Nate- Progress and Planning For The Future

Well hello there, it's been awhile.  We've been quite busy continuing with interventions for both boys not to mention just regular summer stuff.  I've been finding it harder and harder to make myself sit down and write in the evening.  My life is pretty full, and really I do like it that way.  But it's still nice to get a chance to process things.

We are continuing to see positive changes in Nate.  We are working with the recommendations that came from the zyto scan we had in April and using quite a bit of homeopathy as well as treatment for chronic infections- I can say with great confidence that this is the best period of improvement that Nate has ever had.  His speech continues to improve, he is repeating more and more words, he said "mimi" to his grandmother for the first time a few weeks ago (that in and of itself is tear worthy after 4 and a half years), he is saying the names of more foods,  he is trying to tell us where to go, what he wants, what to do, etc.  He has a "tv technique" now, and boy is this kid bossy!  He hands you the remote, shouts go when you land on the wrong program (this is netflix or amazon streaming) until you land on the right one, then as you select episodes, he grabs the remote from you, and when the episode comes on, if it is the wrong one, he hands the remote back and says go- once you choose the right one, he takes it away and sets it down.  I of course verbalize "not this mommy", "yes this mommy" as we do it, but he is certainly doing a good job of selecting.  Same thing with food- if you try to hand him an item he doesn't want he almost knocks it out of your hand, until you produce what he wants, then he double taps and says "want" (and then I make him say the name of the item).  He also clearly comprehends what we are saying at a much higher level, as evidenced by the tantrums he throws when it's not what he wants to hear.

And of course it's not just language- it's his level of awareness.  Let me tell you- having waited for this as long as I have, I appreciate every development so much now.  I mean watching Jack learn how to read this year was completely miraculous, especially after watching Nate struggle so much with communication, and these other new developments are no less amazing.  John feels the same way.  One day last week Nate noticed Darby our little dog, he laughed and said "dog".  Yep, he noticed the dog and thought he was cute- how awesome is that?  And another really cool thing he is doing is looking at family pictures- literally picking them up and looking at family members- he particularly likes one of my whole side of the family from Thanksgiving last year and then another one of all of us with his mimi from Halloween.  He is totally noticing that they are pictures of people he knows.  He has an "interest" in dinosaurs on tv, and he is actually looking at dino books- seeking them out.  He turns his head the FIRST time I call his name every single time.  I can't say that he does for everyone else on earth but for me he does- and he did for my girlfriend last week now that I think of it.  Tonight he was pulling out his dresser drawers and investigating for the first time in years- both John and I were like- WOW!  Yes, he is 4, and yes, WOW!  Last week he pee'd on his bed and laughed at me.

We are seeing so many good things from Nate.  So I am going to keep plowing through with these interventions.  And.....these improvements are giving me some hope for his future for sure.  In a year, no matter what, he will go to kindergarten equivalent.  Whatever he is ready for- it will not be mainstream- that much I know, and I am not going to set myself up for devastation.  So it will either be a specifically special needs school, or what's called an autism "cluster" site classroom, which is in a mainstream school, and enables the children to be mainstreamed for things like lunch and "specials" (gym, music, art), and eventually academics if  they progress to that point.  It would be much easier for him to start there than for him to move there (or at least that's how I perceive it and what I want in my mind).  The biggie?  He has to be potty trained.  Potty training.  Potty training a second child with autism.  potty training.  ok.  I am doing my research and girding my loins.  I will NOT have this be the obstacle if all of the other things that we are doing bring him to a place where he has the opportunity to be in a mainstream school.  So this is going to be the new focus- even if we have to spend the month of August at home.  all the time.

Expect an upcoming everything potty training and autism post.  But don't get me wrong, this is a great challenge to have- a year ago- it wouldn't have been an option- I feel blessed that we're here!

The Scoop on Nate- Latest Developments

First of all, to those of you who have donated to Nate's medical fund- I want to make sure I say thank you.  Some of you I don't even know, some I haven't spoken with since high school.  I can't begin to express how touched we are.  So here's what we know so far, I submitted all of the paperwork to take both boys to Dr. Usman; I decided it just made more sense to take them both at once, and plus, the last few posts that have been about Jack have made me really think about how much his life is impacted at this point- it's a lot.  I didn't hear back for quite awhile, so I emailed the office staff, who informed me that she hasn't gotten to our intake sheets (she will then decide if she will "accept" the boys- although when you have two kids with the same developmental diagnosis few practitioners can resist), but she also shared this pretty piece of news- new patients are currently being scheduled for spring of 2015.  Sigh.  I should have expected this.  It doesn't change my level of disappointment though.

So clearly, if you have met me you know that I am not one to sit twiddling my thumbs for one of the most important years of my child's development whilst "waiting" for an appointment.  Not going to happen.  I have been looking at other, more homeopathic treatments to try while we are waiting, and am very enthused about some options.  Maybe someday I will talk about this, but not right now.

About a week ago I decided to give Nathan a break from his diflucan and antibiotics.  He's been on them for two months with no break, and I worry about his little system.  Three days later I found him standing on his head (one of his major sensory seeking behaviors from when he was first diagnosed- we would find him this way in his crib).  Not a coincidence.  And further confirmation that an unbalanced gut and immune system are significant contributors to his behaviors.  This actually gives me hope though- that's the world I live in- I just want to know how to help him.  Even if it means confirming a new problem- who am I kidding, finding a solvable problem is a big victory.

He continues with school, speech, OT, Cisco Center, etc.  I think he is in a very good place with his therapies actually.  Working with Carla "officially" for speech (she was always "working" with him, just not one on one) is very beneficial for him.  Not only is she able to sit down and work on the methods that she employs during a session, but she is able to reinforce this on a daily basis when they are working in the classroom setting.  Consistency is key for these kiddos. 

Today he was playing with Carla a little bit right before we left- they were doing some singing and then peek a boo.  Nate literally said "I see you".  I heard it clear as day.  When these phrases pop out it's like winning the lottery.  The one unfortunate part of that is that recurrence is not likely (at least not in the near future).  But Carla pushes him- she is not afraid of pushing his limits, I think that is part of what makes her such an effective practitioner.  And even though Nate often ends up crying in frustration, he is always happy to see her the next day.  It's a great balance.  Anyway, Nate continues requesting things consistently at home- he will point to which cabinet the item he wants is kept in if verbal attempts are not effective.  I guess the point of this is that he is trying, he is really trying.  His repetition of familiar words also continues.  He is still working with PECS as well, but because of how much effort he is making verbally, it's hard to decide how much to use them.  I don't want him to get frustrated, but I don't want to take away the incentive to use words (since he seems to want to use them).  So we are finding our own balance, as I guess every family does.  He will say "watch" if he wants a program on TV.  We put on netflix and he walks over and points to the program he wants, and says "want".  This is great progress, especially since it doesn't involve his biggest motivator- food.  The other day, I was giving him a "grain free cookie" (don't judge, I am an awesome mom, lol), and I said "just one".  Swear to God the kid looked right at me and said "two".  Luckily John heard it too- so either I'm not crazy or we both are ha.

This is his last full week on the Aricept trial through NIH.  He will stop taking the medication next Friday night, at which time we will go through a battery of tests- developmental, blood, ecg, and a sleep study (only one night this time, thank GAWD).  Then they will follow up with us for the next year.  I have mixed emotions about stopping the medication.  His speech has definitely progressed in the last six months, and I do think that Aricept must have something to do with that.  On the other hand, we have been very consistently treating his yeast issues also.  The positive part of stopping the medication is that we are free to try other interventions.  I have held off on certain things because we didn't know if they would interact with Aricept.  So we shall see...either way, I would highly recommend NIH to any parent who is looking for cutting edge treatment for their child.  They have been an absolute pleasure to work with.  At least from mommy's perspective. 

Giddy Mommy

I am giddy today.  There is no huge reason, just a bunch of little ones.  Things like- every article of clothing I took to the consignment store on my lunch break was accepted except two.  Victory.  Jack got a report card and is progressing nicely- even on level for his grade in most areas.  My son is just so smart.  When I think of all of the challenges he faces with fixations on some things, lack of focus on others, sensory and fine motor issues, it hits me just how smart he must be.  If he can keep up with the other kids through all of that…..he’s just amazing.

Then I got to take him to swim, just the two of us tonight.  He was swimming laps beautifully, he let his instructor THROW him in the water, he jumped in several times on his own, dove for rings, and dove into the pool for the first time (with a little assistance).  These swim lessons are so wonderful for him- his self-confidence is just through the roof, and he never ever complains about going.  He loves it.

Then there’s Nate.  As always, I will qualify these developments with the statement “he is having a good week”.  His study doctor called just to check up on him this morning (no I am not kidding) and when I told her about this stuff she made sure to tell me that they could not “prove” that the Aricept is causing any of this.  I told her I was totally aware of that, and aware that he could lose these things tomorrow, but that today, I’m really really happy.  She said that is just the perfect way to go about this. 

So here is what we are seeing:

Bad:  sleep disturbances- he has been up from 1:30 to 4am for the past two nights- blech

Good: 

He is majorly opinionated and fighting going to bed in his own bed every night- and yes this does too go in the good column- in our world anyway.

He regained “go”, “chip”, and a couple of other words in the past few days.

He has learned how to give kisses, to mommy only, but it is the cutest thing ever and he does it whenever I ask- what more could a mom want?

He started clapping his hands today for the first time in close to a year.

Bear with me, I edited this video- but right now it's still long- the end is worth it- promise!!

 

He is choosing his food- I hold out two items and he (with his pointer finger) shows me which one he wants.

That’s all in the last week.  Once again all I will say is- this is a good week.  Oh, and everyone- please pray, ok?

Then there is my husband- I was trying at dinner to get Nate to clap, and of course he wouldn’t.  I was afraid John was going to think I was making it up.  Instead, while Jack and I were at swim class, he sent a video of him working with Nate to get him to clap- and he did it!  John was so patient, and tenacious.  He is a good autism daddy.

Yay family!!!!!

Habilitative Services In Maryland for Kids with Autism- A Must Read!!!!

Wow.  Seriously for a while today that was all I could say. 

My project for the next few weeks is to figure out our insurance for next year.  I have been considering enrolling the boys in dual coverage (both the insurance from my work and the insurance from John’s) in order to have more allowed services, but mainly to have more therapy sessions.  Right now, as I have mentioned in the past, the rehab services dictate that each individual is limited to 60 visits for OT/PT/speech combined, which is woefully inadequate for both of them but for particularly for Nate who is in desperate need of speech therapy.

John’s work sends out a written bulletin detailing the medical plan options.  I was perusing the choices and immediately focused on the rehab benefits.  The most expensive plan offered 100 visits total which would not allow Nate to have both speech and OT once a week for the year- was getting pretty upset about this because my insurance premiums and deductibles are much much higher than John’s (and yes I work for a health insurance company).  Then I noticed something new.  Maybe I’m nuts, but never before have I seen a column for “habilitative services”  under the column for rehabilitation services. 

Here is the definition of habilitative services:

“Habilitation Services - Health care services that help a person keep, learn or improve skills and functioning for daily living. Examples include therapy for a child who isn’t walking or talking at the expected age. These services may include physical and occupational therapy, speech-language pathology and other services for people with disabilities in a variety of inpatient and/or outpatient settings.”

Here is what that column said:

Habilitative Services for Children Under Age 19

(Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy)

Calendar Year Maximum:

Unlimited

This benefit language is enough to make an autism mom’s heart start pounding.  What IS this?????  I want it!!!!  I emailed John right away and asked him to talk to his HR department.  But I wasn’t hearing back soon enough, so I googled my husband’s work, insurance, and habilitative services.  And that’s when I saw it.

An update to our current policy for 2013.  An update stating that effective May 1^st, 2013 habilitative services are covered for the above diagnoses with an unlimited calendar year maximum.  And the policy was made retroactive to January 1^st, 2013.  Basically this is saying that my kids can have two OT visits a week if they need them AND speech therapy every week.  Obviously I snorted something this morning and forgot about it.  So I called Cigna and read this to a member services representative, who stated that she did not see this under our benefits.  Sigh, maybe I was reading it wrong.  Damn it- I really liked lala land.  And then, the manager comes on the phone and asks ME if I can fax HER a copy of this policy.  Hell to the yes!!!  So I did.  I haven’t heard back from her yet. 

But I did hear back from John- the HR rep was not aware of this policy change either- but she looked it up and…..it’s true!!!!  I called the boys’ OT right away to let her know- she wanted to see the document too- she said they had only ever had one other client who had a habilitative services benefit and they had to submit a special application, yada yada.  So I emailed it to her.  She instructed me to get letters for the boys from their pediatrician stating that they have been diagnosed with autism spectrum disorder, so that they can bill under this service from now on.  Did you hear that???  The insurance company is going to cover something BECAUSE my kids have autism.  We don’t have to say “developmental delay” anymore.  So I called for the letters…and now, we should be all set.

But I was curious.  Why this wonderful, amazing, life changing shift???  So I did some research and found out the why.

http://www.autismspeaks.org/advocacy/advocacy-news/autism-speaks-weighs-maryland-insurance-reform-plan

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

Autism Insurance in Maryland

Maryland has a Habilitative Services mandate. Habilitative Services include, but are not limited to, Physical Therapy, Occupational Therapy, and Speech for the treatment of a child with a congenital or genetic birth defect (including Autism Spectrum Disorder).  When the mandate was written in the late 1990s, it was the intent that services, such as Applied Behavior Analysis (ABA), would be covered by the language …but not limited to…that was included in the law. In practice, this has not been the case. Legislation was passed by the General Assembly in 2012 to clarify what services are covered and to address service access issues with the mandate. The legislation called for the creation of two workgroups: an Autism Technical Advisory Group (ATAG) and the Habilitative Services Workgroup (HSW).

The ATAG was composed of individuals with expertise in the treatment of Autism Spectrum Disorders (ASD) and was charged with determining the medically necessary and appropriate use of habilitative services for the treatment of Autism. The ATAG submitted their recommendations in April 2013. The recommendations are now entering the regulatory process with the HOPE that come November 1, 2013, ABA will be covered under the mandate. Read ATAG recommendations.

The HSW is charged with determining: if children who are entitled to habilitative services are receiving these benefits; if those children are not receiving the services, the reasons why; ways to promote optimum use of these services; and the costs and benefits associated with expanding habilitative services coverage to individuals under the age of 26 years. Their work is still underway. Read HSW Interim report. 

Only plans subject to Maryland Law are subject to the Maryland Habilitative Services mandate. About one third of Maryland residents’ health plans are regulated by Maryland law. However, residents covered by plans sold in other states or self-funded plans may offer coverage for Habilitative Services and/or Autism treatment.
Habilitative Services information from the Maryland Insurance Administration

So the regulation has been there it appears- but now it’s being enforced.  And God willing expanded upon come November 1^st! 

http://www.mdinsurance.state.md.us/sa/docs/documents/news-center/legislative-information/042513_atag_recommendations_final.pdf

I wanted to make sure I posted about this and quickly.  Because it’s open enrollment season.  Because everyone in Maryland who is effected by autism needs to ask this question before enrolling in a new plan or even staying with the same one.  This benefit was never an option for us in the past and suddenly my husband’s employer is providing it with all of the health plans they offer.  It can happen to you too!  Do a little research!  What awesome news!!! 

Driving Without a License

OK, I can’t hold it in any longer.  Nate is doing really well the past week or two.  Not too many “new” words, but the ones he uses, he is definitely using much more consistently.  We are much more easily able to discern what he wants, although it’s still a challenge at times.

Here is the funniest and most significant thing that has changed.  Nate has been pulling us out of our chairs to get his cup or food for quite a while.  This weekend has been somewhat challenging for him on multiple fronts.  First of all, we have been on the go quite a bit, which is always unsettling to him.  But more importantly, the places we have gone and the people we have seen are familiar to him because they are the places where I take him and people he sees when I leave.  Friday night we went to Cisco Center for a little get together.  Saturday we went to my parents, where I left him for a sleep over last month, and then we headed to a birthday party which the Director (whoot) of Cisco Center was also attending.  He was not taking any chances- kid was glued to my side at each place.  It was really cute and endearing after the crying jags that occurred when we arrived at each place.  When we were at Cisco Center he was chasing me everywhere.  But yesterday he took a different, really awesome approach. 

He drove me.

Not a joke, it’s like I was his boat and my arm was his rudder.  Especially at my parent’s house.  If I wasn’t where he wanted me to be, he grabbed my hand and steered me in that direction.  He pulled me to the garage stairs and then stood behind me and pushed my legs until I walked up them.  He pulled me to the family room, in front of the couch, and then pushed my knees until I sat down.  At lunch he kept grabbing my hand and putting it on the dish that contained the food that he wanted.  He acted similarly at the party as well.  This is the first time he has done this.  He was making the effort to communicate with me, and for the most part it was not food based (which is always his greatest motivator).  He was letting me know where he wanted me to be, and more importantly he was expressing his needs.  I wasn’t wondering if he was truly content with what we were doing, he was letting me know- very decisively. 

It has even continued some at home today, although of course this is a much more comfortable setting for him.  He and I were eating lunch and John walked into the room.  All I had given Nate was a “crummy sandwich” and he was clearly not pleased about this.  But he was strapped into his booster and unable to lead anyone to what he wanted.  So instead, he started pushing John away from him and saying “go”.  Then, “I want chips, go”.  He told John to go get him chips.

We are seeing progress.  Actual, tangible progress.

O is for Obstinate- And It's Mommy's Middle Name

Nathan.

So we ALL want him to talk right?  I know that any type of communication is a positive thing, especially at this point, but I selfishly continue to want this communication to be speech.  I am picky. 

I received an email yesterday from Nate’s speech therapist at school that really upset me.  I don’t think that it technically “should” have, but as our marriage counselor says, there’s really no reason to “should” all over myself, I feel what I feel.  Anyway, it was a fairly routine correspondence, Nate’s next set of evaluations and IEP meeting are coming up (oh goody) and she was requesting permission to have an “assistive technology” evaluation done.  Basically, the school would provide him, if it is determined to be necessary, with a type of computer device to assist with communication.  I know that for many people this type of assistance doesn’t just “fall into their laps” like this.  Although truly we have done a ton of work to get to this point.  I should be and am grateful for all of the help we receive.  I will take anything they are willing to give him; I try to keep in mind that it is much easier to keep services that are given when a child is small than it is to obtain them as the child gets older.  Jack is a prime example of that. 

So what the heck is my problem?  This email made me cry.  Well duh, it’s just another “step”.  Another step towards accepting that Nate may not talk.  Now, in my response to the speech therapist, I broached the subject of still working on actual speech and she stated that using this device in no way means that they/we will not keep working on speech, and that this would hopefully actually be a bridge to him speaking.  But I know.  He has little “friends” with autism, the same age and older.  They are not whipping this device out for them.  Just my Nate.  And I refuse to accept it.  Not the device itself but the possibility of no speech.  I think that I will likely consult the advocate we used with Jack last year, who is wonderful, not because I think that Nate is being denied services that he needs, but because I want to make sure all of the bases are covered.  It’s worth the small investment to have that peace of mind. 

This revelation has kicked me into high gear.  Maybe I needed it, who knows.  I feel like I am working hard, but there is always something I’m forgetting.  For the past two years I have wanted Nathan in private speech therapy.  We have been unable to do it; our insurance covers 60 visits a year of PT/OT and speech combined, and I have chosen to make his severe sensory issues the priority as I really do think that they interfere with his ability to do the work that speech therapy requires.  He is just too distracted.  But enough.  I am tired of allowing these restrictions drive my son’s therapies; he is not getting all that he needs.  And I plan to change that.

I am calling a private speech therapist in the morning.  I am getting an evaluation.  We should have enough visits left after his once a week OT visits to cover at least two months of speech this year, and we will have to make that work.  In terms of next year, I am looking into enrolling the boys in both my and John’s insurance plans so they have dual coverage.  I have never used my benefits because of the sky high deductible, but if there is dual coverage, the other plan will take care of that.  And my coverage, I discovered today, allows for 60 OT/PT visits per year AND 60 speech visits per year.  That would be just wonderful, but I still have to figure out the monthly costs once our open enrollment information for next year is available.  But at least I have a plan, and that feels good. 

This boy will talk, I know he wants to and I KNOW that he can.

Speech And The Food Factor

Nate's language had stalled over the past few months, but right now it seems to be picking up again.  I am not naive enough to think that "this is it", but I am enjoying it, that's for sure.  Food has always been the ultimate motivator for Nate, as it is for many kiddos. His first words revolved around food and any progress that occurs seems to be at mealtime.   He has been saying "more" forever, and eventually he did add "cup".  What happened though is that he started identifying every object as cup.  And the other things he likes seem to start with c as well- corn (popcorn), chip, chicken, etc.  Below you will hear him say more cup to start and then correct to more chip.  You can distinctly hear the "ch" sound in there.  Not that big of a deal for most, but for us- well, for us it's almost tear-worthy.

Treading Water

As we enter summer "vacation", my main focus has been on finding places for the boys to be while I work, making sure they're taken care of, and trying to afford it all.  I am revisiting some old supplements that I don't feel like I tried for long enough and reading about some new ones.  My autism book stack is getting higher by the day. 

I read and read and pray that one day I am going to find that magical solution for Nate.  That some day he is just going to open up his mouth and start talking.  That the stimming will calm and I'll be able to talk to him like any other kid.  There is so much going on in there, it just feels like everything he wants to say is trapped.  I don't know what more I can do for him right now.  So I guess I am feeling trapped too.  And inadequate as usual.  I am watching babies born almost two years after him pass him by verbally.  And while it hurts, I marvel at their development.  I know their parents are thankful for it, but do they get just how much of a miracle it is?  It's something I appreciate seeing more than I can express.

I am trying to rally myself for another round of searching.  And implementing.  Sometimes I am just so damned tired with just what we are already doing.  And yet I feel that same sense of panic creeping in that I am not "figuring this out."  I mean, what if there is nothing to figure out?  What if this is just the way it's going to be?  That thought terrifies me.  And it's one that I am trying to reconcile myself to, just in case. 

In the meantime, I guess we really are just treading water.  Surviving, doing a lot of running around, going to appointments, smiling and saying the kids are doing well, and coming home at the end of the day, collapsing, and feeling discouraged.  It's a dance we have honed over time, we are getting pretty good at it.

Worth It

You know, when I signed Nathan up for Cisco Center initially, it was because I needed daycare, and because they were a special needs facility.  And Nathan liked it fine, he was always ready to come home in the evenings, but I think that's a good thing.  Everyone seemed nice, and I have been happy with my decision so far.

For the past week, Nathan has been going to Cisco for full days as his ECI class is out until extended school year starts on July 8th.  I have been very stressed out about the money- it costs $500 a week to send a child there full time.  And as I expressed to Cisco, who runs the center today, I get why it costs that much.  My child needs more individualized attention, he needs sensory stimulation, he needs many accomodations.  I mean, how many places have multiple swings upstairs, and an OT and speech therapist on staff?  Cisco Center is also meant to be more of a school than a daycare, so that also justifies the cost. They have a curriculum, and they have weekly themes.  I know that when Nate comes home with sand in his hair it's beach week!  It's just that constant dilemma of special needs children needing so many things, and these things being more expensive, because, well, they need to be.  It is going to be very difficult to keep Nate in this situation for the summer.  I have applied for grants, but won't know the outcome until probably August.  Today Cisco suggested sponsorship, asking people to sponsor Nate for a certain amount each month- it's a tax deductible/donation type situation.  But while it sounds like a great idea in theory, everyone has expenses and I just don't think it's very realistic right now. 

Here is what I know.  He LOVES it there.  John and I are both pretty sure that he was trying to say cisco this morning multiple times, and at one point we heard "fun" in there too.  Yes, this is the morning after I was talking about his regression.  I know.  Almost every day I pick him up he is soaking wet (with water)- at first I was like, what??  But really this is because they are providing him with the sensory play that he craves and needs- outdoor water play.  I know how Nate is- came downstairs from putting him to bed tonight and found my water glass on it's side and water all over the floor.  I didn't wonder for one second how that happened- he's my water boy, loves to watch water pour, move, drip.  It's a visual stim for him.  They made "donuts for dads" this week.  When I dropped Nate off this morning, he walked right over, sat at the table and was given the task of "shaker"- shaking the cooked donuts in a bag of powdered sugar to coat them.  And the bag was labeled "gluten free", so he only had contact with the gluten free donuts.

And these are just the benefits for him.  Last Friday he and I attended the end of year party at the center.  I met many of the parents of the kids in Nate's ECI classroom.  Made connections that will likely be very important for him and for me.  Connections with other moms that are walking in shoes very similar to mine. 

Cisco contacted myself and several parents a few weeks ago asking us if we would be interested in testing a communication app for children with autism.  The software developer had contacted him, I am guessng because it is a designated special needs center.  The requirement to do the testing was to have an ipad, so I said sure.  Unfortunately, it needed to be an ipad2 or newer, and ours is a 1 (which is perfectly fine for most of the apps we use) so I told him we were out.  Then the developer comes back and says he will loan me a new ipad with retina scan while we are working with the software and then donate it to Cisco center.  Several moms and I spent about an hour and a half walking through the app today (it's not on the market at all yet), not just learning how to use it, but offering the developer suggestions on how it could be made more user friendly and relevant for our children.  It was pretty cool. The other cool thing was that when I started offering suggestions, the other moms were nodding their heads and agreeing. For instance, there were about 200 possible things a child could find and touch in order to communicate their needs.  I was sitting there thinking that this was way too much for Nate to sort through right now, that he needed one screen of maybe 10 things at most.  When the other moms agreed, it made me realize that in this center, Nate is not "the most behind".  He is truly with peers.  And that's a very unique thing to find a mile from your house! 

So somehow, we are going to make this happen for the summer.  Don't get me wrong, if the grants come through, our net cost will not be horrible, it's just the upfront cost that is getting us.  But....I have never seen Nate excited to go somewhere before.  I have not seen him in a situation where he really seems to belong before.  As a parent of a special needs child, this is priceless. 

Jack Put It Best....

Nate has had a couple of pretty good days.  Words have been flowing quite a bit more freely than we have heard, well ever.  Yesterday he was mad when I went to get him dressed for school and he said "I no want get dressed"  or something close to that.  Last night John asked him if he wanted to go upstairs with mommy and he kind of repeated it.  He was trying to say "one two three" with Miss Gwen during his session.  He asked for more song at bed.

I am happy about it.  But over time I have learned to take each day as it comes, and all progress as a "good day" until Nate proves otherwise.  A year ago, I would have felt like "here we go!".  That this was "it" and Nate was going to start making huge leaps like some of the other kids.  I have set myself up for disappointment too many times, so now, I try to just smile and think, yes, he's in there somewhere.  I restarted his leucovorin after hearing one of the doctor's lectures on cerebral folate deficiency and being told that hyperactivity on leucovorin is actually a good sign.  I started at a smaller dose to begin with and will gradually increase, as treating cerebral folate deficiency is showing great promise in autism research.  Basically, I could dump a truckload of folic acid on Nathan and it might not make it into his brain, because he lacks the ability to transport the active form across the blood-brain barrier.  The treatment for this is folinic acid (a further broken down form of folic acid).  Which by the way, is what leucovorin is. 

There are some very interesting articles on this if you follow the link below:
http://www.rossignolmedicalcenter.com/articles/


So we are doing that.  And after listening to Dr. Anju speak, I also started Nate on something called "yeast aid", which contains multiple natural ingredients that support the immune system and help control yeast in the body, things like olive leaf extract, goldenseal (thank God he will now pass his drug test, lol), oregano, and cranberry extract.

http://kirkmanlabs.com/ProductKirkman/112/1/Yeast-Aidandtrade;-Hypoallergenic/

So those are the latest things I have changed.  Oh, and John has started doing some "juicing" as well.  His first John driven intervention- whoot whoot! 

I am watching, and I am waiting.  I am not allowing myself to become too excited at any positive changes- they could be transient.  I of course really really hope they are not.

Jack said it best this morning.  I asked him to go open Nate's door because I could hear him in there awake.  Jack said to me "I like Natey, do you?"  I answered "of course I love Natey".  He then said "I just have to wait right?"  I asked him what for, although I already knew the answer, he has been saying this since Natey was born.  And he said "for him to get bigger, so someday he can talk to me, right?".  He was looking at me so earnestly, so obviously thinking that Natey really is still a baby, that I felt the need to sit down with him for a few minutes and explain in more detail than I have in the past that Natey is having a lot of trouble learning how to talk, which is why we send him on the special bus every day.  He seemed to get it, and in the end, he is right, we do just have to wait.  We can try everything under the sun, but in the end, we can't control this.  Just have to pray and wait. 

Doubly Blessed

How do you choose?  Which event is more precious?  The beautiful new words coming from the mouth of your three year old?  Or the expression of unbridled joy on your husband's face when he hears it?

I have mentioned in the past that John and I had each "chosen" words that we set as goals for Nate.  Mine was "cup" which we were fortunate enough to hear quite awhile ago.  For John, it was simple- "night night".  We have been working on this seriously since Nate was about 16 months old.  We read more good night stories than the average parents because Nathan loves books with stars.  We practice with him, we role play saying night night to each other in front of Nate.  Sure there have been periods where our constant encouragement has lapsed, but really we have been trying for THAT LONG.

When you love someone the way a wife loves her husband, it is heartbreaking to see that LOOK, night after night.  That desperate desire to hear your son tell you night night.  Every time we start the routine I actually feel my heartbeat speed up a bit....please say it Natey!!!!  I have wanted John to have that for such a long time.  Of course the words are meaningful to me as well, but I know John's frustration more than anyone else does.  Just simple words....that's all he's praying for, right?

So when Nate, behind his thumb, whispered "nigh, night" this evening, I cannot even begin to describe to you the look on John's face.  And the feelings of relief and joy that I had.  Not because he said new words (although I was thrilled) but because John was able to experience that feeling of Nate achieving a goal, of knowing that Nate has gained something- because of him.  He said it to him one more time before John walked over to say goodnight to Jack.  And one more time to me. 

I know you can't read this Natey, but thank you so much for giving that to your daddy.  You just made his year.

The Trouble With Speech

OK, I have been trying to explain this for a long time, but feel like I fail miserably b/c until you see it, it's just hard to grasp how a person can not understand that speech is needed to communicate.  So today, I decided to show you with a video of me trying to ellicit some speech from Nate.

Some disclaimers:
Nate is having a rough day today
He had already had his snack and wanted more, so he was a bit less motivated than he had been about 15 minutes before.
I feel like I am a cruel mama for denying him for this long, I wanted him to at the very least look me in the eye and say "more" which is not usually that rough to get out of him, but he has not been doing so hot lately.  Sometimes I get "I want more" or "I want chip" so of course I would have been good with that too, but today it just wasn't coming

I feel mean dropping the bowl like this over and over again but it serves a significant purpose- the sound and the movement get his attention.  You can see just by watching him that me verbalizing "tell me what you want" is not going to have enough impact.  Saying it with an action, that gets him.  So that is the technique both John and I employ with him.  You can imagine how frustrating it would be- to spend 5 minutes trying to have one meaningful communication.  For both parent and child- you can hear Nate's frustration.  And mine.  Unfortunately, the single most effective way to ellicit communication is to withhold the desired object until he uses his words. 

 

Nate Has Something to Say

So I think I have mentioned before that delayed speech in autism is not necessarily about an inability to speak, but a lack of understanding of the purpose of speech, of communication in general.  Basically, what's in it for me?  Nate has definitely fallen into this category for a while now.  I used to say to his initial infants and toddlers visiting therapist that I just didn't understand why he wouldn't repeat me.  Well what was saying "duck" gonna do for him?  Not a whole lotta. 

That's why the first stage of speech development is called the own agenda stage.  Basically the child has their own plans and if communicating with you doesn't make them happen then pooh on you.  Many kids with autism stay in this stage a long long time, and Nate was no exception.  The next stage is called the requester stage.  Nate has been in this spot for at least 6 months now.  So the main time he wants to and understands that he needs to communicate is when he wants or needs something.  It all started with a simple little word called "more".  He has gotten more and more assertive with letting us know, from walking over to us and saying more, to grabbing our hand, turning it palm up, and putting his cup in it, to now grabbing our hand, pulling us out of our chairs and to the area where the desired object is.  This is part of why pointing is also such an important precursor to speech as well- it is evidence that the child gets that they need to let the person know what they want or they won't get it.  Pointing gets frustrating after awhile, believe me, my mother in law listened to me say "this? this? this?" for a good 15 minutes the last time she was here for dinner.  After all of that time I finally figured out he wanted a frozen waffle.  Yes, I am a genius, ha.

So what we have been waiting for with baited breath is the early communicator stage.  The point where the child is starting to talk for reasons other than physical needs.  It's coming, I can taste it.  And this morning I got a good sampling.  I always talk to Nate about the bus in the morning, seeing "Mr. Sam" the bus aid and "Miss Robin" his teacher.  This morning as I was talking about it he looked right at me and said "Nate, bus".  Right after I fell out of my chair, I said yes, that's right.  Then he looked at me and said "mama, byebye".  Then he started crying and saying "ma, no bye". 

This is huge.  He also has said "Annie" for the sitter and supposedly "Riley" for our dog- although I missed that one.  I am praying this amazing trend continues....

The Woman's Got Game!

OK, now I have to tell you, when we left Nate's ABA program for the ECI program the 3 year olds graduate to, I was skeptical.  He was one on one with an aid in ABA, and we had Miss Kristen who came out once a month.  And we loved us some Miss Kristen!

So when Miss Gwen knocked on our door for the first time....well, I was having the usual issues with change.  Miss Gwen comes an hour a week on Mondays.  It is almost becoming a spectator sport among those who love Nathan.  My mom comes most Mondays, and we say that it's because we all want to learn Gwen's techniques, but honestly, as my mom said today, it gives us all such hope. 

What this woman can get Nathan to do!!!!!  I mean first of all, she has him sitting in his little cube chair for an HOUR.  And focusing pretty much the whole time.  She does give him some short down periods, but for the most part it's work work work.

When I say work, what I actually mean is "play" for neurotypical kids.  She gets him to play with toys appropriately.  Today it was race cars going down a ramp (not to brag, but I can get him to do this too, lol), doing a 10 piece puzzle, building a block tower repeatedly and not only that but tricking him into wanting to do it so badly that he had to strain and reach to get the blocks- which he did.  They worked on color sorting, they played peekaboo. 

And this is the one that kills me- she got him interested in bubbles.  He has been ho hum about them forever.  In case you didn't know, bubbles are typically one of the most motivating activities for all kids, but especially kids on the spectrum.  Without this tool, it's kinda like what do I use as incentive now?  She was blowing the bubbles one at a time and he was reaching to pop them.  She repeatedly put the bubbles away- he asked for more.  We have been working on a communication technique with Nate- it's so simple that I don't even really understand why it works.  I just know we have been using it at mealtime, and Gwen used it incredibly effectively today.  It is literally a laminated sheet of paper with three dots on it.  The idea is that when Nate wants something, you take his finger and touch each dot I-want-cup.  The goal is to get him touching each dot when he wants something and eventually filling in the words that go along with it.  Well he has "I want" down pat.  We are working on the nouns, he has a few- like cup, pretzel, chip, and if that isn't what he wants he usually gets frustrated and just starts pointing in the direction of the kitchen saying "that".  What a huge improvement this is!  So today with the bubbles, when Gwen started putting them away, he would say "I want", but not be able to fill in "bubbles".  Eventually he started looking at her and pointing to each of the three dots.  He knew that he had to touch ALL THREE.  That "I want" wasn't adequate.  So he substituted the dot for the word, and when he did so, she gave him the bubbles, and repeated over and over "I want bubbles".  The hope is that he will soon replace the dot with the word.  But it's amazing to have him doing that much.  Every little step is just so so huge.  I can't emphasize this enough to parents of neurotypical kids.  I remember how amazed I was when Jack was developing speech (very very very quickly).  I can't express how hard it is to watch your child struggle so much with communication- every time we jump even the smallest hurdle- it feels like I just WON a marathon. 

And you can tell Miss Gwen feels the same about her "students".  She came in today a little teary saying that another client had his/her first meaningful speech in 2 years during their session today.  Can't. even. imagine.  Miss Gwen does have one magical tool- the cube seat with a desk contraption that goes across it.  Basically Nate is a captive audience.  Starting to think I need to get me one of those!  Of course, I'm pretty sure the desk isn't magical, Gwen is just amazing.

Take That!

OK, so first and foremost, I stopped the leucovorin on Friday morning.  Saturday morning we made it to 4:30am (as opposed to 1am), then he took a 3 hour nap on Saturday.  Sunday morning he made it until 5am, then took a 2 hour nap today.  Let's pray this trend continues.  Feeling good that I figured this out before we all went stark raving mad. 

In even more exciting news, Nathan has apparently decided he would like to take this opportunity to say "screw you" to the 1st percentile for speech and comprehension.  And he decided that the best way in which to accomplish this was to blow mommy and daddy's minds this weekend.  Here is what we have heard:  up, eat, pat, nose.  Those are definite, and for the first time, all this weekend.  Pat and nose came from some of his ABA exercises, having him "touch nose" and "pat head".  I ask him to do these at least a few times a day, and yesterday morning he decided to do them to me instead of on himself.  So he touches my nose and nonchalantly says nose.  Then pats my head and says pat.  Who is this kid???  He said "open" at OT.  He also has "remastered" ready, set "go".  My legs are sore from lifting him so many times, but I'm good with that.  I went to sit down after doing it like 15 times last night and he came over to my chair, grabbed my hand and said "come" until I laid back down and did it a few more times.  He also easily transferred this "game" to another purpose, which is an even better story. 

I rarely mention our dog, Riley, but yes, we have a dog.  We got him literally the week we returned from our honeymoon, so we have had him for about 8 years now.  He was our first "baby", the sun of course rose and set on him back in the day.  He has tolerated a lot from the boys over the years, and we have tolerated a lot of his barking waking them up.  He usually goes after a bone if he wants to play these days and will literally drop it in your lap and then begin a staring contest until you get up to play with him.  Last night he went for a squeaky toy which he hasn't done in a long time.  He was having a "puppy spurt", running all over the downstairs and basically going ape.  Nathan could not stop laughing at him.  So as I was throwing the toy, I started trying ready, set, .....and he got it right away....go!  After a few minutes he started picking up the toy when Riley dropped it and throwing it for him.  Didn't go very far and Riley seemed a bit confused by this.  Meanwhile, John and I were both staring, mouths wide open.  I have never seen Nate directly interact with anyone besides John or me at home, let alone the dog.  This was huge for him!

All such positive changes this week.  And tomorrow I increase his dose of methylcobalamin again.  Keep your fingers crossed.  This progress is surely no coincidence.  I am hoping for a really good week.

Could it "B"?

Nate has been on methylcobalamin shots since about February.  This is an activated form of vitamin B-12 and it has been found to be helpful to people with autism, especially those with the MTHFR gene (which Nate has).  The dose was increased in May.  We have definitely seen improvements in Nate with this addition, increased eye contact for sure, and slow steady progress in other areas.  The idea of giving shots for many parents is appalling.   I have been able to handle it with Nate- he was so dazed when we first started the shots that he didn't even react to the needle in his bum.  Every once in awhile I'd get a whine, but honestly he cried harder when I wiped his nose- no exaggeration.  As he became more aware, he started crying with the shots, but now he has progressed to being mr. attitude about it.  He runs away, laughing, and then after the shot he rubs his butt cheek while glaring at me just long enough to get his point across and then he goes back to whatever he was doing. 

When we went to see Dr. Brenner last week he stated that since Nate is a "responder" to the methyl-B12 but has not made a ton of progress we should go ahead and increase his dose.  I had been giving him 0.1 cc on monday wed and fri.  He increased it to 0.3 cc three times a week, but since I still had about 6 injections of the original dose he suggested I just double up on those for the next week and then go for the full increase when I refill.  So for the past week I have been doing double shot duty- Natey's poor bummer.  That being said---- there IS a difference.  An aside, these effects tend to take place very quickly, within days.  There are some kids where nothing is seen for up to a month who still end up being responders, but that is not the norm.  Once a child is identified as a responder they need to continue this treatment for approximately 3 years.  It's a small price to pay if you're seeing great improvements.

So back to the changes I am seeing in Nate- more repetition.  He is pointing to all of the different animals in his books when I say "touch _____".  He is choosing between 2 books.  When he was making a turkey at school today he said gobble.  I find him literally staring into my eyes with an intensity I didn't know he had in him.  He is tantruming more, oh joy.  There is just an over all increased awareness.  Then today I saw some physical proof of improvement.  I am not going to go into all of the science of it, plus it's kinda gross, but suffice it to say that many many children with autism have significant GI/poop issues.  It is linked with the MTHFR gene, impaired methylation, which makes sense since other individuals with this gene mutation tend to have diagnoses like IBS and crohn's.  Today, Nate had his first solid, non-grainy, and not nasty smelling poop in I can't even tell you how long.  I did a complete double take.  I know you are all thinking that all poopy diapers smell- I beg to differ!!!  We are talking BAD!  Normal poop smell is pleasant after that.  I believe this improvement is a result of the increased dose of methyl-B12 and the addition of leucovorin last week.  I believe his little system is functioning better.

Despite all of the positives, there has been one negative- and that is MAJOR sleep disturbances.  Now initially I would have said that this was more related to the fact that he is transitioning to a big boy bed, but he had several nights last week when he slept through the night.  The last 3 nights Nate has been up for literally 4 hours in the middle of the night.  And it's not that he was just awake, he was WIRED.  Reminded me a bit of Jack when he is going through a bad sleep stint.  I gave Nate a double dose of melatonin at 3am this morning and it did nothing.  I was starting to feel bummed out, as this can be considered an "intolerable" side effect of the methyl B12 if it persists, so I started googling my little heart out as usual.  Found this in a presentation given at a TACA conference by the foremost expert in methl-B12 and autism.

1. Folinic acid should be added after the first 5-week clinical trial but not at the same time as Methyl-B12. It should be added alone and its dose should start low and then be incrementally increased to see how it is tolerated. From my research, approximately 20% of children become hyper and/or cannot sleep when folinic acid is added.

So we added leucovorin- an even more broken down/active form of folic acid than folinic acid.  Guess what?  I increased the dose on Monday!  Can I say bingo now?  So tomorrow I will cut the dose of this and see if we get some sleep.  I really don't want to have to decrease the B12 when I am seeing so much positive, so I hope I am right about the leucovorin being the culprit.  Keep your fingers crossed for us.

Resources for ya:

http://www.tacanow.org/family-resources/methyl-b12-a-treatment-for-asd-with-methylation-issues/

http://www.drneubrander.com/

Unspoken Words

 

Nathan and I have an amazing bond.  Of course Jack and I do too, but with Nate it's different.  I feel this tremendous need to protect my little boy, to help him speak and express himself, since he isn't yet capable of doing it for himself.  Think of those first few months of your child's life, when they couldn't speak and you had to rely on expressions, crying, gestures, etc to know what they wanted.  No, we're not in that place anymore, but we certainly lived there for a very long time.  And the language Nate has now remains limited, and his use of it does as well.  So I have found myself in the unique position of continuing the "baby" phase for a very long time- or at least this aspect of it.  There is no one on earth who can read this little boys wants and needs the way I can. There is no one on earth who can fulfil them as well or as quickly as I can.  And Nate is well aware of that.  He comes to me whenever possible, and then to daddy.  It is apparent that he feels no need to communicate with anyone else, except his sitter and teachers when we are not there, and sometimes his grandparents.  What a huge responsibility this is.  On top of interpreting all of this, it is also my job to help him learn how to communicate more effectively.  This is true of all parents, but when you put it in the context of classic autism, it becomes a whole new ball game.  I was working at this very hard before, but now that we are participating in this "more than words" seminar, it's become a third full-time job.  And it is the most difficult of the three by far.

As parents of infants, we take so much of their development for granted, we read the books, we celebrate the milestones, but we never really think that they might not come.  Until it happens.  For instance, last Friday my neighbor and I were walking back from taking the kids to the bus stop, and she said something like, "it's amazing how fast the language starts coming around 9 months" (she has a little guy).  Then she clapped her hand over her mouth.  I just smiled and said that's completely true.  Hey, I watched it with Jack, and Nate.  I know what she's talking about.  I just never thought we would lose all of that progress and now be struggling with this same milestone over and over again. I was talking to Nate's speech pathologist about his words, and I mentioned that it feels like every time he picks up something new, something else drops off.  She said this is extremely common in children with autism.  For instance, the first new word he picked up when we started with the infants and toddlers program last year was ready, set, "go!".  Guess what I spent this weekend working on with him?  And it's harder this time- I could use a car rolling last year, this year I have to lie on my back and do it by lifting him up over my head with my legs on "go".  He needs that incentive.  Every single word we gain needs a similar motivator.  And the consistency has to be well, consistent. 

I am learning many new techniques in the seminar.  And working my tail off on applying them in daily life.  Really it feels like creative cruelty, or professional withholding.  Poor Nate.  But some of it is working.  Every time he wants something, every single time he says more (which he knows used to thrill us by the way- I am sure he's pissed that it doesn't work anymore), it becomes a 5 to 10 minute process of "more what?"  If it's cup or pops, we're golden.  Anything else, we're screwed.  The closest we get to a name is "and that, and that, and that".  Which is a huge improvement, but helpful? Not really.  If it's pretzels, I hold them out of his reach and wait, and wait.  Then after a few minutes of nothing, I approximate the "p" sound, sometimes this gets some repetition, which is great.  If not, then I say the full word.  The point to the bag and say more.......if still nothing then I pick up his hand, physically point his finger to the bag, say pretzel like 50 times, and basically jump up and down like this is the best news ever.  I have no problem with doing this in theory, it's just the whole 10 minutes to get a pretzel to the kid thing that is driving me crazy.  Another technique is working on "choices".  He usually can't verbalize which he wants, the actual goal for him is to see him scanning each item visually and eventually somehow indicating which one he wants.  The scanning thing is huge, kids on the spectrum are in their own world, so observing what is around them is a big step.  He is doing pretty well with this.  Granted, his choices are pretty obvious- I hold up pops, and then maybe a sock.  It's not like he's torn. 

I'm applying these same concepts with books at bedtime, with songs at lullaby time, with parts of toys during playtime, etc.  One other technique is to basically "put words in his mouth" while literally sitting at the same level on the floor as him with our eyes at the same height.  So if I say "time to go night night" and he screams, I say "no night night mommy!"  Help him express himself with words, and also let him know that I understand.  I know these seem like really simple things, but when your child has little desire to communicate, little desire to use words, these interventions are a big step. 

Tomorrow is Nate's first "big boy" IEP meeting.  Blah.  We already have the evaluation, they send it home with the child ahead of time so the parents aren't shocked.  Good thing.  Of course, as always, reading this crap was really comforting- yeah right.  They put my boy's receptive language in the first percentile and his expressive language in the second percentile.  They literally stated that if measured by what age level his understanding is, there has been no progress in his receptive language.  At all.  They put him at 11 months last September, and that is what the Child Find evaluator put him at last month.  I call BULL _ _ _ _!!!!!!  Either he had a bad day when they observed him in class, or they "over" evaluated him the first time.  Because if I had told him "go bye bye" last fall he would have stared at me or more likely at the floor.  Now he either throws himself on the ground in protest or if I say "go bye bye with mommy" he stands up and takes my hand.  And this is true in every aspect of daily life.  He knows and understands SO MUCH MORE than he did at this time last year.  So for the first time, John and I, while still saddened by the numbers, were able to shrug off some of this evaluation.  Because we know our son better than they do.  And they are going to put the worst case scenario in writing in order to get him the best services available.  And that's what I want for him.  So I guess I just have to take it.  And keep working, and working and working. 

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?