update

I'm writing mostly to sound off but to also ask for any tips or tricks... My daughter is 11 and this year because we moved out of state (for a few years) we decided to home school her because of the big changes and hopefully get her stabilized.  There were a few reasons for this- the primary one being that the 5th grade is at the middle school and I just couldn't fathom sending her to a school where she would have seven different subjects and a different teacher for each one.

The thing is, now that she has been home, she is a different kid.  Her neuropsych said she qualified for an ASD diagnosis in 2011 and I agreed.  She was in her own little world, very egocentric, and very little interest and interaction with family members unless she wanted something from the interaction (toy, cookie...).  In the past few months, she has started to take the initiative to do a task just because it needs to be done.  For example, the baby was fussing in his high chair so she picked up his bowl and spoon fed him.  When he crawls on the table, rather than just ignore, she goes to him and gets him down.  She also has begun to play with him.

I realize that these changes could be due to maturation.. but a small part of me wonders if its because she doesn't have the constant academic stress of social stuff within a group of typical peers and she is not stressed due to constant confusion over the academic load... do you have any thoughts or opinions on that?

On another note, my four year old is still lagging behind.  I can't put my finger on it, but he is not 'growing out' of his issues.  He is struggling with toileting and is mischievous to the point that its becoming a serious problem.  We are in a constant state of mess due to his shenanigans... dumping out cheese powder and noodles from a box of mac and cheese was the latest thing he did early this morning.  I think I need to find a good OT who can sort out his issues and give me a program to follow to give this child the stimulation he needs to that he is not 'acting out'.  I suspect he has low registration and needs proprioceptive input to his upper extremities... but now I am thinking I need to add 'praxis problems' to his list of things.  Sorry for all the jargon.. its what a coworker (OT) told me about him...

Good Pediatricians in the SLC area?

I have a friend who is working with a family in SLC.  This family has a child who is not diagnosed but has some major medical issues.  The child seems like they possibly are on the autism spectrum, low tone, and non verbal.  They are in desperate need of a really good pediatrician.  I completely adore my son's pediatrician but when they called they found out that our doctor will not be taking any new patients in the foreseeable future.  This family needs a doctor that can really lead them.  The family is not experienced with this sort of thing and they do not know how to find their rights and answers to their child's problems.  Let's help them out!

School trouble

My son is 6 years old.  He is in first grade and goes to a life skills classroom.  We loved his teacher from last year.  I felt that he was really learning and growing.  She was supposed to be his teacher again this year but during the summer she left the school so he has a new teacher.  I have been feeling uncomfortable with this teacher.  I chose to put my child in the life skills class because all of the other public school options said that he would have to learn at the speed of a regular classroom.  He is unable to keep up with the typically developing kids his age when it comes to learning.  The life skills classroom is supposed to teach him at his speed.  However, with this teacher, I feel that he is being taught at a much lower level.  I am under no illusions, my son is intellectually disabled, but I still want him to be pushed to learn as much as possible and be as educated as he can be.  To be fair, I am in school as well and I haven't been able to stay for a whole day or anything to see what exactly they do.  The teacher sends me notes saying what they did that day and although there are times that she mentions one or two academic areas, most of it is popcorn parties, PE, recess, etc.  I have been there for the last hour of class (once), last half hour of class (multiple times) and I have not seen them do anything but watch an "educational" video in that last hour.  This worries me to no end.  I have been trying to figure out what I am going to do.  I don't know who to talk to, what my options are, nothing!  So while I was trying to figure out my next step another problem has arisen.  My son has had 3 accidents (wet his pants) while at school this week.  This is REALLY abnormal and we haven't had any trouble at home.  When I have asked him about it, he says he is embarrassed, frustrated, and mad.  When I ask why he didn't go he says he was scared.  If I press he says he isn't afraid of the bathroom, anything in the bathroom, or anything on the way to the bathroom, he says he is afraid of asking to go to the bathroom.  This has never been a problem in the past.  By this point, I spoke to the interning principal.  He said he and the actual principal have been spending every day, almost all day, in her classroom this past week to "support the teacher and help her get started".  Something that felt wrong and threw up red flags for me because it is a month into school.  Shouldn't they have done that in the first week or two?  Have other parents complained?  Throughout the weekend, as I have pressed further, my son started crying and saying "bo" (sound of a gunshot, and his name for his Kindergarten teacher, Mrs Gunn).  I have asked him if he wants to get another teacher but he pretty much says if he can't have Mrs. Gunn, he doesn't want anyone.  I don't know what to do, who to talk to, and what my options are.  I am sure that this teacher is a perfectly nice teacher, but I do not feel she is right for my son.  He needs someone he connects with better and someone who will push him to learn.

Proloquo2go

My son has been using Proloquo2Go for quite a few months.  I hate all of the voices.  They are too old! He is only 6.  All of the American voices sound so robotic.  And when you raise the pitch of the voice to get it to sound more "child like" it gets worse.  I want my son to have a more normal child like voice for this app.  There is the option to download more voices but when I go to that it only gives me one more FEMALE American voice.  All the rest are British or Indian.  Has anyone found another way to download a new voice?  I just want a male child voice with an American accent who does not sound completely robotic.  Is that too much to ask?

Kangen Water

Hi,
Our last post was about a GAPS diet we were trying. It worked pretty well for two weeks but we got hit hard with RSV season and went into survival mode.  We decided to put the diet on hold as it was to much to manage. I still want to do it but it might be something we try next year. 

But I did want to write about something cool that we have discovered and it has definitely improved our lives.  We came across Kangen water. 

"Kangen Water® is healthy drinking water rich in minerals, purged of impurities, and ionized through electrolysis. Alkaline ionized Kangen Water® is an excellent choice for healthy hydration. Not only does it taste great and refreshing, but it also helps you avoid impurities AND save money!" copied from www.drinkfancy.com.

So I went to a demonstration and my boys started drinking the water.  They just gulped it down like it was nothing.  That night, they slept through the night.  The next night, they slept through the night.  Since then, they have probably slept throught the night about 90% of the time.  Our 2 year old Max, he use to wake up and want milk about 3-5 times in the night.  Now, he may wake up once and ask for milk but we don't give it to him.  Max was just barely diagnosed with aspergers. 

Cohen who is 4 and diagnosed with autism, he's done pretty well at sleeping but this definitely helped.  One of the videos that I watched talked about how drinking plenty of water will help the brain produce melatonin and that you should be drinking half your body weight in ounces.  I try to drink about 100 ounces a day. 

Anyways, I thought I would pass this info on.  The person who gives this water away, yes gives it away, is really nice and has not pressured us one bit into buying a machine.  She is located in North Salt Lake.  Check out her site www.drinkfancy.com.  I've posted more about this on our site www.lifeandhopewithautism.com

Jake

New diet - Book - New adventure

Hi, its been a while since we last posted. Life is crazy busy and never lets up. We came across a book called Gut and Psychology Syndrome (GAPS). It is written by a doctor in England who cured her son from Autism through a diet. After listening to a podcast of an interview of her it all made so much sense. Basically she talked about changing the diet to all non-processed foods, organic fruit and vegetables and natural meat. The first stage is mainly broth from meat and vegetables, and then adding in food as the body is ready for it.

So we started this diet about two weeks ago and it has been very rough and expensive. But we have seen a lot of improvement in our 4 year-old autistic son. It has been the simple things that we have noticed like jumping with both feet, picking up a book and reading it, trying to talk more, more independent, and better coordination. So it has been really cool to watch.

The diet at first was very hard and we are not living it to the letter of the law with him but he is eating about 90% of what we give him. Which before that it was hot dogs, cheese tacos, Doritos, and other junk food.

The first few days we basically had to starve the kids until they would eat what we had made. We decided that we had to be a little more flexible with our two year old, mainly because he is so stubborn and we only have so much energy.

The basis of the diet is to heal the gut. You are suppose to do the diet for two years and then you should be able to digest food properly. I encourage you to check into it. We have a bunch of links on our site.

We also published a book on Amazon. It is by my 6 year old daughter. Its called "My Autistic Brothers." Its available on both Amazon and Kindle. You can find it on our site. www.lifewithpdd-nos.com

I must give a big shout out to my wife. She is amazing!! I'm sure most of you reading this are women and I have to give props to you all because I know the from my wife's experiences being a mother of an autistic child or one with any other disability is tough. You all deserve a million dollars, per year.

Dad's Point of View

I just wanted to let anyone and everyone know that my husband decided to start a blog about raising special needs kids from a Dad's point of view.

I hope he can connect with other dad's, so he will feel like someone out there understands. But it's good for anyone to read. It's always nice to be reminded what a Dad's point of view is. Pass this along to any special needs families' you know... or just anyone who might be interested!

www.scmc0310.blogspot.com

Enjoy!!