Thursday, 29 May 2014

There For the Rainy Days

I am constantly amazed by people.  I know I know, that's very broad.  I don't know how to be more specific.  Stress in life brings out people's true colors, and sometimes it's so very hard to accept.  Autism is the ultimate relationship tester- I am not just talking marriage, I am talking every relationship.  You just never know who will be standing there 4 years down the line.   People who seemed  supportive through the happy times in our lives have,  poof! disappeared.  People who we  loved very much.  And I can no longer see the point in fighting for something that must have never been there to begin with.  We are too busy fighting for our boys.  It has taken me years, and many many tears to come to this realization.  I will be honest though, it is extremely freeing, I feel more at peace when I frame things in this way.

On the positive end of things- in the past 4 years so many amazing people have entered our lives.  People who would give you their last dime, or offer to watch your children on their one day off of the week just to give you some respite.  People I didn't even know when we started this journey, people who I met and was sobbing to within 5 minutes, and they STILL love me, and then the near and dear friends who are still there after everything.  You are the biggest blessings in our lives.  You know who you are- Jo, Rhonda, Sam, Kate, Kendra, Sarah, Megs, Cisco, Carla, Whitney, our parents, Allison, Helen B, Nicole, Lexi, heck, Dr. Vickers who has become a lifeline to me- you all have enriched our lives so very much.  And you have ALL watched me cry- not that it's unusual or anything these past few years.  There are so many others, people I worked with at Hopkins who I didn't talk to for years who reached out when all of this happened, friends from college who are in similar boats....every word of encouragement means so so much.  I try to give as good as I get, and I hope you all know that, I know that sometimes I suck, so please forgive me.

These past few months have been extremely difficult on our family spiritually and financially.  We have undertaken some very time consuming, challenging therapies with the boys.  It's very draining going through all of this with them- it's also very rewarding to hear your previously non-verbal 4 year old son say "Lawrence" clear as can be (well to me)- the name of one of his caregivers at Cisco Center.  So we are plugging along, as usual, barely making it.  But the people above see me looking tired and jump to help, ask what we need, offer support.  It amazes me, and reminds me that we are good people, that we deserve this love and support.  It reminds me of this statement, which I see pop up all the time on facebook and pinterest- this is exactly what all autism families should tuck in their back pockets and pull out whenever they are feeling isolated, rejected or low.

Wednesday, 28 May 2014

Jack and Nate's School Progress- What Next Year Will Bring

It's been a crazy, but over all , a very successful year for the boys in school.  

We had an IEP meeting for Jack earlier this spring and I realized I never gave an update.  First of all, I did it advocate free!  Hooray for me!  John came too- it was his first official IEP meeting (although he has been to other types of meetings of course). I told them to take it easy on him, they seemed to listen, ha.
So the changes for Jack:
-As I mentioned before, Jack has been "dismissed" from his special needs reading group- he is up to first grade level which is awesome so he will no longer be pulled out of class for this
- He continues to require a full time aide in all academic settings
- BUT (and all the autism parents are applauding as they read this), he can now INDEPENDENTLY walk to and from the bus, AND participate in PE and of all things, music, without an aide.  Art, is another story hahaha.  It's progress people
- He continues to have sensory needs, and will actually have increased time with the OT (and I didn't even request it!)
- He will continue with speech for social interaction purposes
- The amount of special educator time in the classroom has increased, since the amount of time he is being pulled out of the classroom has decreased
- He is pulled out for 1/2 of math and is in the classroom with the aide for the other half

I am thrilled with his progress.  I am also thrilled with his IEP.  I never in a million years thought I would use "thrilled" and "IEP" in the same sentence, but there you have it.

The crowning jewel of the school year-
I applied to be a chaperone for the spring field trip.  I didn't have time to do this- at all, but last year my attendance was basically required to help with Jack.  I was rejected!  Rejected!!!! And when I emailed just to double check, they said they were sending his aide, so he should be fine.  Whoot!

Nate- We had a parent teacher conference last week as an end of year wrap up.
- He will continue twice a week services with Miss Gwen (she does one on one ABA-type work with him)
- He will move to the afternoon class, as he will be 5 in December (which means he will start attending Cisco Center in the mornings since mommy is still working full-time)
- His speech and OT continue at the same level
- He will continue to share a full time aide with another student
The important take away is that each and every staff member at the meeting has seen significant progress in Nate.  Good stuff.

That's about it- very proud of our boys.

Tuesday, 20 May 2014

This Warrior Mama Is Feeling Burnt Out!

I’ve been kind of quiet lately, I know.  Nothing is wrong per say, I am just, I am really really tired.  I go through periods where all of this really kicks my butt, and I guess that’s where I am right now.  We had an extremely busy April and early May with doctor appointments, IEP’s, etc.  And now?  It’s time for implementation of all of the plans that we made.  And it’s no joke. 
The number of different supplements the boys are on right now is overwhelming.  When they are home I am basically giving them something every hour.  Most of it is homeopathic.  I am fully committed to trying this, which means strict adherence, to a diet, and this regimen.  It’s tough.  Have I mentioned I am exhausted?  John is supportive of all that we are doing, but I am “the nurse” so I am administering everything.  I typed up instructions for him in case I am not home.  They are complex, and I admit that it makes more sense for one person to be on top of it, as it would be really easy to get signals crossed, double dose, or forget something. 
We have been doing this for a little less than a month.  Here are the changes we have noticed in the boys.  The biggest, and most life altering change in Jack is sleep- in the last 2 weeks he has woken up in the middle of the night twice.  Anyone who knows his history knows that it is normally about 5x a week and it’s for hours.  He went back to bed both of the times he woke- and both of those times were in the last 2 days- we are out of one of the parts of the regimen, waiting for the shipment. 
Nate- Mr. Nate J  Part of the regimen is causing some detoxification- it is making him very stimmy.  But through that there is this whole new assertive personality showing itself for the first time.  A little boy who instead of crawling into my bed this morning, walked into our room, grabbed my hand, pulled me out of bed and said “go, eat”.  Got it.  When he got home from school with my mom yesterday, I happened to be downstairs.  He pulled me from the front door to the family room, handed me the remote and said “go”.  He is constantly pulling us or pushing us around the house, directing us to what he wants, AND using words to get it.  Now he could direct us like this in the past, but he just didn’t.  He wasn’t motivated enough to communicate with us.  Now he is.  When he is excited about something he turns and looks at John or me because he wants to share his enjoyment.  This is also new.  There is much more I could go into, but once again, tired.

So I guess you could say I am like the little blue engine “I think I can, I think I can…”  I will give these new interventions 100% of my energy every day as long as I have hope, which right now, I do.  But you will likely hear less from me in the meantime.  If I am not tending to the boys’ needs I am at the neurologist, or talking to the neurologist, or drugged, trying to control these migraines.  Right now I wake with a headache at least 4-5 times a week.  I don’t have time for this!  Consider my spare time filled. 

Friday, 9 May 2014

Jack's Birthday- His Way!

This year, we did it Jack’s way.  That’s the best way to put it.  My little boy turned 7 last Sunday.  SEVEN!!  I know, right?  Every year since he was born we have done a party of some sort- one year was just his play group and cupcakes but it was still a thing.  As his birthday approached this year I found myself not wanting to have a party- not because Jack did not deserve to be celebrated, as that is the furthest thing from the truth, but because every year we have to put all of these contingencies into place, for the birthday song, the crowds, any games, any toys Jack will not want to share.  There is a reason for that right?  Parties are overwhelming for any kid.  For a kid with sensory issues, especially auditory?  It occurred to me that maybe, just maybe parties aren't  too fun for Jack.   Last year was pretty good since we were outdoors on a farm and riding horses, but we just could not afford to do that this year. 

So I did something crazy- I asked him what he wanted to do for his birthday (and gave him a few options).  He wanted to go to the Museum of Natural History (Smithsonian), one of his favorite places ever.  So I arranged for my mom to watch Nate, and John and I took him for a special day with mom and dad.  This was something for HIM- we spent hours looking at bugs in the bug zoo, quite awhile looking at Lucy the Australopithecus, and lastly, almost an hour at the temporary exhibit they basically hide in the basement because no one is interested in it.  Right now it was “Birds of Maryland”.  Jack ran back and forth between the cases and as people came down the elevator for lunch he pointed out the cool birds to everyone who would listen.  That exhibit saw more action last weekend than it probably ever has.  But hey, what can I say, peregrine falcons do rock!

Jack has a sensory playgroup led by an extraordinary OT- Miss Sam, who he has worked with since he was 3.  It is every Sunday afternoon, and consists of about 5 little boys, all the same age, and all pretty similarly functioning.  It’s so great for all of them- think water balloons, shaving cream, finger paints, obstacle courses, and getting smushed at the bottom of the playground slide in mats.  Heaven to these kids right?  I asked Miss Sam if we could bring cupcakes to the group last weekend, since food items are not allowed for birthdays in Jack’s school, and I also thought it would be a good low pressure situation for all of the kids.  Trust me, Jack didn’t want the birthday song sung, it’s one of his least favorite things ever- in fact we went to a party later that day at the bowling alley and he wisely hid in the bathroom when it was time to sing.  He’s learning though right?  We got to the play group and Miss Sam had put up a Happy Birthday banner and cut the fruit into 7’s.  Seriously, there are days when I just sit back and wonder how we got so lucky- this journey is tough, yes- but some of the people we have met?  Just absolutely amazing.  We are very blessed.  Jack had a great time

On Jack’s actual birthday I made a cake and we had the grandparents over after dinner for cake and gifts.  It was a bit overwhelming just with the few of us, but he handled it pretty well over all .  I think the grandparents are adjusting to the whole idea of no birthday song, and more importantly no cheering.  I will admit that it feels odd to have a kid blow out their candles in stone cold silence- but it is HIS day right?  Did he sleep that night?  After getting presents?  Hell to the no!  He woke up for the day at about 2 am.  Some of you out there may think I exaggerate- but nope, I don’t.  The kid can go on virtually no sleep, so he was up playing with his macaw, praying mantis, and peacock, and looking at bug books for most of the night.    But I will say this- my boy had a great day!

Friday, 2 May 2014

Autism- Hate and Judgement From a Surprising Source- Other Autism Parents

Autism awareness month is over.  And I really haven’t had much to say this year.  There is a reason for that.  The reason is that I am burnt out, and frankly disgusted with much of the autism community.  I have had nothing nice to say about autism awareness this year, so I chose to say nothing.  It’s funny to watch my progression through autism awareness month- the first year after Nate was diagnosed I took him to the Roar For Autism done by Kennedy Krieger and gathered as much information about traditional treatments as I could find.  The next year, John and I attended the TACA conference, and gathered as much information about cutting edge, non-traditional therapies as we could find.  And this year?  We went to Autism Awareness Day at Sesame Place.  And that’s about it in a nutshell.  My own thought processes do not fit into either Kennedy Krieger’s idea of autism therapies or TACA’s ideas of autism treatment.  I am blazing my own trail, like so many other autism parents.  

And once again why is this?  Because no one can really help us.  No one can really tell us what has caused our children’s autism, or how we can assist them most effectively.  That doesn’t stop people from trying, or judging.  I am sick of it.  I wrote about my disgust with the general population’s lack of autism awareness earlier in April, and received so many responses from other parents who felt just the same way.  And yet, here is the most shameful part.  In many circles, the people who are really attacking each other are autism parents who do not agree with one and other.  Or, on the other side, autistic adults who do not agree with parents “treating” their autistic children at all.  And you know what??  I call bullshit to each and every person who has criticized a fellow autism parent.  We all feel very strongly about our beliefs- of what is causing autism, whether it can be treated, whether it should be treated.  But unfortunately at this point in history our opinions are just that- beliefs.  There is not one definitive answer out there.

See, here’s the thing, I disagree with many people’s beliefs about autism.  I choose not to "go after" them or criticize them for their ideas- although today I will mention them to make my point.  For instance, those who say it is a solely genetic “condition”, one that makes an individuals’ brain different and not less, and that this should just be accepted.  I ask you this?  Why have the statistics progressed in this manner?

How much of a jump is that?  And do you REALLY think that this much of an increase is due to increased awareness?  I mean really?  Because I can promise you that if my boys had the same issues and behaviors and were born 15 years ago, I would have known to have them assessed and get them help.  I found out what aspergers was when I googled Jack's symptoms because I was worried.  So once again, I think that theory is a bunch of crap.  I will say it one more time- there is NO SUCH THING as a genetic epidemic.  Genes take hundreds and hundreds of years to change.  There is no way, if this is solely genetic that we should be seeing this degree of an increase.  Right?  So guess what??  To those who think this is genetic (only), a difference in a person, and that it does not warrant any treatment, but only therapies, I disagree with you, sorry but I do. 

And that is how I do feel, that both genes and environment are at play.  And I feel very strongly about this.  However, I do not shove these beliefs down anyone’s throats.  If you have children with autism sitting next to mine eating a big cheeseburger on a big gluteny bun and washing it down with a big glass of milk (packed with hormones) I don’t lean over and say you are a bad parent and what you are doing to your child is inexcusable.  I keep my mouth shut.  Because it is my BELIEF that nutrition has a huge impact on many kids with autism.  BELIEF.  And it is your belief clearly that it does not.  We both have so called studies we could reference, so let’s not waste our breath.  We don’t have a true answer yet.  Although, of course I think I’m right, ha.

The same goes with supplementation, and other treatments- I don’t tell you that ABA/speech/OT/special education are not enough because there are clearly other physiological problems that need to be addressed as well.  That new studies are coming out on these issues daily and that I feel very strongly that you might look back one day and regret not trying these other interventions.  Nope- I run around my house like a madwoman every day getting the boys’ supplements together while making them a GFCFSF breakfast, and intermittently saying, here swallow this, and here, drink this, and praying that I am helping the boys in the long run.   I don’t tell you “shame on you” for NOT doing this, so why oh why are there autism parents and autistic individuals out there shaming parents who are trying these methods, telling them that they should accept their children the way they are and that we are insulting them by “treating” them. 

I hear stories of kids who have shown tremendous progress with these interventions daily telling their moms (now that they can) “thanks for never giving up”.  This means something to me.

So I am pissed off.  Really mad that the autism community has become what it is.  I don’t just blame us parents, I blame the huge amount of conflicting information that we are all handed and asked to interpret.  We all have to draw our own conclusions because no one else has been able to figure it out.  And we all do this differently.  And that’s not our fault- we are all individuals.  And this is a scary damned thing to have to face, every single day, when no one can really tell you what the right thing is.  What I can blame on us parents is the JUDGEMENT.  We all know what it feels like to be judged to be “bad parents” when our kids misbehave, or have meltdowns, hit themselves, cover their ears and yell, or try to run away from us.  And we know these are behaviors associated with autism and NOT our parenting skills.  Can we maybe agree to disagree about autism causes and treatments for now, and band together and build each other up rather than tearing each other down?  Maybe stop calling autism treatments that are not, as you say “proven”, quackery and persecuting  parents who are truly trying to help their children?  It’s my understanding that in order for a treatment to be ruled out, or considered quackery, one needs to know the cause of the disorder first.  Maybe that’s just me.  We are all doing our best, and we all deserve respect for this.  How can we expect others to become “autism aware”, to have respect for what we all go through, when we can’t even do that for each other?