Wednesday, 31 October 2012

Happy Halloween

As with almost everything in our lives, I look at Halloween this year, take a deep breath and think- so. much. better.  Than ever, but especially better than last year.  This time last year I'll be honest, John and I weren't speaking.  Nate was going downhill pretty rapidly and spent most of Halloween screaming.  At one point that day a relative turned to me and asked if he was EVER happy.  That stung.  But it was true- he was so clearly distressed and we just didn't know yet how to help him.  Like I said- this year- so much better.
What did we do differently?  Well, for one, my expectations were completely different.  One of my favorite quotes, which has taken on a whole new meaning these days is "Nothing breeds gratitude like lowered expectations."  Except I would reword it slightly and say altered expectations.  Not necessarily lower.  I just took the attitude that anything we were able to do with Nate would have to be enough.  Our children our very very loved and had all of their grandparents appear to go trick or treating this evening along with one of mommy's best friends and her family.  So there were plenty of hands- if I had to take Nate home, Jack would definitely not miss out.  Other adjustments- I didn't get what one would consider a "real" costume for him- I found an owl winter hat and cape on and he wore that.  He can wear the hat all winter so that's a plus.  Also, it wasn't uncomfortable, didn't feel cumbersome or odd to him.  This worked out well, and he wore the costume all evening without complaint.  I also took him in the stroller, he feels more secure in it than in the wagon we used to take.  And I brought him chex cereal, his current favorite to munch on.  He made it the WHOLE way with the bigger kids.  We didn't take him to more than maybe two doors- He doesn't like the constant transitioning, so he hung back with the grown ups for the most part.  My goal was for him to be out with us, able to observe what he wanted to, and feel protected and secure.  And I think we made that happen. 
Jack is a whole other ball of wax. He wanted to be Wall-E, for the second year in a row.  We had the premade Wall-E costume last year and had superglued the goggles back together at least twice before he ever went out to trick or treat.  So I decided to upgrade the costume a bit- I made new goggles and I made him "treads" which were basically corrugated laptop packing material spray painted silver and tied on with elastic string- Jack LOVED it!!! He is sleeping with the whole get-up on his bedside table tonight.  He had his issues during the whole experience- he had major anxiety and had the occasional slip of the bad word or freak out.  He did better as time went on and by the end of the evening was doing very well.  He has a "script" that he used every time someone answered their door- do you know who I am, do you like my wall-e goggles, his eyes look a little sad huh?  He tries so hard, my little love.

The best part of the evening was being surrounded by family and friends.  Both grandmoms came trick or treating, and my friend Helen, her husband and her daughter Lila came with us as well.  It was lots of fun!  

Another victory for our family!  Happy Halloween everyone!

Tuesday, 30 October 2012

Blessed, Blessed, Blessed

All right, let me give you the magic formula for FINALLY not being the ones with a prolonged power outage after a storm.  First, fill up your generator, then go fill up the gas can again so you have extra fuel.  Then, clean out the garage so that you can park both of your cars in it for the first time in over two years.  Then clean out the gutters and rake the yard- put all the outdoor toys away properly and bungee the trash cans to the fence.  Inside, wash every single piece of clothing in the house, run the dishwasher frequently so that all dishes are clean, cook a roast in the slow cooker so you have decent food, grocery shop, get all the necessary supplies.  Refill every possible flashlight with fresh batteries and gather about 30 candles.  Then, during the storm, get the generator into position with all extension cords at the ready.  Finally, have the kids' clothing for several days laid out, extra blankets on the beds, and a candle lit so that WHEN the power goes out it won't be pitch black in the house.  If you do all of this, apparently you will wake up in the morning, turn on your lamp, and go about your business.  If only we had known this before.

We are so so lucky that we didn't lose power during Sandy.  My heart just aches knowing what so many friends in New Jersey and New York must be going through.  New Jersey is my home and seeing pictures of the shore the past few days has made me feel sick to my stomach.  My prayers go out to all those affected.

Jack was "prepped" for the storm as well- I have had a special flashlight for him to carry on Halloween night and he had it with him all evening and night yesterday.  When he talked to grammy about the storm on Saturday he matter of factly mentioned that we wouldn't have power.  All day yesterday he kept telling John, "just start the generator daddy".  He knows the drill.  Nathan was thrilled with the wind- he is fascinated by trees, sticks and leaves in the first place- watching them blow all around was a treat for him, even if mommy was feeling just a bit more anxiety than fascination.  One downside- the boys slept until about 1am last night and then were up- the wind was too noisy I think.  Props to daddy for watching the boys during my work day the past two days- one of the "benefits" of telecommuting- it can be completely perilous outside, all forms of business and government can be closed, yet lucky me, I can still work. In fact, if my power goes out, I have to take vacation time.  No bitterness there. 

As shallow as it is, I am still hoping for trick or treat tomorrow night.  Jack asked to be Wall-E again this year, and because I was bored with that in general, I have been working very hard to "jazz up" his previous commercially produced costume.  I am excited to see him all dressed up.  In contrast, I will be lucky if I get a costume on Natey for 5 minutes- he hates that stuff.  I wisely bought a costume that involved nothing more than a hat and a cape- we'll see how that goes. 

I am feeling very blessed to be sitting in a warm, bright house tonight.  I hope that everyone has their power restored quickly- if not, come on over- we have LOTS of food.  Yes, I was one of those crazy people who was getting ready for the apocalypse.  In my defense, I just finished reading the book "The Things That Keep Us Here".  It was amazing, but if you have a tendency to catastrophize, I wouldn't recommend it :)

It's a page turner, but also a major anxiety provoker.  Stay safe everyone.

Saturday, 27 October 2012

Information Overload

Wow.  Today was intense.  No, Frankenstorm has not yet reached us, although intense preparations are in progress- generator is gassed, in the wagon, and aimed at the exit of our garage, extension cords are detangled, we have purchased water, beer, wine, beer, wine, D batteries.  We are ready.

However that is not what this post is about.  I had an amazing opportunity today (as did our entire local TACA chapter) to hear the illustrious Dr. Anju Usman speak.  She is a prominent DAN! doctor who is based in Illinois.  It was amusing really, they turned the lights down at the beginning of the lecture, then changed their minds, worried people might doze, and turned them back up.  This was information for my children- my ears were glued wide open- the only way I was dozing off was if I received a blow to my head.

The main topic of the lecture was the gut-brain connection in autism and various treatment modalities.  All of this is controversial.  The medical community at large has not accepted these practices as of yet, mainstream medicine still considers autism to be a behavior/mental disorder.  Here is the basic definition in Stedman's Medical Dictionary (one of the first texts you are handed in nursing school- or at least in the "old days", haha)

  1. A mental disorder characterized by severely abnormal development of social interaction and of verbal and nonverbal communication skills. Affected people may adhere to inflexible, nonfunctional rituals or routines. They may become upset with even trivial changes in their environment. They often have a limited range of interests but may become preoccupied with a narrow range of subjects or activities. They appear unable to understand others' feelings and often have poor eye contact with others. Unpredictable mood swings may occur. Many demonstrate stereotypical motor mannerisms such as hand or finger flapping, body rocking, or dipping. The disorder is probably caused by organically based central nervous system dysfunction, especially in the ability to process social or emotional information or language. Cf.: Asperger disorder
There is of course no mention of genetics, actual medical causes, and certainly nothing about the GI tract in this definition.  In order to start learning about these aspects of autism (and note that I do not say theories, as I believe them to be fact), one has to do their own research, to connect with the right people, to stumble upon an amazing pediatrician like our family did.  Our first pediatrician labeled Jack manipulative and "difficult".  The first developmental pediatrician told me not to bother with any special diets, if I wanted to try anything, B vitamins would be a good idea.  So when we first went to see our current pediatrician and she started talking diets, supplements, blood, stool and urine tests, I was overwhelmed to say the least.  Last fall was a blur of trying to implement everything that was being thrown at me, and then trying to understand why!  And I was a biochemistry major!  Can't imagine how other parents with different backgrounds must feel when confronted with all of this.  I thought our pediatrician was so "radical", and for a general ped she is, but in reality she was just getting us started on the right path.  And I have known for awhile that there is much more that we need to do.  Today just drove that point home a little more.  Consider me once again overwhelmed and confused.  I am not confused about the actual interventions, not even their scientific basis. I don't know what to do first, I don't know what each of my kids needs.  And they are so stinking different.  We go to see our autism doctor in less than two weeks- I will be armed and dangerous when I walk in to his office. 

Dr. Usman went through all of the functions of the GI tract, which was in general a review for me. Then she went in to many of the issues that can cause impairment in the function of the GI tract- bacteria, yeast, "leaky gut" (basically not absorbing nutrients appropriately)- it's all very complex, and if I were on the outside of this situation looking in I would find it completely fascinating.  Instead I find it horrifying- when it's your kid, you're sitting on the edge of your seat, you want too throw yourself at this person's feet and scream fix them, please!  Of course I didn't do this- I was grateful just to hear her speak for 3 hours. 

I am going to try to curtail the amount of information I communicate, as I know I have a tendency to start throwing a million different things out there and making people feel like their heads are going to explode (lol). I will say that the things that she talked about in her lecture touched on almost all of my areas of concern for the boys.  The very first thing she talked about, before she began her own lecture, was the MTHFR gene and research being conducted on this and what they are now calling "cerebral folate deficiency".  This just confirmed that I will be asking the autism doctor for an Rx for methyl folate.  I think the boys need it and I think he will agree.

Other areas that I have new plans for:
Jack's attention- I want to try GABA for him- Lee Silsby, my favorite compounding pharmacy has a cream- how much more convenient can you get when your kid can't swallow pills yet? 
Their guts- I want them retested for yeast (this is at least $200 out of pocket for each of them, sigh).  In fact I don't think Jack was ever tested for yeast- and he had major dental issues last year. This is a sign of many nutritional issues including gluten intolerance, but it can also be a sign of yeast.  He has many of the hallmark signs of yeast overgrowth- I am just so worried about Nate's speech all the time that I feel like I overlooked it.  They both likely need more probiotics and more cleansing diets- ie, fewer processed foods.  Nate may even need more antifungal medication to treat his preexisting yeast. 

There are many many other things that need to be investigated.  So many that I just can't even get into it here yet.  I need to sit down and do some major research.  In between preparing for the hurricane, reading for my More Than Words Class and developing new goal oriented behavioral play plans for Nathan that will be videotaped again soon, trying to keep up with the current interventions, cleaning, doing laundry and going to work.  Oh and cooking the special diets.  And Jack's OT gave me about 5 articles to read today, and "prescribed" several new interventions.  And even our marriage counselor handed us articles on autism and interventions this week- everyone is getting in on the action :).  I don't believe in cloning- except, right now, for me.  I need two of me.  (Ok Helen you can be cloned right now too, and Jo you too) I am glad that I feel overwhelmed by valuable information and the number of interventions that I want to try for the boys.  At least I am not lost, at least there is something I can do.  Man, I really need to make some lists!  

Sending some prayers to my two dear friends mentioned above.  You have both been so incredibly supportive of my family, and I will do anything I can to support either of yours.  Love to you both and wishes for a smooth next couple of days- you are always in my thoughts. 

Friday, 26 October 2012

Before #Autism Ruled- Mommy Planned Parties

My last few posts have been quite serious, so I thought I'd show you something really really happy.  My best friend sent me Nate's first birthday party pictures last night.  Yeah, that's what happens when you have little kids.  Anyway, I am so so thrilled to have them, as I never took any pictures that day.  This day is etched in my memory as "perfect"- my older sister and her kids were there, Nate was "healthy" and developing "normally" at the time.  It was just very very special.  So thank you Joann, for sending them....they have only made me cry a few times, shocking I know.  Oh, and don't hate me for including that, ummm, one picture.  I included the one of me with a triple chin too- Nate just looks too cute.  Enjoy!

cheese ball covered in cream chees and shaped like an igloo, with black olive "penguins"

Cake with gluten- for a mommy with no artistic talent,
 this took me about 6 hours, ha

party table

hot cocoa "bar"

favors were snowman kits for the kids

Natey and mommy (15 lbs ago- blah)

The photographer, who I am hoping won't kill me,
modeling the awesome shades for the kids

Taking Steps for Jack

I got a chance to really talk to Jack's teacher yesterday afternoon which was extremely helpful and encouraging.  I am very impressed by her take charge attitude and unwillingness to accept the party line.  Reminds me of someone else I know :).  She has been a teacher for many years, Jack's pre-K teacher from last year used to work with her at a different school.  I am starting to think that she may have facilitated his placement in her classroom.  Anyway, Jack came back in from recess and continued to cry and need the headphones.  He was convinced that the red light on the smoke detector in the classroom was really an indication that it was about to go off, no one was able to convince him otherwise.  I really hope we don't have a recurrence today, but he seems like he is in a pretty good place this morning, didn't wake up last night, etc. 

As much as I hate that Jack went through this, and frankly that his teacher went through this, it was probably a good thing for his long term services at school.  Jack is such a great kid that until you actually witness his extreme behaviors, it's difficult to believe they exist.  Well now they know (and knowing is half the battle- sorry GI Joe moment there).  I asked his teacher how the observation with the school psychologist went and she said it was useless, as Jack was fascinated by what they were doing at the time and sat still and paid attention.  Typical.  Then she said that she didn't want to get my hopes up, but she has contacted the school board resource person to come observe Jack in class.  She is apparently a person with the power to allocate more resources to Jack.  So once again, the teacher is being very proactive.  She did go on to explain to me that the issue is that Jack does not have behavioral problems. Trisha- you hit the nail on the head in your comment on facebook about my post yesterday.  He is not "dangerous", he is not disruptive to other students, other than interrupting during stories with comments, etc.  Unfortunately the resources always go to the child that could be a danger to himself or others first- and that's appropriate.  The problem is that with limited resources, where does that leave the kids that need help for developmental issues?  Screwed basically.  She suggested that if this person does not make the decision that more services are required, I need to call an "emergency" IEP meeting.  A parent has the right to do this at any time.  And I am prepared to do that at this point.  This brings me back to my second or third post ever, where I was questioning the need for an "advocate" in IEP meetings.  Eating. my. words.  I get it now.  It's not a matter of me not wanting to go to bat for Jack- I of course will be there every step of the way, but how aware am I of the resources that are even available?  How do I even know what to request?  There are some informal resources that I will probably consult first, but if it becomes necessary, I am also willing to take this step.  Sigh

The next call I made yesterday (yes it was a busy day) was to Jack's private OT.  I wanted to make her aware of the problems Jack is having, pick her brain, and see if she would be willing to work with Jack's school OT.  She was very willing to do that- I just have to sign a release at our next appointment.  She is even willing to go observe him in the classroom if it becomes necessary.  School OT's are not really in the classroom to deal with the sensory issues that Jack has.  They are there to deal with the fine motor issues that prevent him, and other children from completing their schoolwork.  So his private OT may be able to assist with some strategies to make the classroom a more suitable learning environment for Jack.  She is also putting together a list of potential interventions that we will go through at his appointment tomorrow.  On this journey, we have been blessed to connect with some really really amazing practitioners.  She, and Jack's teacher are definitely among them.

So I am feeling a little calmer, a little more "in control" than I was yesterday.  Plans are good.  Interventions are good.  Keep the positive thoughts coming- your support is invaluable to me.

Thursday, 25 October 2012

More Answers=More Questions

Ughh.  When it rains it pours on my happy little "I can handle autism bubble".  Grrrr....

I have been chasing one of the boys' doctors for weeks, trying to find out if he has the results of all of the labwork we did after our last visit.  I didn't necessarily need to have the results, just wanted to make sure he would have them in hand at the appointment we have the first week in November.  I have never worked with a doctor who comes to the phone when you call.  He sat looking through their charts himself.  So I still don't know if he has everything- I really wanted to know if he had the results from the hair samples I sent off.  He was still looking and was going to call me back later this afternoon- just like 2 weeks ago.  Frustration is mine.

Anyway, while he was looking for those, he happened to pull up some other tests that we did and said, oh I see that both of the boys carry one genetic mutation.  Casually like that.  Hey buddy, this is kind of big news for us, care to elaborate a bit more?  So then he told me that the mutation has to do with the way their bodies metabolize vitamin B12 and folic acid.  And then he said he would call me later.  And that was it.  Now mind you, I was already freaking out because of poor Jack's experience at school today, so I don't know that I was emotionally equipped to take this in right now.  Swear to God that I was having palpitations.  Genetic mutation?  That sounds scary.  Oh Google.....

I googled folic acid and genetic mutation.  Thinking maybe it's rare, maybe I won't find anything and I will just have to wait for our appointment.  That's NOT what happened

The mutation is called MTHFR (and I find that extremely appropriate)  Ready??

"MTHFR is a common genetic variant that causes a key enzyme in the body to function at lower than normal rate.  This can lead to a variety of medical problems, when people with MTHFR are exposed to more toxins than their bodies can handle."

"The worst combination is 677/1298 in which you are heterozygous to both anomalies.  Many chronic illnesses are linked to this anomaly.  98% of autistic children have an MTHFR anomaly.  Fibromyalgia, irritable bowel syndrome, migraines, are all conditions associated with MTHFR anomaly." 
"MTHFR can make you susceptible to illness because the pathway is the primary source of glutathione production in the body.  Glutathione is the body's primary antioxidant and detoxifier.  People with MTHFR anomalies usually have low glutathione, which makes them more susceptible to stress and less tolerant to toxins."  

Well smack my ass and call me Sally!!!!!  My husband has crohn's I have migraines.  My whole family has migraines.  Hmmmm....

Treatment consists of simple vitamin supplements --- FolaPro L-methyl tetrahydrofolate by Metagenics, OR, 5 tetrahydrofolate or methyl folate.
Longevity Plus, H.R. T. Plus with 5-tetrahydrofolate.
Life Extension, optimized folate (5-MTHF).
OR prescriptions like:
*Deplin/ 7.5 mg l-methylfolate 
*Metanx-L methyl folate calcium (as Metafolin) 3 mg, Pyridoxal 5` phosphate 35 mg, methylcobalamin 2 mg. 
Methyl B-12 injections
The vitamin supplementation is lifelong.

We have already taken some first steps down this road- which tells me that this must have been suspected (not exactly rocket science when 98% of people with autism have this mutation).  We have Nate on Methyl B-12 injections.  We have him on folinic acid.  This is folic acid that has already been partially broken down.  However, if he is not able to break it down from this point then it serves no purpose.  It is very likely that he will need methyl folate.  So that is my first question at our appointment in November.  Frankly, since this is Dr. sink spitter as all of my readers have come to fondly refer to him, I am tempted to call him between 7 and 8 am tomorrow, but I don't want to abuse his willingness to go above and beyond..  Hopefully he will call me back about the other labs and it won't be an issue.

So I feel like this should be being discussed a bit more in general?  Is that unreasonable?  98% of people with autism?

For instance:
Molecular Aspects of Thimerosal-induced Autism
The developmental disorder autism has both genetic and environmental origins, and its forty-fold increase during the past two decades reflects an increased role for environmental factors. It has been proposed that increased use of vaccines containing the ethylmercury derivative thimerasol is the major contributing factor. Published research from my laboratory has revealed that thimerosal is an exceptionally potent inhibitor of biochemical pathways that transfer single carbon atoms between molecules. These “ methylation ” pathways are critically involved in several important functions including the regulation of gene expression and the molecular mechanism of attention. Recent studies from my lab indicate that thimerosal exerts its toxic effect on methylation by interfering with formation of the active form of vitamin B12, also known as cobalamin. Dietary B12 must be converted to methylB12 (methylcobalamin) in order to assist in the transfer of single-carbon methyl groups from the folic acid pathway by the enzyme known as methionine synthase. By reducing methylB12 formation, thimerosal inhibits this enzyme and thereby interferes
with methylation events. Autistic children have abnormal plasma levels of methylationrelated metabolites and exhibit higher frequencies of genetic mutations that affect this pathway. These genetic risk factors make them less able to detoxify thimerosal and also increase their sensitivity to its mechanism of toxicity. In many cases, autism can be effectively treated by the administration of methylB12 along with other agents that augment methylation capacity. Taken together, these facts indicate that increased exposure to thimerosal has combined with genetic risk factors in a sensitive subpopulation to cause the recent rise in autism.”

Folic acid fortification started heavily in 1992.[2]
Autism began to quickly rise in 1993′s.
In the early 1990s, autism diagnoses began to soar. In the 10 years between 1993 and 2003, the number of American schoolchildren with autism diagnoses increased by over 800%. In 2006, the CDC noted a slight decrease in the number of new cases diagnosed.[3]

Autism began to rise at the same time folic acid fortification began.
Is the rise of autism due to an increased survival rate of babies with MTHFR defects?
Countless children with autism have at least one bad allele of MTHFR – and many have two. Amy Yasko has yet to see any child with autism without a bad MTHFR allele. If you have – please correct me. [Amy Yasko's book]
Are we doing the right thing in ‘optimizing pregnancies’ when in the end, we are actually creating weakened genetics and having babies born with various genetic mutations that cause them to have serious medical conditions later in life – or early on.
Folic acid supplementation while pregnant is old news.
Women need to supplement with L-5-MTHF and Folinic acid – not folic acid.

OK, I am throwing a lot of stuff at you.  Bottom line is this stuff makes scientific sense to me.  Consider my interest peaked and my research hat on.....more later

#Autism, Auditory Sensitivities, and the Classroom

I am in a bad way right now.  Yes, I know, complete 180 from yesterday- no I am not bipolar, I am just an autism parent.  Things change very quickly and thus so do my moods.  One mishap can trigger a nasty chain of events- which is what happened today. 

John took a really hot shower this morning- no problem there- however, our smoke detector is moronic and mistakes steam for smoke.  So our smoke detector went off. This has not happened at home in a LONG time.  In fact, if I'm being honest, we went for a significant period with the battery pulled.  Why?  For the same reason that I quickly learned how to put our microwave on silent mode.  Jack has had major auditory sensitivities since he was about 18 months old.  We actually just replaced that battery recently for this reason.  Any unexpected or loud sounds (even music) would cause a meltdown.  Things have gotten significantly better- we haven't had problems with music class this year, where last year Jack would try to run from the room.  So things have been looking up.  Even though he still talks about the fire drills at school from last year.

When the smoke detector went off this morning Jack lost it.  He came running to me screaming at me to make it stop, hands over ears, etc.  Not THAT unusual for a little kid right?  Let me put it in perspective for you.  We stopped the noise within a minute.  This was at about 8:10 this morning.  Jack did not remove his hands from his ears until he and I were walking to the bus at 8:40 this morning.  Once we were outside he seemed ok. This did not stop him from talking about it constantly to me and to everyone at the bus stop.  But he hopped on the bus and waved goodbye, seemed ok to me.

I got a call from his teacher at around 11:45.  Seems that Jack put his hands back over his ears the minute he stepped back indoors and would not remove them all morning.  He had immense anxiety about the school alarm going off and ended up crying for much of the morning. They were finally able to calm him by getting headphones from the media center and letting him wear them.  He was about to come back in from recess and the teacher was hoping the afternoon would be better. 

I just can't imagine what Jack must have been going through this morning.  I am an anxious person, I get having anxiety in general, but to be that afraid of a sound coming back when he only hears it maybe twice a year?  How must it have sounded to him, hurt him, to cause him to have such an extreme reaction?  Auditory sensitivity is NOT a made up term and Jack is living proof.  It makes me wonder just how much all of the little sounds in school are interfering with his concentration.  How loud they must seem to him.  Think about it- the teacher talking, the kids talking, chairs being scooted, the rustling of papers, the bathroom door opening and shutting, pencils and crayons hitting the floor, scissors cutting.  It must drive my poor boy crazy.  Just breaks my heart.  I have been working on many different things to try at school with Jack- he is always floundering in his chair when I work with him at home, and always has.  He falls from his chair quite often, he doesn't know where his body is in space.  So I ordered a little weighted lap pad for him- wondering if it might help him feel more "grounded"

I have also been planning on buying him a weighted grip for his pencil, so that it might feel more substantial in his hand.  Are sound cancelling headphones next?  And at what point does the school acknowledge that he needs an aid???  Because he DOES.  I am so worried about him, I don't want him to have a negative experience at school.  I am feeling a bit lost today.  Say a little prayer that his teachers and I can come up with a plan that works for him, because what we are doing right now?  It's not working.

Wednesday, 24 October 2012

Empowerment Through Acceptance

Accepting the limitations that autism brings is one of the hardest parts of dealing with the diagnosis.  That and wondering to what extent your child will be affected by them.  I remember that at about this time last year I was at a birthday party and a good friend of mine, who's daughter is slightly younger than Nate was there as well.  Her daughter was pointing to all of the animals on a board, naming them and making their sounds.  Honestly, I was so raw at that point that I wanted to curl up in a ball and die.  Nate was no longer saying mama.  This was probably one of the key moments that led to me isolating both myself and the boys from peers for awhile.  I couldn't handle having my kids around neurotypical kids.  Obviously my friends and their kids were doing absolutely nothing wrong- in fact they were incredibly supportive- it was the pure normalcy of it that I couldn't handle.  And it was such a different experience than the one I had the first time around.   Jack was a VERY early talker.  The other moms were amazed by him, I was proud, and at times I did have moments of smugness.  The joke was on me.  I have learned just how little my parenting had to do with Jack's speech development.  Not that reading to him didn't have a positive impact, but much of it was just how he was wired.  I never got why other parents were stressing so much about their child's lack of speech.  I figured, it'll come.  Oh man, that just makes me cringe now! 

I didn't think the pain of that would ever get any better.  I felt like I had lost too much, with both of the boys being affected by autism, to ever get to a place where I would be comfortable around our friends again.  Am I there now?  Not really.  But I have realized that I am on that path.  I am slowly able to "expose" (because that's how it feels) Nathan to more "normal" situations.  Was it him I was protecting in the past?  At the time I thought so.  Nope.  He most certainly didn't and doesn't notice other people's reactions to him.  It was for me.  Mommy couldn't handle it.  And you know what?  I think I had a right to that- I had to find my own way through this maze that is our life. But on Sunday, when I was at the farm with the boys and Nate was stimming, I could take a deep breath and accept that it was going to happen, that it was going to continue to happen, and it is ok.  Getting to this point opens up a whole new world to us.  Would I venture to take both boys to the mall by myself?  Ummm, no.  At least not by choice, or for "fun".  There are too many triggers, and they are different for each child- it's like a minefield.  But outdoor activities, small gatherings, playdates; I AM getting to a place where I can handle these as an autism parent.  I can hold my head high while watching my kids do his thing.  I can answer other parents' questions without becoming overtly defensive. 

I will NEVER fully accept my kids' limitations.  I will always be fighting to better their quality of life, to improve their functioning both at home and out in the world.  But I guess I now understand that there is a huge difference between acceptance and feeling defeated.  I can fight for them while appreciating who they are during the process.  Nathan is doing the most awesome thing this week.  Most parents would be absolutely thrilled by it themselves, when their baby is about one.  He has been saying mama again for awhile now, but this week it's like something clicked and he has realized it's my name, that I come when he says it, that it gives him some power.  I have never heard mama said this much...ever.  I love every single second of it.  If he is sitting in his booster eating lunch and he hears the click of my office door opening, he starts in right away, calling to me.  He sometimes comes to the office door when he gets home from school and just stands there saying it until I come out (it's not hard to convince me).  When I walk into his room in the morning to pick him up out of the crib he says my name.  This time last year, I was honestly afraid that I might never hear that word come out of his mouth again.  So now I can find my almost 3 year old saying "mama" completely fulfilling.  I look at the other kids in our social circle that are his age (there are I think 6 within 2 months of each other) and I can find their speech cute again.  I don't resent what I am missing with Nate- or not nearly as much.  My friend's little boy is about to turn 1- I am preparing myself mentally for his speech to surpass Nate's shortly.  It's not nearly as painful as I feared it would be.  As long as we are moving forward in some way, I am ok.  What a huge leap to make in a year!  In terms of empowerment- accepting where we are with Nate gives me the ability to fully reconnect with friends that have kids his age again, and as I mentioned above, it gives me the confidence to take him out with me more.  I can handle it emotionally when he has a sensory meltdown, or runs around with pine needles waving them in front of his face for an hour.  Our whole family has come a long way.  For instance, my mother in law took Jack to get a pumpkin at a farm a few weekends ago.  She brought a small pumpkin back for Nate, but she also brought an extra long weed that she found- perfect for Nate to wave till his little heart was content.  I almost cried, I was so touched.  She too is reaching that point.  My mom is constantly looking for opportunities to have therapeutic one-on-one time with him.  And daddy?  There just aren't words- he has become one of Nate's biggest cheerleaders.  All of the people who love Nate are getting there.  He must feel that right? 

Tuesday, 23 October 2012

Finding Peace After This Past Year

How?  Well, several ways...

First of all, I am sitting here blogging when my house is a complete disaster.  A year ago I could not have done this.  Everything needed to be tidy, everything needed to be in control.  Writing brings me so much peace that I would rather do this than deal with the chaos around me.  I could vacuum up the dog hair...again...and when I get up tomorrow morning it will look like I have done nothing.  I could put all the toys away, knowing that by 8am tomorrow they will be right back where they are now.  I am choosing not to.  I am choosing to take care of myself FIRST.

This is one of the biggest lessons I have learned- and I definitely learned it the hard way.  I mean, as I said a few weeks ago, when I went to the dentist they had to "reactivate" my account.  I hadn't been to my PCP unless I was ill in almost 5 years.  I am paying the price for this now- need extensive dental work.  I had a root canal today- how sick is it that it didn't really bother me?  Being able to lie still for 2 hours in the middle of the day?  Priceless.  I could have done without the fever last night and the pain right now, but other than that I'm good.  Thank God my physical health is good- well other than the migraines and lock jaw.  I am hoping that taking care of the dental issues might help the migraines.  Hoping.  I went so long just trying to make it day to day- getting the boys to their appointments, working, CLEANING.  I was waiting for there to "be time" to take care of myself.  I have come to the realization that this is never ever going to happen.  I have to make the time, no matter how difficult it is.  These things were always weighing on my mind- they sat on my "to do" list for a long time- taking the time to actually do them is way less stressful than worrying about it.

Another biggie for me?  I have really found a new perspective on day to day happenings.  I used to stress out so much about what people thought of me, how my children behaved, my relationships, my self-image.  Now that things have calmed down a bit (it's all relative, ha) I feel myself stepping back and viewing things differently.  It's all a process.  No one event is going to make or break my life or my family.  The children have meltdowns in public.  I argue with people.  I overreact at times.  Blah blah.  Tomorrow might be a good day.  Or it might not.  Walking through the day is my goal, as long as I can accomplish that, then I am doing ok.  The people who care about and love me today will still love me tomorrow.  And some of these things are out of my control.  I cannot always control my children's behavior, I cannot control how people feel about or react to me.  I used to spend hours fretting about the people who disliked me or had a problem with me.  Way too many tears were shed, way too much energy was spent.  My husband has really been instrumental in helping me deal with this. I cannot make someone like or understand me if they don't want to, and why would I even want to try?  Why waste my energy?  I have way more important things to attend to.

Probably most important- I am trying to use my energy wisely.  There have been so many days when I have felt like the "caretaker" of my children instead of their mom.  What's the difference?  I have felt like my life is an assembly line- morning routine, school, work, dinner, play, bedtime, clean, sleep, repeat, repeat, repeat.  If I stepped away from this routine I would be behind and the rest of my week would fall apart.  Well screw it.  I spent years doing this, trying to be perfect and guess what?  It just didn't pan out- I have cavities, my family room rug has juice stains on it (not to mention dog hair), I still have 5 pounds to lose.  A year from today, will I remember the toys being picked up or will I remember sitting in the back yard with my family?  Well honestly the way life is these days, the answer is honestly probably neither, but you get the point.  I will never ever look back on my life and say, I wish I cleaned more, or I wish I did more online shopping.  These moments with the boys are fleeting- and especially in our situation, they are both still in that "window" where early intervention can make all the difference. So that is where my efforts need to be focused.  And my house can just stay messy.  Because Nathan holding out his arms to me and saying "come" means much more to me than all of his books being organized on the shelf. 

Am I able to keep this perspective all the time?  Hell no!  My initial reaction when I am snubbed by someone is still to feel devastated.  It takes me a few minutes to step back and remind myself that I am worthy of being cared about, and that I am loved by the people who matter and want to be a part of my life.  But I get there now- and that matters.  Do I still run around like a maniac trying to get every square inch of my home clean at times?  For sure- ask my husband- he knows to stand back, lol.  Do I cancel appointments for myself because I have to choose mine or the boys?  Absolutely.  But for me, the fact that I am making the appointments at all is a huge step.  The idea that I am leaving the dishes in the sink and sitting down with the boys is huge- even though that stack does still call out to me.  But guess what?  The world doesn't stop turning just because I have dirty dishes.  How about that?

Monday, 22 October 2012

#Autism is not Contagious- Come Closer Please!

It's the oddest thing.  I will be out with the boys somewhere and Nate will start stimming.  Some people smile at him, but others back away, clearly uncomfortable with this atypical behavior.  For the longest time his stimming didn't seem that out of place- he was still a baby- lots of babies do the whole total body stiffening thing- it's a sign that their neurological system is not fully mature.  But he is too old to brush it off as that anymore.  He is different- and it is obvious- from the monotonous sounds to the jerky movements, to the lack of speech. My little boy is different.  And even to the casual observer it is obvious.

This is also the case with Jack, although not to the same extent.  With Jack it's more like people are overwhelmed- he goes up to everyone (and I do mean everyone) and does his Wall-E impression or tells them about his 15 to 20 pet hermit crabs in great detail.  Note:  he does not have any pet hermit crabs, not one.  The usual chain of events goes like this:  Jack approaches person (almost always an adult), Jack starts talking, the adult acts interested for a minute, the adult realizes he is not going to stop talking.  An annoyed look replaces the previously open expression on their face, sometimes they even walk away.  I was given some cards by the receptionist at the boys' OT awhile back- I think they are from TACA.  They are called, "my child has autism" cards.  Here's the link:

I have never handed one out.  I have a hard time drawing even further attention to the boys.  I have been letting Jack go a bit more lately- he is starting to "get" it a bit more- social behavior I mean.  But when he is in a stressful or new situation he has a tendency to revert back to his old behaviors.  Which he did yesterday, when we took him to a fall festival at a farm.  Look who he had painted on his face.  Who did he show it to?  Describe it to?  Every single person he encountered, and some that he sought out.  Many people are very kind about it, some find him adorable.  Then the others....
I want to be clear.  Jack did a GREAT job at the farm yesterday.  He went on a tractor ride, he jumped on a trampoline, he played inside some playground tractors.  As always, reactions are just a bit more intense with him- if he likes something, it's LOVE, if he doesn't want to do something it is a meltdown.  There is very little gray area with him. 

I have definitely developed a thicker skin with respect to the boys and perceived reactions to them.  Even so, I am a very sensitive person.  I feel people's looks, I can sense those stares, the reactions.  It makes me feel incredibly protective of both boys.  Nathan sat for as long as we would let him yesterday playing with straw (waving it in front of his face).  I saw a few looks.  Yes some people noticed his odd behavior.   Probably way fewer people than what I think.  It's not like everyone is sitting there staring at my kid.  That's just how it feels :)
Confession time.  I used to be one of "those people".  I avoided kids that had disabilities- I never wanted to seem like I was staring, I felt awkward.  I am here to tell you that as a parent of special needs children, I would love for you to talk to my boys, to treat them like the wonderful little people that they are.  It's difficult I know- you don't want to say the wrong thing, you don't know what kind of interaction they are capable of.  So what?  Give it a try.  I don't want to have to hand out those cards.  I don't want to have to explain myself, or my children to anyone.  I want them to be accepted. And let's face it- according to the new research, it's 1 in 88 children that are affected by autism.  Until more effective treatments are found, or preventitive measures are taken (which would mean actually acknowledging the problems- not likely), this is not going away.  So try doing what I am learning to do- embrace it.  Don't push it away, don't turn away, don't make faces or act offended or annoyed.  Don't pretend you don't see either, I know better.  Ask me questions, ask my child questions.  I can't guarantee that they will answer, in fact, it's much more likely that they won't.  But I believe they hear everything, that they absorb and observe way more than they get credit for.  And the more that they see people trying to communicate with them, the more likely they are to try to reciprocate, right?  So come closer, talk to them, you might be surprised. 

Saturday, 20 October 2012

#Aspergers, #Anxiety and the Potty Mouth

Ahhh yes.  Jack is prone to periods of anxiety.  And unfortunately, things seems to fly out of his mouth at these times.  And it's really whenever he is in any way uncomfortable- if we are tickling him and it's gone too far for him, if we are swinging and he's going too high.  All of the sudden a**hole will come flying out of his mouth.  It's not like we haven't corrected him over this or punished him for saying this a million times.  We have.  And I honestly don't think he's doing it to be naughty.  He's changed it to ashhole for the most part, it's hard to punish him for this, although we have made it perfectly clear that this is not ok either.  It's tough when your kid calls you an "ash".  How do you even respond to that?  When he was younger, it used to be idiot.  We told him this was not acceptable, so he shortened it to "idi".  This is legend among our family.  In fact, my coworker's entire family has adopted this term- even her kids who live outside of her home use the term "idi" to describe someone they don't like. 

So is this a punishable offense?  I know that Jack has trouble expressing emotions, and sometimes I feel like this is just him trying to express that something is really bothering him or stressing him out.  He knows these are "big" words and that's why he uses them.  I want him to express himself, just don't want a potty mouth around the house.  I guess it doesn't really matter what I want, since all of the reprimands and punishment in the world don't stop it.  Kids with Aspergers are prone to Tourette's like symptoms, sometimes I think this is part of that.  It's just hard to know how to handle it. 

This morning the four of us ended up in our big bed at about 4:45am, everyone always seems to wake up especially early on the weekends.  John went to get Nate and bring him in when he woke up.  The minute he realized that Jack was in the bed he went ballistic.  He does not want Jack to touch mommy- at all.  So Nate was on one side of me, Jack on the other.  Nate kept swinging his little legs over me to karate kick Jack.  Jack kept telling Nate he was an "ash".  Then of course he would recommence his baby lion persona of the week.  This involves the most annoying high pitched squeak you can imagine.  It is actually very authentic.  This would in turn tick Nate off all over again and the whole cycle would begin again.  Just another relaxing morning at our house....John and I ended up hysterically laughing, because really, what else can we do?  At least they're interacting right?  Ha

Thursday, 18 October 2012

You May be An #Autism Parent If....

So I have been a part of the Twitter Autism community for a short time now, but I have to say it has been one of my most positive experiences as an Autism mom.  I was telling our marriage counselor last night that not only is it a constant source of information and resources, it is also constant validation.  I am hearing so many of the same experiences that I have on a daily basis.  It is refreshing and reassuring.  I am not alone in the things I observe and live with.  For instance, there is a whole thread that is- you may be an autism parent if....

I will post some of my favorites, just so you get an idea.
You May be An Autism Parent if:

You've learned what really matters in this journey of life

Your child is turning out to be your teacher...

Your child tells you the same things/stories over and over and over again until you want to scream!!!

You're grateful for any achievement your child makes, no matter how seemingly small

 The really great days stand out because they are so rare

You feel like a chemist each night fixing meds and vitamins.  It's funny because it's true.

The walk home from school takes ages as s/he has to hug each lampost they pass.

You don't pay attention to gender specific toys or movies, as long as your child loves it, that's what matters

You cut ties with all negativity/judgement and focus on those who build you up and support- nobody else matters.

You feel like everyday is a battle with the school system.  Advocacy never takes a break. 

The morning starts with a meltdown over which light switch to turn on.

You consider adding "days without incident" sign to the wall

Almost every day you feel the highest of highs and the lowest of lows within seconds of each other. 

Your son has full conversations with himself on a regular basis.  And you find out a lot about your son this way.

You have to explain the next days plan every night before bed to make it through the next day or you could pay.

Your child has to go to the surgery center and go under gas to get their teeth cleaned.

binder has a whole other meaning- yours is full of OT, PT, IEP, GI consult, neurosych, lab tests, speech eval...

You want to smack anyone who says, don't worry, he will grow out of it.

Any single one of these could apply to our family on any given day.  And most families of a child with autism.  This sense of community is priceless to me. 

Wish I could give each person credit for the thoughts they shared, instead I will just say, if you are on twitter, type in #youmaybeanautismparentif.  It's worth the read. 

Tuesday, 16 October 2012

Little Annoyances that Equal Huge Blessings!

This will be quick.  It has been a busy day- Nate had his ABA home visit today and it went well.  He is now doing matching solely with pictures, which is a HUGE step.  It's really cute though, they give him one card to match to the other card (there are like 4 on the table) and he taps his card on the matching one when he finds it- ie, he is making it point.  Just like when he points to the ducks in our book!  So sweet!

Anyway, I was just sitting here working on an urgent case and Nate is standing here driving me nuts!  More, more, more, pops, pops, more, come, get the picture.  I turned to him to say hold on mommy's busy and that's when it hit me.  Nathan is driving me NUTS!  Whoohoo!!!  Getting him to say ANY word used to be like pulling teeth and here he is getting in my face and talking talking talking.  My slight annoyance has suddenly turned into pure joy.  What a blessing!  Have a great night!

Navigating the School System When Your Child Has #Asperger's or #Autism

I am venturing into dangerous territory these days.....but I am feeling overwhelmed about how I should be approaching Jack's issues at school.  I do not want to be a parent that the teacher dreads talking to, I don't want to be a parent bully.  But I am worried that my son is not getting all of the services he needs at school.  It just doesn't seem right to me that a child with what I would consider substantial fine motor deficits is only seen 3 times a MONTH at school.  And gets 30 minutes of special education a day when he can't sit still in his chair for 5 minutes. 

I volunteered in Jack's class yesterday- it was actually a very pleasant experience in terms of meeting the other kids and watching Jack handle the transitions fairly well, even with mommy there as a distractor.  He went from center to center without complaint, even though he wasn't coming to mine right away.  When he came to mine he talked to me A LOT, but didn't completely monopolize my time.  That being said, yesterday morning was the time that the OT was working with him, so she was moving from center to center with him and redirecting his attention frequently.  And she is good.  The three times a month that she gets to see him.  Which is not nearly enough.  But even after she left, Jack sat on the rug with his lunchbag waiting to go to the cafeteria, he did not get up and come over to me, until his name was called for lunch, at which time he came up and threw his arms around me and said "mommy, I sure am gonna miss you!".  What a kid.  I met the three little boys he is constantly talking about- they seem like nice kids, and they had quite a lot to say to me about Jack, which was so cute, and comforting at the same time.  They like him too!

The rough part- the "center" I was running involved cutting pictures out of magazines and writing the names of the objects (all starting with S).  So I helped every child in the class spell and write these words.  And I saw where Jack's handwriting is in comparison to every other child in that class.  I can't even explain it.  All of these letters were formed completely independently, from dictation.  Half the time we need to hold Jack's hand still and force him to form the letters.  His strength is not good either, it is a constant struggle to get him to push down with enough force to really make his writing readable.  In class he has the short pencil, a special grip, and a slanted work top to try and help him gain more control.  And the OT was drawing a box where each letter should be in order to try and help him keep his writing somewhat straight, as he is usually all over the place.  Did it help?  I think so.  But what good does this really do for an hour once a week????  How is he supposed to retain these techniques when they are done so sporadically?  I am sure the special educator tries to reinforce as much as she can, but there is no room for much individualized attention in a class of 24 5 years olds, so how can his teacher be expected to do these things regularly?  The school psychologist is coming to observe Jack on Thursday, and I am hopeful that there will be some recommendations for changes, or in other words, increased services.  If there are not, then mommy may have to request an IEP meeting.  It's October, there is plenty of time to get a good system in place for Jack.  And telling me that they are "short on aides" is just not going to cut it with me.  If there is a need, they need to fill it.  End of discussion.

Sunday, 14 October 2012

Working with Jack's Teacher

Today my faith was officially restored in Jack's team at school.  It was very difficult to transition from the school where he attended pre-K to the new one.  It is a fabulous school- it's just that when you have a special needs child it's not just a new teacher, new kids, a new environment.  It's a whole new team- special educator, OT, speech.  These people (and of course the teacher) can make or break Jack's school experience.  And I certainly don't want him to have a negative experience, I want him to like school.  Thus far, I could tell that Jack's teacher has been a bit stressed about him.  I will not say overwhelmed, as she is a very seasoned teacher and I have no doubt she's worked with kids tougher than him.  We have been exchanging emails, and at first I was hearing what was wrong but not getting the impression of any suggested solutions.  Looking back, I think she was almost confirming with me that I see the same issues at home.  And after all, I am the one who contacted her about issues I presumed she was facing, just knowing my son.   I am not one of those parents who cannot see my child's faults, I am well aware of the challenges that teaching Jack must bring.  And I can empathize and sympathize with her.  Honestly, the first time a teacher brought Jack's classroom issues to my attention, I was worried and scared, but I was relieved. I was a first time mom, and when I tried to talk to friends and relatives about him and behaviors that were really concerning me, I would get responses like, my kid does that too, or YOU did that too.  And they weren't lying, each one of their children may have had issues with whatever behavior we were discussing- the problem is that Jack has issues with ALL of those behaviors.  So I walked around for close to 2 years feeling that something was off but feeling like I must be a moron because no one else was acknowledging it.  When I took him to Child Find, it was a relief to me.  It was not a happy thing, but they validated my concerns, and frankly some of the weight of all of this was taken off my shoulders.  I was no longer the only one who was aware of the situation.   

I have been eager to work with Jack's teacher, but unsure.  I don't want to seem like a pushy parent (unless it becomes necessary), or give her the impression that I don't have faith in her experience and expertise.  But of course, he is my son, and for every hour that she is observing some type of Asperger's or ADHD type behavior I have probably had a hundred.  She emailed me on Friday and said that she has been trying to give Jack some type of incentive to finish his work- that she gave him a stuffed crab and it seemed very effective, but that the other kids were of course jealous that he got to hold it.  She asked if I by chance had anything like this at home that I could send in.  I almost choked with laughter when I read that- do we have crabs?  HA  I told her I would be happy to send anything at all in to school that would help.  I also suggested a "short" pencil, since this seems to give him more control, and a fidget for circle time (basically a toy he can fiddle with so he doesn't feel the need to move around so much- like a kush).

I didn't hear back from her this weekend, not that I expected to.  In the meantime, we had our appointment with the pediatrician yesterday.  I took in examples of Jack's papers and we had a nice long discussion.  On a Saturday.  She strongly feels that Jack will eventually need to take some type of medication, while observing him she commented that it would be nearly impossible to get him to sit still in class.  Then of course she called him brilliant, and daddy decided to floor her by asking Jack to name word war II airplanes- which he did for about 10 minutes.  In terms of the medication issue, John and I are making our educated, informed decision.  I know that I am usually very open about everything on this blog, but this is one thing I am not ready to talk about.  I will touch on it eventually, just not right now.  I will say that I have complete confidence in our pediatrician and take her recommendations very seriously.  Ironically, I ran into Jack's assistant teacher from pre-K in the grocery store last night.  Please try not to be too jealous of the glamorous life I lead- my solo grocery trip is the highlight of my week and it's so nice and quiet on Saturday night (yes, I am pathetic, and proud).  At first she just said hi in passing, and I figured that was it.  But we ended up in line next to each other and she came over to ask how Jack was doing in kindergarten.  I gave her a brief summary, she didn't seem surprised, but she did express multiple times what a sweet sweet boy he is, and that she and the head teacher had been wondering about him.  She told me to be sure to let his current teacher know that they would be happy to talk to her. I was touched. 

I promise, this will all become cohesive :-).  I got an email from Jack's current teacher this evening.  And, while some of what she had to say will always be hard to hear about your child, it made me realize that she is really pulling for Jack and willing to go above and beyond to help him.  The fact that she emailed on a Sunday alone was very impressive.  She thanked me and said she would love for me to bring those things in (I am volunteering in the classroom tomorrow- gulp), she also said they would be sure to use the short pencil.  Not sure why that didn't end up in the OT notes from the previous school.  Oh well.  She told me they are really short on aides at the school right now, and that the special educator is talking about pulling him from the classroom to work with him.  She has also contacted the school psychologist, who is going to come observe Jack this Thursday and make recommendations about how to proceed in terms of assistance in the classroom.  I am hopeful that this might yield additional help for him.  Then she said the thing that made me realize that she rocks.  She told me that she had called Jack's teacher from last year to talk about him.  About what had worked best in the classroom, what his strengths were, etc.  I was so glad to hear this.  To me, these efforts really show a great deal of dedication and concern.  I know for sure that she is in Jack's corner.

I know that I should probably be more upset about how much Jack is struggling, maybe I am just numb, or maybe I am developing a thicker skin.  It helps that his pediatrician reminded me that with how smart he is, and how easily he acquires knowledge even with all of the hurdles he has to face, he doesn't even really "need" kindergarten curriculum.  He needs the socialization, he needs to learn classroom "decorum", etc.  Any additional knowledge is really just cake, as he is pretty advanced academically.  The fact that we are confronting these problems early will give us the time to find solutions for him behaviorally before he runs into real trouble academically. That being said, I just want my child to do well in school, and feel secure and accepted while he is there.  We have some serious work to do. 

Saturday, 13 October 2012

Dinner's Ready- Accommodating Multiple Dietary Restrictions and Saving Money

I talked a few weeks ago about how overwhelmed I get with all of the different appointments, supplements, therapies, etc.  Another area that can get very overwhelming is the whole dietary aspect.  Jack is gluten and dairy (for the most part) free.  We allow him to have some real cheese, as when I saw his IgG levels that qualified him as "sensitive", they were extremely low.  Also, if you have ever seen the gluten and dairy free cheese "substitutes" you will understand why I feel like a cruel mama feeding them to my kid.  We continue with dairy free yogurt, ice cream, and avoid any other dairy when at all possible.  Nate was on the specific carbohydrate diet from December until, well, now.  I have not taken him off of it officially, and we still comply with it most of the time, but I have been allowing some cheats.  This was kind of inspired by the fact that he really hadn't made much progress while on the diet.  There are maybe 3 foods that don't follow the diet that I am allowing him to have in small amounts- his Envirokidz cereal, gluten free fries, veggie booty, and gluten/dairy free fish sticks.  Call me crazy, but I was having a really really hard time denying him one of the few things that I can tell he truly enjoys- food.  Also, because these foods are new and exciting to him, they are extremely motivating speech-wise.  He says "pop" for the cereal, and today he said "fry".  F is a totally new sound for him.  He is also trying to say cookie.  Today he also said "open" at OT and "back" to daddy.  He also said "thank you" to daddy the other day.  His OT said that his session today was probably the best one he had ever had.   So I would say he's doing ok with the new foods :-)

So anyway, when I was thinking of what would make life feel a little less overwhelming- groceries and meals immediately came to mind.  When we first implemented these diets for the boys, cost was really no object.  We were more focused on getting the right foods, preparing them appropriately and monitoring any changes.  But as we all know, these foods are extremely expensive and the grocery bills have gotten out of hand.  I have now been monitoring this much more closely and trying to find relevant coupons...which is kind of like trying to find a needle in a haystack.  I have limited my Whole Foods trips to every other week, and I buy only the speciality items the boys need during these trips.  Everything else comes from our local grocery store.  It means running to more than one store some weeks, but it's worth it.  The other thing I have done is dust off the slow-cooker and make the commitment to find recipes that we can all eat.  Sounds like a pretty tall order right?  It really hasn't been that tough.  Several of you have asked for recipes I talked about on facebook, so I thought I would post them here and tell how I modified them, if I had to, to make them suitable for the boys.  It's been way easier than I thought it would be!
Balsamic Pear, Chicken and Asparagus:
absolutely no modification needed- just make sure you have rice available, it needs to go over rice

Beef Tips and Merlot Gravy:
just used gluten free flour blend in place of all purpose, also didn't make this rice, just used regular for the boys, and John requested egg noodles. would probably go well with mashed potatoes too

Easy Slow-Cooker Pot Roast:
no modifications necessary

Slow-Cooker Meatloaf (this won some contest on Good Morning America):
This is a meatloaf, have been making this forever.  It requires the most modification- substitute milk with unsweetened coconut milk, use gluten free bread crumbs.  turns out really well- just use a little extra of the bread crumbs as the first time I made this it didn't hold it's shape very well.

I also roasted a chicken in the slow cooker and then made chicken noodle soup the next day.  The boys won't eat soup so we used real noodles.  yum!

I have the following planned this week:
Applesauce Chicken:
Brown Sugar Chicken
Sweet Mustard Roast Beef:

This website, a year of slow cooking, contains recipes that are all gluten free.  None of the above recipes require any modification at all.  Some of the others on the site do have dairy, but that's easy to substitute.  None of these recipes are expensive, none are anything crazy that the boys wouldn't try (although Nate doesn't really like beef yet), and they are all EASY.  And yield leftovers.  Added bonus?  The house smells great all day while I'm working.  I am hoping to keep this habit I collect more and more recipes hopefully it will get easier to plan.  Just knowing that dinner is taken care of eases my mind quite a bit. 

Friday, 12 October 2012

Insurance Rant

OK, I am a nurse case manager for an insurance company.  This is a double-edged sword FOR SURE.  This was never what I would have considered my "dream job", but it actually has come to be exactly that- because of my family.  It enables me to be close by, have a regular schedule, and get the boys to appointments all while making a good income.  And I love helping people, and I feel like I really do that- I work with organ transplant candidates and recipients, for a medicaid/medicare insurance plan. 

That is why I become all the more enraged when something I know should have been done, and should not have been difficult, slips through the cracks for my kids.  I got a call from Nate's OT today, at 4pm, stating that Nate has reached his 60th visit and that if I want him to be seen tomorrow I will have to pay out of pocket, as the insurance company has no record of him being granted extra sessions.  This, when I have a letter from the HR department of my husband's work stating that Nate has been granted these extra sessions for this year- enough to take him through December twice a week.  First of all, the health insurance company was not even given the "freedom" to make a medical determination as to whether these extra sessions were necessary.  No, it was fully a financial decision by the HR department, who then needed to contact our insurance and inform them of this change.  Somehow, this did not occur.  Grrrrrrrrr.......My issues with this situation are many- first of all, the insurance company has nurses and physicians whose sole job is to determine medical necessity of such changes.  So why weren't they entrusted to do this?  Why did it have to go through HR in the first place?  And why the break down in communication?  My husband and I certainly did our due diligence, he wrote a letter fully explaining the situation and was "granted" these sessions, but told that if we want Nate to be able to go next year, we will need to subscribe to the more expensive insurance plan.  It costs 3x as much.  Nice.  Not to mention that even with the plan we are on, they only allow 60 sessions a calendar year- and that is the number of sessions of OT, PT and speech combined.  So if I was taking Nate to speech as well, we would have run out of sessions when?  In May?  How is that reasonable?  I mean, I always joke that I paid five dollars for each of my children- clearly that is not accurate over all, but truthfully, I did pay one five dollar copay at my first OB appointment and that was it.  Pretty sure that cost the insurance company more than Nate's OT sessions- I didn't have a baby this year- I would like a transfer of funds, lol.  Just so frustrated with this.

And while I'm at it, let's just touch on the inequities of different insurance plans in general.  I find myself practically lunging at the T.V. during the debates this year- being in the trenches of administering both medicaid and medicare has changed my views on things so much.  Knowledge can be a scary and maddening thing.  I want to make clear before I continue- I am not criticizing medicaid and medicare for the benefits they provide.  I am criticizing private insurance.  Because, see, I KNOW what kind of benefits the medicaid and medicare recipients are afforded.  And I know the benefits that my family, who pays for their insurance, is afforded.  I know that my clients often receive sedan service to their medical appointments- not a bus pass, not an ambulance, SEDAN SERVICE. I know that if we approve a certain number of visits for a member and they end up needing more, the provider simply has to write a letter stating why this service is necessary and after review, the member can have the service.  I know that my medicaid recipients have little to no copays on medications.  And that if they by chance have a substantial work history and qualify for medicare on top of this (because of their hard work or severe medical condition), they actually wind up paying MORE for their medications.  Why?  Because medicare is not as comprehensive as medicaid, and many states, in an effort to cut the budget have decided that if medicaid (which is state run by the way, not federal) is the secondary insurance they will not cover the difference on prescriptions that are covered by medicare.  Medicare's copays are way more expensive than medicaid's.  Soooo..... I find responsible people who have qualified for medicare in addition to having low enough income to qualify for medicaid are being punished.  This is pretty common among my organ transplant patients- they work, they get sick, they can't work, they qualify for medicaid.  And then when they either hit a certain age, or begin dialysis they qualify for medicare.  Sounds great right?  Dual coverage?  Guess what- transplant meds, they're really really expensive.  If the medicare copay is a percentage- half of these patients can't afford their meds!  Seems like punishment to me.

Can you tell I am passionate about this?  I did what I never ever do to the insurance coordinator at Nate's OT- and I'm not proud of it.  However it served it's purpose.  I yelled.  I said "so what you're telling me is that I have to call HR and I have to call the insurance company and bring THEM together, which I'm pretty sure they should be able to accomplish on their own, or you won't see my son.  Oh, and you're telling me this at 4pm on FRIDAY?  When his next appointment is Saturday?"  I don't think so.  Our family is a goldmine to the therapy center- both boys go twice a week most of the time- I think they can work with us.  And she agreed eventually that if I sign a waiver stating that if the insurance refuses to cover the sessions I will be responsible that they will see Nate tomorrow.  You know, the state funds medicaid, and the federal government funds medicare- but when my patient needs something outside the "norm" I don't have to give them a buzz to get the needed care.  I just find this strange, that's all.  Also, to be clear, we love the boys' OT's.  They are wonderful to them, and the insurance coordinator has been great too- she is the one who notified us ahead of time that we were coming up on our "cap" in the first place.  So that we could get this modification in place.  So I feel bad for yelling- but I am glad that Nate will be going to his therapy appointment tomorrow.