants had been aware of sensory issues.  All my wishes point to one thing, there is a definite need for education at all levels.  We have to make this happen.  I think I smell a good letter to my senator!  Spread the word.

So although we had to endure a very stressful day to get this, it will relieve stress in the long run, for both of us. I’m pretty excited.

I’ve been struggling the past couple weeks with finding a good mix between too little or too much interventions for my son.  On one hand I understand doing everything in your power, but on the other hand, I just want my son to be happy.  I also understand that early interventions are best. But I think a  huge part of being a happy pre-schooler is just having free open time just to be who he’ll be and play.  I recently saw a television program following a family through the journey to find working interventions.  Honestly, as I watched this story unfold on television, the thing that stood out in my mind the most, was poor kid, he just seems so poked and prodded.  How can one tell which intervention is working when you’re doing a dozen or so at once?  It just felt so invasive to me.

On the other hand, those offering well-meaning advise often makes me feel inadequate as a parent.  No I’m not yet doing bio-med interventions.  I haven’t read all the best books yet. I can’t afford developmental therapy right now.  But I’m not sticking my head in the sand.  I just have my own philosphy of how to implement things.  In the past Eight months we’ve added in speech therapy, occupational therapy, full-time preschool, a father moving out of state, and a toy overhaul.  It may not seem like much but I like to observe my son and see how he does with each change and allow time to adjust.    I started with a very happy toddler, and I don’t want to change that because at age two-and-a-half he received the label of autism.

Everything  isn’t perfect, we go through phases where he stims more, or shows physical frustration with crashing or headbutting.  He still cries at occupational therapy. He has regressed to eating with his hands again.  Even though it’s not perfect, I’m really happy with the progress he has made, especially socially.   He has gone from avoiding other kids, to playing side-by-side to actively engaging them in play. He keeps adding words to his vocabulary, and has started putting two words together more often.  I’m not sure where we’ll go next, or how long it will take for me to observe if the intervention is working.  We’re still working out a good sensory diet, and this week I’ve stared therapeutic brushing at home, along with essential oil massages.

I’m struggling between recovery and acceptance.   The bad thing is that part of me believes in both.

I was pleased to see Cade immediately pick up on the differences and take interest in it.

Visit and comment for Ms. Milne! 

http://www.youtube.com/watch?v=9Nu_Z_ogVj0

Today’s mainstream toys seem designed to ensnare the senses and not stimulate them.  They enrapture children rather than encourage imagination. Play seems less exploration and more entertaining.   This would be ok if play was just unwinding, but to a child, play is work.  The work of growing and learning.  While children grow so does their nervous systems.  With TV and video games and hi-tech toys are we stunting our children for normal sensory development?

Some great toy recommendations from me, the mother of Cade, autistic 3-year-old:

http://www.amazon.com/Rainbow-Waterfall-Visual-Treat-Adults/dp/B000AS208C

Rubber, bean filled reptile toys found in the discount toys section of target.

spinning tops, my son loves to watch these go round and round.

bucket o wooden blocks, found anywhere, most recently at big lots for 7 dollars by me.

Bowling games, I love the one we have above, different textures, sounds and of course, the fun of crashing the ball into the pins!

good old-fashioned play dough.

stuffed animals of different textures and types.

Just a few, if you would like more recommendations by me, I’d be happy to tell you some of our other favorite, sensory inducing toys!

I bought a doctor’s kit and we proceeded to examine first every stuffed animal in the house.  Then he examined me, then I him.  At the doctor’s office, I would ask to be examined first, and I would smile and repeat about how helpful doctors and nurses were.  At my appointments, I would ask the doctor (and she is wonderful) to talk through the exam, and then to give my son a mini-exam.  We got books at the library, then the Doctor Calliou video.  The results have been great.

We still have anxiety at doctor’s appointments, but if they take my suggestions and work in a certain order, things get done!  If the medical professional is relaxed and kind, takes things slow, they will get the exam done.  What irks me is the people who are amazed that I can get my son through a doctor’s exam the way I do.  Well, it doesn’t irk me until they display disbelief more than once. 

Just this week I had a nurse practitioner seem almost disbelieving that my son had autism because he allowed her to look in his ears.  I explained we had done quite a bit of roleplay and work to get him to that point.  She didn’t seem to care much, then still proceeded to say how odd it was he allowed the exam.  I got irritated.  The tone wasn’t amazement at how he had progressed, but more accusatory that my son didn’t have autism.  She kept saying he was better than most three-year olds.  But honestly, how many other three-year olds have parents who spend HOURS teaching them how to behave at the doctor’s office.  I felt like asking her, “does he look at you?”  “Is he talking to either of us?”  “Do you see him fidgeting with his hands?”

He behaves in the doctor because I found a way to make it work.  And it was work, lots of it.  We did desensitization, roleplay, finding routines and order of business that works.  So I really resent it when I come in, explain he’s autistic, and suggest the way the exam will work best,  and then get treated with disbelief. 

I’m proud of my son, and myself over the progress we’d made.  Maybe I just wanted a pat on the back instead of disbelief.    But most of all I just want to remind everyone that autistic people can learn!