New Updates 4-27-2013

This week has been a super crazy week for us.  My son’s school was on lockdown for the second time this year (http://www.mlive.com/news/detroit/index.ssf/2013/04/gunfire_in_harper_woods_leads.html) and he had seizures this week, 3 on Thursday, 4 on Friday and 2 today.  They appear to be tonic-clonic seizures(http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/parents/infants/tonicclonic.cfm)

Which is more information than what the neurologist has ever given me.  If that is the case then the medication that he is on is not going to help (not like it really was anyway). So I’m looking into some natural methods to help him.  Other than the seizures he has been doing quite well but he we have a lot of work that we will be doing over the summer.

Jai Lynn has been doing……great as far as being able to verbalize and converse with us.  Today was very memorable.  She has a difficult time regulating her voice and she is not good with inflections and all that human stuff that we do.  She doesn’t get that smacking her lips or moaning are inappropriate behavior. Long story short, she got very upset  tonight because she was redirected by dad and it wasn’t “nice”. So, she begun to cry. So I seperated them (not literally  and I went into her room and we talked.  I gave her re-affirming statements to repeat, “I am beautiful, I am smart, I am loved” then I had her to tell me two things that she was thankful for today and she said that I made sandwiches and that she had a chocolate covered strawberries.  And that got her to smile, telling me what she’s thankful for always gets her to smile.  Once she calmed down she and dad made up and all was right with the world.  After dad left the room she and I talked for a minute.

She said “I have to worry about myself mom” and I told her yes that that her brothers where not her responsibility to care for and that she didn’t need to feel the need to always be concerned about what they did or didn’t do because mom or dad would always find out. Plus, she was a great big sister that loved and cared for her brothers and that she is doing a great job.

This summer with her I think social awareness skills and self-esteem are going to be on the top for learning this summer for her.

This is why I am homeschooling next year because although she’s learning academics (loosely) the social piece is…somewhat lacking.  She mainly has issues with self esteem and some depression.  I take ownership in some of the mental struggles that shes having, because I was having them also and I am working on them now.  So as I build myself up I build her up.  I want her to learn lessons now and not take 30 some odd years to get it.  That is way I am thankful that I am on this journey, I was meant to go on it now.  I’m happy that she and I are doing it together because it gives me the opportunity to be a true example.

So that is what is going on with us as of late.  I’m getting my cards ready for Mother’s Day and Graduation’s, I have vendor shows coming up so I am a very busy girl.

Until next time

Charmaine

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April 11, 2013 and beyond!

So I have been away for a few weeks it’s been a bit crazy around here.  I was preparing for my business open house for Thirty One and Stampin’ Up! and I was also preparing for my first day of class.  I’m huge on schedules around here so I had to re-configure my business and academic life into my schedule and I figured while I was at it I might as well add in the homeschooling schedule because summer will be here before I know it and so will fall.  I have decided to create my own curriculum as I am not enthused with the two internet based schools that I found, plus my gut is telling me that my kids will learn better with something completely tailored to them.  You might think me crazy but I enjoy having my children home with me.   So what you wonder has been going on in the Fuller world of Autism?

Let’s start with Jai Lynn Spring break was a great time for us we worked on multiplication, subtraction and general overall household chores.  We worked on and still are working on her not apologizing for everything.  Learning that when you make a mistake to apologize once but don’t continue doing it. Once is enough. She is doing 1 tsp of the Divine Child drink, Serrapeptase, castor oil wraps, clay bath acetyl l carnitine.

This summer we’re going to dig deep with reading comprehension. Although, she can read at a 6th grade level she can only comprehend at about a third, she retains about one quarter of what she reads. She is not very good at all at simple recall.  The main reason I’m thinking of pulling her is that  middle school is a completely different monster   Many more kids, classes just bigger and that is a lot.  She can’t even tell me clearly what went on at school that day.  And that concerns me that she doesn’t have simple recall skills.

Jai Lynn has come a long way in the department of self-care but she still has a ways to go.We are still learnin how to deal with emotions and not go from 0 -1000 in 30 seconds flat.  But progress is being made.  A gain for her was this morning we were running late mainly because she was playing aroud in her room versus getting dressed and eating her breakfast.  When we got in the car she asked where we late and I stated “yes” and she said I’m sorry for doddling (from little Bill it means being a slowpoke). Then today after a melt down she said mom I’m sorry for yelling.  When she has meltdowns (which isn’t too often) she’ll often make negative statements like “I’m such a fool, I’m stupid, I’m a loser” so I’ve been taking those times to pump her with positive affirmations, we have also been doing positive affirmations before she gets out of the car.

Marcus, Jr has been doing well. Spring Break was a great , no seizures.  He worked on math and reading fluency. Same supplements as Jai Lynn including Min-Chex.

Some gains that he is making is in his cognitive ability.  We just started Luminosity which is a brain training website, you get some games for free the rest along with some other tools are available with the subscription, we will be getting the subscription by the way for both kids because they both need it.

This week so far he has had four seizures (three yesterday, one today) a bout of bad gas, and grinding his teeth.  The new Divine Child drink has tamarind in it to detox them from fluoride poisoning (yes the stuff in our water and toothpaste that they said would help is poisoning us and our children) and it also has kelp which is a great source of iodine.

Today he had a castor oil wrap and clay bath and is doing much better. It appears to me that he is detoxing from the new divine child drink and that we should see more gains. He has been very alert all day, although alert his focus has been a bit off today which it normally is after a seizure.  This seizure was different than anyone one I have seen. Then I started to think, maybe it is because I never truly observed his seizures my “fight or flight” went into play and my main concern was getting him someplace safe. But it appears that he is having General Tonic-Clonic Seizures.  So now that I have a pretty good idea that it’s not absence seizures I can move forward (which is why we are using Luminosity). Something he did last night that made me keep the faith is, when his curtain fell I asked him where was the piece that went to it. I heard it drop on the floor but didn’t see it where I thought it would be.  After I finished attaching the curtain he tapped me on the shoulder and pointed directly to the piece! So super proud of him.

 

Mason is growing by leaps and bounds and his language is doing great he can say mamma, daddy, bro bro,sissy, GiGi(that’s my mom) and trying to teach him PaPa. He knows who each of the people are, and he can identify and say his (and yours) nose, ears, mouth, head,teeth, and other body parts. Whenever someone doesn’t give him his way he says their name the says a bunch of baby talk in the middle then the name of whoever he’s reporting to so for example Daddy insert baby talk here Sissy.  So that would mean he’s telling on his sister lol.  He knows how to ask for food items that he wants and can read facial expressions like the guy from the show “Lie To Me” (If you haven’t seen it look it up). We are learning shapes, numbers, colors, counting and alphabet.

 

So as you see we are super busy here but I love it.  We have some exciting events coming up in the near future that I will report on and so much growth on the horizon.

Until Next Time,

Wishing you Blessings & Recovery,

Charmaine

*side note I was just elected as an at-large delegate to the Michigan Special Education Advisory Committee State Advisory Panel!

What’s Going On? 3/15/13

So, we are back on the protocol, kinda. This week has been a week of catch up for me still muddled with things I’ve obliged myself to. I honestly need to learn the lesson not to volunteer for anything during the week and during the day.  I don’t know what possessed me to volunteer to RUN the school book fair.  But, that’s neither here or there on to my beautiful wonderful kids.

This week has been challenging for my two older kids and the two year old is just progressing along.

Jai Lynn:

Just about everyday for the past week, Jai Lynn has been saying she doesn’t want to go to school. That it’s too noisy, too crowded and too big.  I first made sure that she wasn’t being bullied then I went into action. So we are having her leave a bit early from her classes before everyone else to lessen some of that hallway anxiety.  She’s been doing a great job with her work.  On her MI ACCESS test (a stupid test they give every year) she has improved greatly from last year she is almost at level in math and surpassed in reading.  We are still working on comprehension because although she can read at a sixth grade level, she can only comprehend at about a third grade level.  So I am working on tools that we can use for the reminder of the school year and summer to get it together for her and close the gap.

I’m not even going to say what supplements she took this week because I’m still not on track and some days we did everything we had and other days she did not. If she wasn’t in the supplement line in the am she missed out.  I am very short on time in the morning and don’t have time to track a kid down to take a supplement.  Once I get back into my “groove” it will get easier.

 

Marcus, Jr:

He has had a pretty good week. Teacher said he has been doing great on his work and that he can now count money up to $2.00 using coins.  He has had 2 seizures this week, both were at school, the first was on Tuesday and  he had to come home because I didn’t send in his usual jogging pants that he likes to wear after his seizures I sent in jeans. So that made him very upset and he had to come home.  Also, on that day he was still having nasal drainage and  some coughing.  So I brought him home, put him in his jammies and let him relax.  He had another seizure today, I took in the jogging pants so he stayed at school and had a pretty good day afterwards.  When he got home I noticed that his eyes are a bit red and that the tips of his ears are red and warm. The eyes are a sign of detox the ears are a sign of some sort of allergic reaction so he had some stuff going on.

Today in the grocery store he was very easily re-directed, when he started to get less focused he came back to me to hold my hand, he helped me out in the store (I do that to keep him busy and keep him from becoming  so distracted) and he listened so well.  I had to put this in writing so on a tough Autism/ADHD day I could come back to this post and see how far he has come and I could remember how great he is as a kid and how much potential he has.

Same supplement story for him.

Now today I did start the castor oil wraps back up for both and the coconut keifer.  I don’t know what I did to my milk keifer because it’s gummy, I think when it really warmed up for those few days last week it threw it off a bit. That change in temp messed with my keifer production. But we will get that back on track.  I have not started my kombucha yet hoping to start it this upcoming week.

I am learning to not beat myself up when I can’t follow the protocol like I should.  I do what I can when I can and I keep it moving.  The Divine Child drink has a new ingredient in it Tamarid and it helps detox the body from fluoride poisoning.  I have also taken out the toothpaste with fluoride, next is our water.

When you are battling Autism, Epilepsy, G6PD, or whatever your loved one faces, remember you are only human, and sometimes your going to miss giving a supplement or medication, everything is not going to be on schedule no matter how well you pencil it in.  Be OK with not being perfect, be OK with being tired, be OK with just wanting to enjoy your kids where they are sometimes.

Always try and find the good in your child, it’s there.  I’ve shifted my thinking for my sons, instead of saying, “he’s so bad” or “he’s never focused” or “he’s just a mess to “my God boy you are super curious, let’s help you discover” I’m learning to help them discover a world that they have never known.  It keep me from going mad and it keeps them wanting to learn and happy.  I work on my son’s a lot because they are the most work.  Even though the two year old isn’t Autistic or anything else he is still a handful.  Funny but sometimes it seems as if he and my older son are at the same level mentally so it’s often like having a two year old and maybe a 5 or 6 year old double teaming me. My daughter is “cool in the breeze” our largest struggle with her right now is, handling her emotions and keeping her cool.

The kids haven’t meditated or done yoga in a while so we have to get back on it soon, I think a lot of our issues stem from them not having that inner peace on lock.

Well, that is all that is going on with my family.  I’ll be starting classes soon along with running a business and a household. I’m learning to shift my thinking and get somethings together. I’ll do a me blog post later.

But kids are doing OK, we’re not where we would like to be but we’re sure as heck not where we where and that my friends is a great thing.  Looking forward to more gains with all three kids and looking forward to sharing our victories and defeats with you all.

Until next time

Wishing you Health, Wellness and Recovery,

Charmaine

Quick Update

So this is a quick update on how the kids are doing:

Marcus Jr had a doctors appointment today and when he got his blood pressure taken he sat still. NEVER NEVER EVER EVER has he done that. My husband said that he sat still while he cut his hair! He did a lot of his homework without me having to prompt him to move on.  Despite the seizure this morning he had a great day.

Jai Lynn did her homework without prompting, meaning I didn’t have to ask her if she had any and what she had.  She came to me and asked me to sign her assignment book and the assignment that she completed.  I asked her some Who, What When questions she nailed them. She nailed  who the main characters where and she got the supporting characters.

Mason knew the color blue when asked and he did a good job sharing at play group today and  waiting his turn.

Today was a great day for the kids

Love and Blessings

Charmaine

Week One Updates

So we have been going strong for a week with Dakhari’s Protocol.  The only elements missing are the ever important probiotics but we have been doing well.  I have been doing probiotics via smoothies using greek yogurt but we don’t have keifer, raw sauerkraut,  kombucha or coconut keifer at this time will be getting some things together so we can make our own but we don’t have any left.

So for the past week we have been doing the following:

  • MRM Attention Gels – up to twice a day during school week up to three times during weekends
  • Min Chex – up to twice a day during school week up to three times a day during weekends 30 minutes before each meal
  • NADH – on Monday, Wednesday and Friday 30 minutes prior to eating
  • Divine Child Drink -1 Tablespoon every day (baby gets 1/4 tsp.)
  • Activated Charcoal – 1 capsule 1-2 times per day
  • Methyl B-12 – 1 tablet per day
  • Vitamin D3 – 3,000 i.u. per day
  • Chelated Molybdenum – 1 tablet per day
  • Niacinamide – 1 tablet per day
  • Serrapeptase – 2 capsules per day during the weekends only (Friday – Sunday)
  • Acetyl L Carnitine – 1 capsule per day
  • Castor Oil Wrap – we did one today and will do another tomorrow since they are out of school
  • Zeolite- 1 tablespoon each night
  • Epsom Salt bath – Marcus had one on Wednesday with 2 cups of Epsom Salt and both kids had one today with 1 cup of Epsom Salt after their Castor Oil Wrap
  • Clay Bath – I gave Clay Baths last Saturday they will receive one tomorrow
  • Melatonion – 1 1mg tablet 30 minutes prior to bedtime
  • For Marcus only – Vimpat 12 mL 2x per day

So some of the gains we have seen this week:

Jai Lynn:

  • Decreased emotional outbursts
  • Increased understanding of what is being told to her
  • It seems as if her memory has gotten better

This week I will begin to track her academic and social progress.  Going to try and get her involved in some youth activities at church and try to find out more on the girls in her class. Will be adjusting the working binder tomorrow (now that I have ink in my printer) with checklists so I can graph out how she’s progressing.

Marcus, Jr.:

  • He is responding appropriately to questions asked of him
  • He seems to have a greater understanding if what is going on

Although, getting him to sit through a meal is still a challenge he will still sit.  On Saturday dad asked him where my computer mouse was, Marcus, Jr said, “Right there” and reached behind some paper and handed it to me.  I then told him thank you and he said you’re welcome.  In church today they had an assignment where they had to write who or what they where thankful for and here is Marcus, Jr’s reply, the teacher said he did it himself! It has been two weeks and 4 days since his last seizure, I think this is the longest time, he has a neurology appointment this week so we have to get some test results and see what our next course of action is.  He has been a bit more edgy at times it seems only when he is trying to communicate something otherwise he has been very happy as usual.

 

This week we will be tracking his attention, focus, hyper activity, academic progress, and social skills.

Mason:

This has been a tantrum week this week as everything no causes him to fall on the floor and cry.  We have been reading with him this week and he follows along with his finger and tries to repeat the words you say as you read.  He has been trying to have conversation (at least in his mind) and we are still working on not eating pens, markers or drawing on walls.  We started potty training (kind of) on Friday, he was happy to be in underware but continued to squat.  Because I haven’t potty trained anyone in a while I will need to read up on it 🙂

Coming up in the next month or so we will be trying some new supplements that I have discovered at a Wellness Retreat held by the church we attend. There will be a blog on all of the great resources from that retreat tomorrow.

Love and Blessings

Charmaine

 

Seizures Make Me Sick

My oldest son (9 years old today) Marcus Jr just spent a whopping 3 days in the Henry Ford Epilepsy Monitoring Unit being observed to perhaps see why he even has seizures, and for three days…nothing. So fast forward to this week, for the past couple of days Marcus Jr has looked a bit under the weather. Now, I’m not sure if it is the Divine Child drink that we’ve started back on (I’ll come back to that in a moment) or if it is something else. But, it seems that whenever is body is dealing with something internally, the reaction always seems to be a seizure. This weekend he had two, he had one at a friends house and he had another at church. Well I am just baffled because we had been without a seizure since right after Thanksgiving and his last hospital visit courtesy of G6PD.

At this point I am sick and tired of seizures and I wish they would just go away and leave my baby alone.

We have had a meniguire of tests: EEG’s, CAT Scans, test to see if he was allergic to any foods, gluten, fruits and vegetables, nothing. Nothing has become of all of these tests, thank God teachers and others have seen him have these episodes or his neurologist might peg me as a crazy mom.

I just want my baby to be healthy, I don’t want to have worry about if he’s OK, if he will fall and hurt himself, if a seizure will kill him. I try my best to let him live, let him experience all that life has to offer but man is it hard.

I pray that this is a phase and that he will grow out of it. I try to reduce stressors, always keep his surroundings, positive and upbeat and make sure he gets plenty to eat and plenty of rest.  I make sure he gets his seizure meds and makes sure his body is supplemented with what it is lacking.

Marcus, Jr’s seizures started off very mild, they would be periods of staring, face losing color quick 30-45 seconds very quick. Then they morphed into these super seizures of sorts, where 4-6 times a day he would have these episodes of stopping, staring, some tremours, drooling, losing color, rapid heart beat, trouble swallowing.  During all of those episodes he was always responsive but something has changed, not sure what it is but the last few seizures he has not be responsive, he has not popped out of them as quickly as in the past.  So back to square one and journaling his every bite, every supplement and every activity.

I wish I had a crystal ball to tell me what to do, I wish God would just pick me up and lead me in the right direction to make my baby better. I hate that kids have to get ill and that we as parents have to watch. I used to think that it was some sort of cruel joke being played on me by the universe but I now see it as an opportunity for me teach myself and others patience, kindness and love. My son’s ailments are not a curse, they are lessons.

I pray for a cure for epilepsy for all. I pray for a cure for my son, I don’t care about my epilepsy as I have learned to deal with it and it is controlled by medication. But, for him I want a cure for the autism and epilepsy they are issues that a 9 year old just shouldnt have to deal with.

So for now I document and pray that something will give and that his recovery is coming soon.

If your child is dealing with epilepsy what type of seizures, what medications and or natural treatments and how do you help your child cope?

Love and Blessings

Charmaine