Naked

When I take a chance in my life, when I allow myself to be vulnerable, I feel naked.  Frankly some of my posts on this blog have been so personal that I would have felt less exposed if I were naked.  And that's saying something.  There have been many times when I have been terrified to hit the "publish" button, afraid of mean comments, too much bad advice, you know, negativity.  It's never happened.  Never.  I have been in relationships in my life where I have felt constantly judged, never good enough, not pretty enough, not thin enough, not smart enough, not shallow enough to be accepted.  I never feel any of those things here.  I actually don't feel any of those things in the autism community in general.  Walking this road has taught me a lot about not judging others, their parenting, etc.  But it has also taught me quite a bit about feeling accepted myself.  It has brought me to a point where I will accept nothing less.  That's what I deserve, and that's what everyone deserves, including our children.  I feel surrounded by loving and supportive people- enough so that if someone isn't able to see me as a person of value, someone worth knowing, then I don't want to know them.  My previous tendency was to try even harder with people who didn't seem to "get" me.  Insecurity central.  And it backfired every time.  I don't have ongoing relationships with any of those people today.  If someone chooses to push my friendship away, hey, they must not want it!  How about that- simple concept, difficult execution. 

Anyway, there is a point to this.  I am incredibly grateful for all of the support, GOOD advice, and general discussions that this blog has generated.  I have enough readers at this point that someone responds to every post- and quite often makes a really good point, or offers support that I didn't know was available. 

My class with Nathan is turning out to be a similar experience.  I am really coming to look forward to Fridays for a whole new reason- I love learning new methods for communicating with Nathan, I always leave feeling incredibly uplifted and motivated.  And the other parents- that's the best part for me.  We are all very different- different ages, backgrounds, etc- but we have such a strong common bond.  As the weeks pass we are all opening up about our children, our families, our experiences with the autism community, different doctors, therapists, etc.  It's a whole new type of education.  There is one mom, whose son is in Nate's ABA class, who I chat with quite a bit.  The group was having a discussion about evaluations, genetic testing and other diagnostic tools and she revealed that her pediatrician told her that she needs to have her 6 month old son evaluated; that he is showing developmental delays already.  This doctor has not even met her older son who goes to a specialist, and was not aware that he is on the spectrum.  She welled up just talking about it.  I seriously wanted to wrap my arms around this woman who I barely know.  If finding out that one of your children has challenges is painful, finding out that another child is affected is excruciating.  All of the thoughts that run through a parent's head- how can I possibly get another child to all of these appointments, how can I possibly afford all of these appointments, what does this mean for my family?  And my heart just broke for her.  She then said that she wants to wait a few months and see if he catches up- my first inclination then was to jump across the table, shake her and say do it now!!!!  The earlier the better right?  But every parent has to go through this period- before they even know for sure that something is amiss- of mourning, of accepting what may be coming.  And I get that.  So all I said was, it won't hurt a thing, or cost a thing to have the school system evaluate him.  And early intervention won't cause him harm.  If they are willing to offer it, we should grab onto that right?  I hope she calls.  I don't know what they would do for a baby that is 6 months old- all I could think of was that if she doesn't call now, and he ends up having issues, she will beat herself up later, or at least I would.  What a huge thing to discuss with virtual strangers- but in that setting, we're not strangers at all.  We are very likely the only people who understand the magnitude of what she is saying.  The only ones who won't say things like "I'm sure he's fine".  Because we all know that statements like that will not make her feel better- nothing will make her feel better except hearing someone with credentials say that her baby is developing typically.  So I am saying some prayers for her and her family tonight, and I hope that you will too.  Pray for her little bambino and the best possible outcome for him.  And thank God that his mom is already so well connected within this community, she knows what to do for him.  While I'm at it, thank God for other parents with similar experiences, and thank God for all of you, who make "baring" it all much less intimidating.  I can't tell you how much it is appreciated. 

Mommy Failures of the Day

OK first of all, I am of the opinion, and correct me if I'm wrong, that women have the tendency to bash themselves- a lot.  And I am a champion at this.  It has been a very busy 6 weeks and the next two weeks are going to be even more intense.  I keep trying to tell myself that after we get through this, things will go back to "normal".  Bahaha.  That's right, because then it will be Thanksgiving, Nate's birthday, our anniversary, Christmas, and New Years.  Oh and Nate will start a new school and our daycare situation will completely change yet again.  Yep, that will be much calmer.  I am feeling very overwhelmed and I just don't feel like I can give things the attention they deserve.  Here are my curent failings as a mommy:
1.  I am sitting here blogging when I should be doing my "More Than Words" homework that is due tomorrow.
2.  I went and ran errands without the kids for 2 hours after I worked all day and barely saw them- again avoiding doing my homework.
3.  I served the kids EGGS for dinner- the slow cooker has only been out once all week.
4.  Paper is taking over my house-  I mean taking over- school papers, mail, research articles, my homework (which I am not doing), newspapers, catalogs....
5.  The house is messy, I can't keep up, and I have given up trying
6.  I yelled at Jack this evening (and almost every evening)
7.  I have no idea how I am going to make it to Jack's emergency dentist appt tomorrow at 11:30 and back in time to drop him back at school and pick Nate up for our class.- I am sure I will be late- and there is nothing I can do about it
8.  I know that our family has 3 appointments Saturday morning, other than OT, I have no idea what time the others are and have no motivation to find out
9.  I haven't called the SEED study people back to reschedule (our appt was cancelled b/c of the hurricane).  Not because I don't want to but because I have NO IDEA when we will fit this in again.
10.  I am dreading Monday- family portraits and then an appt with the boys' autism specialist.  I'd rather take Jack to the dentist- oh wait, doing that tomorrow
11.  Oh, also instead of doing my homework I colored my hair- the gray was so out of hand that I haven't worn my hair down in three weeks.
12.  I have homework for our marriage counseling that I just remembered- crap
13.  I have avoided taking the boys for a haircut for 2 months- we have portraits on Monday- when am I going to do it???
14.  I almost cried when I saw another email from Jack's teacher today- stating that his attention is not improving at all, that the school psychologist came and observed him today, and the school board advocate is coming next week. 
15.  I need to grocery shop, do the laundry, mop the floors, forget about the freaking disorganization that needs HELP
16.  I need to go to the ENT to try and figure out why I had yet another crippling migraine yesterday (yeah, because that's not at all obvious right?)- I have had this referral in hand for over 3 months. 
17.  I need to make another dental appointment for myself- more of my punishment for avoiding that for so long
18.  I wanted to beat up a five year old boy tonight- Jack rarely tells me anything about school, but he told me tonight that one of his "friends" told him he looked like a geek in his Wall-E costume....grrrrrrr.....
19.  I need to make a meal for my friend who had a baby 2 WEEKS ago and haven't done it yet. 
20.  My husband and I have not been on a date since August....
21.  I want my mommy (or I do now!)

All right, is this a list I can tackle?  I think so....first and foremost, I need to stop writing this and go do my homework.  Then I am going to bed.  And tomorrow I will get up, work, go to the appointment, go to class, and fail at a multitude of other things.  Such is life I guess.  Sometimes I wonder if I will ever feel like I have things under control again.  I am guessing not.  Sorry about the grumbling, but well, that's just where I am today.  Good night :)

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 etsy.com 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!

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 :)

http://www.amazon.com/The-Things-That-Keep-Here/dp/0440246040/ref=sr_1_1?ie=UTF8&qid=1351638565&sr=8-1&keywords=the+things+that+keep+us+here

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

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. 

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.