Thursday, January 31, 2008

Get the lingo...

Matthew has been GFCF (Gluten free, casein free) since October or November I think? He's been dairy free since April of 2006. We just finally removed the wheat late 2007. Anyways, I wanted to chart our journey so when I lose the rest of my mind, I can recall the details.

Going CF (casein - or dairy - free) - whoa that sucked. The first week was heaven, next 3 were hell. He had major withdrawls, detox, yeast die off, whatever. He was a screaming, raging lunatic of a 2 year old. He was like Damian Omen III. It was BAD. It was hard at first, so many things have hidden dairy. McDonald's fries, coating on chicken nuggets, lunch meat and hot dogs....great, there go all the staples of a toddler's diet. There are subs, but they require you mortgage your home because they cost a lot more than the cheapo stuff.

Going wheat free was easier in ingredients but harder because my son loves wheat. Well, that is also a sign of an intolerance. That what we crave we usually are intolerant of, like a drug addiction. Actually the neurochemical reactions are the same. Children with Autism with dietary intolerances do produce morphine like responses to certain foods. So, the withdrawl can be a bear.

With removal of dairy and wheat we saw a reduction, not extinction of certain behaviors. We would see what we considered "dairy" behaviors like night wakings, up for hours in the middle of the night with screaming and then giggling, meltdowns over everything, lots of stimming, etc. The we sat in on a webinar with Dr. Kurt Woeller, he blew us away when he said those are all classic signs of yeast overgrowth. Removal of the dairy and wheat reduced the yeast I bet that is why we saw a reduction but not extinction of those behaviors. We would be baffled sometimes, wondering how he got dairy when in reality it could have been a yeast feeding food that prompted the response. to research yeast.....

Once I read about yeast I was so ready to go. Then I found data to suggest herpes strains of viruses have been known to cause autistic like behaviors in kids. Well Matthew had chicken pox at 6 months AND 3 years, I had it twice, lots of viral issues on Eric's to do more research.

So we started supplements. We did OLE (olive leaf extract) and Lysine for viruses. The dead viruses can actually become food for yeast so you always have to treat for yeast when you treat for viral issues. We started probiotics and GSE (grapefruit seed extract) for yeast. We've always used GSE but not in as strong a dose until now. Then we saw a huge healing crisis the next day. He was vomiting the whole day. His body was deluged with yeast die off and there are only so many ways the body can rid itself of toxins. I was miserable watching him. Here I had brought him into this world and for reasons I cannot explain, he has so many uphill battles ahead of him. I had fed him all the food unknowingly that had created yeast in his body, I was the one administering these remedies, I cannot explain just how bad I felt for my little boy.

But from then on, HUGE progress daily. We added in Candidase and Virastop, 2 enzymes. The Virastop helped with yeast die off which was a blessing. Yeast die off (in addition to making him ill) made him mean, aggressive, majorly OCD and stimmy. It was a relief when that went away. We've tweeked the dose and supplement so as of today here's what it looks like.

Morning, first thing on empty stomach - 2 candidase, 1 virastop, 1 drop GSE
Right after school on an empty stomach - 2 candidase, 1 virastop, 1 drop GSE
With lunch - 1 Peptizyde (enzyme that works on food, can actually be a sub for the GFCF diet or used when there is an infraction, hoping it will help with our upcoming trip to SD and Disney so he can actually eat some foods that have been off limits for so long....)
Before dinner on an empty stomach - 2 candidase, 1 virastop, 1 drop GSE
With dinner - 1 Peptizyde
Bedtime - probiotic

It is tough to time everything in between therapy and school and such but it is making a tremendous difference.

Integration is a wonderful thing!

Week 1 into Matthew being integrated in the Amancer preschool program. So, flash back a year and a half.

August 2006
Matthew meet Amancer preschool program, Amancer preschool program meet Matthew. 15 children, 4 "typically developing peers" and the rest with some form of delay (many with simple speech articulation issues), 1 teacher, 1 aide.

(School Officials) He'll do fine Mr. and Mrs. Hirning
(Mr. & Mrs. Hirning) Are you sure?? His sensory needs can make him very overwhelmed, this is a big classroom. You know, you have a lot of "stuff" out, he may make a lot of messes......
(School Officials) Mr. & Mrs. Hirning, he'll do fine.

3 months later.......
(School Officials) Ah, Mr. & Mrs. Hirning, this may not be the right environment for your son. He dumps all the toys, screams when overwhelmed, we just don't have the manpower to assign him a one on one aide for this classroom. We'd like to have him evaluated for Autism.
(Mr. & Mrs. Hirning) We told you.......

2 months later.......
(New teacher) Welcome to the SPICE program, this is a self contained class for children who have more severe disabilities. There are no florescent lights, we use visual schedules, there is a sensory area for sensory input daily and as needed, and we use PECS for requesting snack.
(Mr. & Mrs. Hirning) PECS???? We don't want him using PECS, he has some words, we want to encourage his verbal ability.
(New teacher) Don't worry, he'll do fine

And he did. His language exploded, probably because they used PECS with him. He got right into the routine and really made progress. The only thing was.....he was one of the highest functioning kids in the class. Which of course part of me was saying "yeah" and another part was saying "who will he learn from???". But, we finished out the year.

Summer was a bust, they put the dregs on the summer program, let me tell you. I had "issues" with an aide questioning me about why I wouldn't put him on the bus after it broke down with him on it and he freaked (picture 110 degree day, bus overheats, have to turn off the A/C, he knows his route and sees he is NOT home and the bus is super loud which is magnified by his superhuman hearing, can you say recipe for meltdown?). He developed severe anxiety towards the bus and frankly it was not worth it. Maybe when you staff the summer program, you should get aides that know something about Autism and have worked with children with Autism before. Yes, I am still honked at being questioned about this issue. I may not know a lot in life but I know my children. Don't you dare blow off an issue and say "he'll get over it" when you see my child 2 hours a day and I have him the rest of the time. 2 hours of a screaming meltdown is NOT OK to deal with because of the bus. Autism is usually comorbid with OCD and anxiety issues. Anyways......deep breath....

August 2007
So, here we are for another year. We get moved to a closer school (hooray since bussing is still out, see above) and from what I hear this is the best school in the district for the Autism program. Anyways, all is well, jumps right back in. Thanksgiving comes and the teacher says she wants to integrate him into the Amancer class. They pick a time and send him down. He gets sensory overload and meltsdown, then becomes very anxious of the class, the teacher, etc. So, we begin doing social stories about the class, etc. We back off and realize that he does still have 1 more year of preschool because he misses the cut off. Out of the blue last week he decides he wants to do to the integrated class. Hallelujah!! I celebrated the crap out of that. I guess he stayed for 10 minutes and then said "peace out". But hey, 10 minutes is 10 minutes. It all started when the day before we walked to the parking lot with another child in the integrated class. Her mom picks up each day too (they live across the street from the school so they just walk over). She has a little one a little older than Emma so we chat and the little ones kind of play together from their strollers. Anyways, we got the older kids and walked a bit together. Matthew was peeking in the windows of her class. I said "Hey, that's Mrs. Page's class, I bet they have COOL toys in there, and Rachel is in that class!! Maybe one day you can visit and play together". Well the next day is the day he does!! So, I get the scoop, stayed 10 minutes but wouldn't sit for circle time. So in the car we go through the spiel.

(me) Mommy had to sit for circle time, so did daddy.
(him) And Torrey had to sit for circle time
(me) Yes, Torrey did too
(him) **rattles of all the kids in Mrs. Page's class** have to sit for circle time
(me) Yes Matthew and I want you to sit too!

So, from that moment, whamo, he's been in the integrated class. It stunned me the first time he came out with the class to go home. My jaw was on the ground. I was so incredibly proud of him, I thought I would burst. Meanwhile Emma is screaming "HEY BROTHER" from her stroller, he has his own cheering squad.

So, in the past week, no more daily notes from his other teacher as is customary with the self contained class, we got the newsletter from the Amancer preschool class, even the scoop on Valentines. WE'RE BACK BABY ~ This time better than ever!!! Watch out integration, here we come!!!

Welcome to my world

OK - so I have tried to keep in touch with folks and keep everyone posted on the Hirning happenings. Not only am I falling dreadfully behind but it is creating anxiety that I am not able to let people know what's going on and yes, I indeed think of my friends and family often. Even if it seems like I fell off the face of the earth. So, this blog is intended to serve several purposes:

1) Update friends and family on our life
2) Document the milestones in the kids lives
3) Vent about issues that I need to vent on
4) Keep track of the crazy journey that is our biomedical forray into Autism treatments
5) Keep me sane by giving me a viable outlet for my stifled creative writing skills

So, here we go, I will attempt to keep this updated so check back often!

Tuesday, January 1, 2008

Instructions for Making a Weight Blanket

Instructions for Making a Weight Blanket

By Terri Hirning

A weighted blanket is used for your child (or yourself) and is meant to cover their body, not as a "spread" for the bed. So the first thing is to determine what size your child will need. My son is almost 4 and uses a "crib size" blanket and still has plenty of room for growth. Crib size is 36" x 52". I tend to use snuggle flannel on one side and cotton on the other, fleece can be very hard to work with, especially if you are doing a large blanket and can be very hot. I made a twin size one out of fleece and it was a challenge! Anyways, start with your sizing and then next is figuring the weight.

Standard weight is 10% of the child's body weight plus one additional pound. So, if your child weighs 30 pounds, the blanket would weigh 4 pounds (10% of 30 = 3 + 1 pound = 4). I only use Poly Pellets, as stated by the manufacturer they are hypo-allergenic and non-toxic. I find them at Michael's or Joann's, local fabric and craft stores in my area. As a tip, Joann's usually has them cheaper as an everyday price than Michael's does, but that could be a regional thing. They run about $4.99 - $6.99 for a 2 pound bag. I know others have used things like pennies, sand or beans but if you plan to wash this (which with kids it HAS to be washable) then poly pellets will be what you want. Other things have a tendency to rust, break down,disintegrate or become moldy.

Once you have your fabric, pellets and thread you are ready!! Lay the two pieces with the design side in, facing each other. The outside should be the back side of the fabric and the design should be face to face on the inside. Sew up 3 sides. I would suggest sewing up the two long sides and one of the shorter sides, leaving one short side open. Once you have those 3 sides sewn, turn it right side out through the open side. You will have basically a pillow case, lol.

Then, you will start sewing "channels" up the blanket. I usually start in the center of the blanket, at the bottom where it is sewn and sew a straight line all the way up to the open end. That basically divides the blanket in half. Then I go to one side and do the exact same thing, sewing channels up the middle of each section. I usually have channels that are about 4 inches wide. Once you get them that size you can stop sewing more. For a crib size blanket I usually end up with 8 long channels.

Once you have your channels sewn, you figure out where the cross lines will go. You need to lay your blanket out and get your pins ready. My pockets are usually 3" x 3" or 4" x 4" so it is small enough to provide even weight distribution, but yet big enough for you to manage to sew - you'll understand that more as you make a blanket. So, since you hopefully sewed the channels on the long side, you will be sewing more cross channels because you are working down the length of the blanket. I lay the blanket out with the channels I've sewn laying horizontally, so going from left to right in front of me. Then I take my measuring tape and start measuring out, you can do simple division to determine whether you are using 3" or 4"depending on the total length of your blanket. Then you just pin every 3 or 4 inches to mark where you will sew. For a crib size blanket that usually comes to 13.

Now you are ready to fill! To keep the weight even, I use a measuring cup scoop (normally the 1/4 cup one) and depending on how many bags of pellets that's how I figured out how many scoops per pocket. I usually get a bowl and count out the scoops per bag. Then I figure out how many channels I have based on the number of long channels already sewn and the number of pins I placed. That will give you the total number of pockets you will have and then you can figure out how many scoops to put in each channel. So, once you get that figured out, you start putting the scoops of pellets into each channel. Then you try and shake them all the way down and then sew across at your pin mark to make your first row of pockets. This is why it is good to be working with the long side hanging down. The pellets are very hard and did break my needles when I sewed over them on accident. I frequently have to lay the blanket out with the material ready in the sewing machine and manually push the pellets back down into their pocket so I can sew across without running one over. Sew across the channel to trap them in the pocket. Then you take the blanket out of the sewing machine and add another round of pellets in the channels. You just keep doing that until you get to the end. I just fold the ends in and sew across and viola - a weighted blanket.