We Made It Through Christmas

We survived Christmas.  At home.  That is basically the best I can say.  This is the first time we have had Christmas at home in 3 yrs, since the year the boys were diagnosed.   We have been leaving and going to the Outer Banks- it was a good way to just change the setting, reduce stimulation for all of us, and escape the bad memories.  We decided we might be ready to stay home this year, see our family, try to create new memories.

Here is a flashback to two years ago:

Tonight John and I went to our marriage counseling session.  It's a very touchy time of year for many people, and we are certainly no exception.  As much as I am looking forward to Christmas, my mind is still somewhat stuck on where we were as a family last year- there is only one word that fits- reeling.  There was not one aspect of life that was stable.  We were still working on accepting the boys' diagnoses.  We were changing diets, initiating many new therapies.  Experiencing major financial strain related to the boys' medical needs.  And of course going through marital strife.  The thought of even celebrating Christmas last year was overwhelming- I know I just wanted to crawl under a rock and stay there.  

Alas, last year John and I were not nearly as wise as we are now.  We tried to make a nice holiday "for the kids".  I have come to realize that that phrase means nothing if mom and dad can't survive the experience.  The boys can not enjoy their holiday without us- they need us even more than most kids need their parents.  But rewind- we hadn't realized this yet.  And so we tried to keep up appearances, aka do everything the way we always had, including a long-winded dinner at a restaurant on Christmas Eve, church, and then hosting a big Christmas dinner at our house the next day.  Bad, bad, bad.  I preordered the boys' dinner at the restaurant to ensure it was gluten and dairy free, and the food was brought out basically right away when we got there- noone in the family ordered for an hour after that.  Result- meltdowns from both kids, picture Jack falling out of his chair multiple times, hands over ears, crying/yelling about all of the noises, Nathan banging his head on the table.  I carried him into the next room and put him down thinking maybe if he could walk around....he proceeded to lie down on the floor and bang his head some more.  We tried, we really really did.  The pressure was just too overwhelming- we left before dinner was served, we skipped church.  We went home and we both cried.  For our family, for the fact that we could no longer have a dinner out, for the feeling that no one in our families really understood what we were going through.

You would think that after this we would cry uncle for Christmas day.  But no, we pushed on.  We had a lovely Christmas morning, even had fun doing some of the cooking.  I will not even attempt to describe the rest of the day, so I will just say that it was one of the worst days I can remember- and a definite low point for our family.  I didn't feel like we could carry on at all after that point.

Yet here we are- stronger than ever.  We definitely learn something from every experience in our lives.  Well here is what I took from this- sometimes pretending is not ok, it's not the right thing to do.  There is no way to "protect" our extended families from our "new normal".  We can't do the same things anymore.  And to say that we were doing it for the kids is crap.  They certainly weren't enjoying the restaurant, they didn't give a hoot about a standing rib roast.  They would be happy with grilled cheese and chips.  Our marriage counselor described last year so concisely this evening.  He said that last year, we were like the violin players on the Titanic, who continued to play as the ship sank to give the other passengers a sense of comfort/normalcy.  It was torture for us, and did it help our families?  Not at all.  I am sure the violin playing did nothing for the passengers as they fell to their deaths either.  Did those violin players die?  Umm, pretty sure, yes.  So it didn't really work out for them either.  Sometimes, you just have to jump ship.  Circumstances change- accepting this is often the hardest thing to do.  

Accept it we have.  We are shaking things up this year big time.  We are having a Christmas that our family will enjoy- most importantly, one that will be good for the kids.  We are focusing on the progress and growth in our family- and we are acknowledging that what was good for us a few years ago is no longer ok.  We are being "us". 

Long story short, we weren’t ready to stay home.  Or at least, my husband and I weren’t.  It’s amazing how being in a setting where trauma has occurred can affect you.  Nothing bad happened, but I had extreme anxiety and depression throughout December.  It was almost immobilizing. 

I guess the positive is that nothing happened.  We made it through the day with no adverse events.  Other than the typical autism meltdowns, which would have happened no matter where we were.  I was in tears for quite a bit of the morning and just very shaky, went upstairs to try to calm down, and John followed me up the stairs and handed me a mimosa.  I am NOT a drinker.  But there are certain times in life--- well, let’s just say it helped.  It made the day more tolerable.   And I love him for knowing what I needed at that moment. 

We cooked a low key dinner, both sets of grandparents visited briefly, we played with new toys, and generally just spent quality time together.  I am not ready to entertain again- I am not sure I ever will be.  And I am not sure that we will try to stay home again next year.  I had no idea that I/we would feel this badly.  BUT we made it.  The boys had a good day- we had a delicious meal, and I know that all the grandparents were very happy to see the kids on Christmas day.  We still kept boundaries intact to protect our little bubble, but we didn’t have to shut everyone out to do it.  I guess we call that progress. 

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.

The Fabric of An Autism Family- Quite the Intricate Weave

The other day, I was talking to John about taking the kids somewhere.  Let me rephrase that.  I brought the idea of taking the kids somewhere to John’s attention and didn't need to wait for an answer.  Just a minor shift of facial expression is all it takes anymore.  I can read what my husband is thinking and feeling via maybe 2 words of a text, by looking at his face, by the tone with which he says hello, by how long it takes him to come into the house when he gets home at night, by how many times he hits the snooze button in the morning, and most importantly by the way he looks at me. 

This does not happen overnight in any relationship.  It is a dance and ours is still in the choreography phase as we speak.  I guess that could be said for everyone right?  BUT, we have a dance, we are good at it, and we are fine tuning our steps daily. 

I want to talk about how this “dance” is affected by having children with autism.  When our boys were first diagnosed (within 6 months of each other), all we could ever see in each other’s eyes was distress, fear, anger, sadness.  It felt like our relationship was freeze framed in this way.  How can you read your partner when they are continuously grieving?  The pain was all I could see in his eyes and I am sure the same was reflected in mine.  During this time, there was really no way to move forward in our marriage.  We had to deal with an issue so huge, so life changing that we were literally paralyzed emotionally.  We were both so vulnerable and yet closed off from each other.  I say this not to evoke sympathy, or even to explain OUR lives, but to inform those who may have relatives going through something like this now.  You cannot get an accurate picture of a relationship as a whole when two people are devastated, when they have been through something that can most accurately be described as trauma.  

But this is not the point either.

The point is our communication now.  How our dance has changed over the past several years.  If other couples learn to communicate in the ways I mentioned above, couples with special needs children are all but telepathic in their communication.  In an instant, if we look at each other and see a certain glint in each other’s eyes, we will grab our kids and haul ass out of a store, restaurant, museum etc.  We have a whole new set of communication techniques now.  Before, if one of our children was melting down, we were both frozen, because it was traumatic for us.  I mean, who reacts appropriately the first time their kid starts banging their head on the floor in a restaurant?  If you think you would, listen closely, did you hear it?  Golf clap.  Because it’s bullshit.  It’s a learning curve, one in addition to the one that comes with parenting.  And for us, you can throw into the mix that we have two boys on the spectrum and completely different things set each of our children off.  It makes it all but impossible for all of us to go anywhere.

John, poor guy, resists family outings with everything he has.  So last weekend, I convinced him on a 60 degree day to go to Chick Fil A then the park to play.  Seriously we were sitting in Chick Fil A for less than 10 minutes when Nathan started gagging- with what may have been a relapse of his stomach flu or a reaction to one of his medications (sorry Jo :-) ). I didn't want to look John in the eye, I knew I wouldn't like what I was going to see.   And it wouldn't  have even been “time to go”.  It would have been “aha, now you remember why I don’t like to go out with both kids at once, and why we always go through the drive thru.  Now you remember that it NEVER ends well.  Now you remember why I offer to stay home with a kid pretty much every weekend while you take the other one out alone.”  One look.  Dude, I kept my eyes to the ground, lol.  

Without looking we both knew it was time to run anyway.  But no one got upset.  Just another day.  I am trying to figure out how to phrase my point.  I guess I am trying to say that there are many learning curves in life.  There is a continuous one in a marriage or committed relationship.  And another continuous one that comes with being a parent.  And then there is (what feels like) the Mount Everest of being a parent to two children with  autism.  It doesn’t matter how in shape you may think you are at the beginning of the climb, you’re gonna suck at it, I can guarantee it.  At least in the beginning.  All of the rules others have taught you, or that you have learned along the way go out the window.  For me and John, there is often no time to talk, to communicate about our kids’ behavior or needs.  We need to be able to grab them and run- together.  We need to be able to say no to negative situations, together; often without having time to consult with each other.  We need to be able to poke each other in the middle of the night for the rest of our lives and have faith that we will help each other, even if it means cleaning poop off the walls- again.  When I call John at work to tell him that when I told Nate to “touch bird” in a book he touched both of them instead of just one, John needs to know that he should freak out and be excited- for the rest of his life.  Even if it’s the only progress I ever report ever again.  Because we are an autism family, and every single step matters, even if it’s more like climbing a stairmaster (getting nowhere) most days. 

We are learning this new dance, over time.  All autism families are.  But I’m not going to lie to you, it quite often sucks.  We are in a completely different ballroom from typical families.  The music is quieter so as not to hurt our children's ears, the lights are dimmed so that they aren't too stimulating.  And we really have to watch the tempo or we may totally mess with one of our kids' vestibular systems.  Did we understand all of these little innuendo's several years ago?  Of course not!  We thought the disco would be just fine, that the strobe lights wouldn't cause issues, that the crowds would be fun.  Now we know better.  Our familial relationships have to adjust to suit these needs yes, but more importantly, we have had to learn a whole new marital dance.  The good news is that even if your partner is stomping all over your feet and dropping you at the beginning of the journey, if you just hold on, you WILL get the hang of it.

Autism Causes and Blaming Moms

This morning I was sitting upstairs while John was getting dressed for work and we had the news on.  All of the sudden we hear the newscaster say something about a report that could potentially “erase autism”.  We looked at each other like huh?  I proceeded to stay glued to the screen for as long as possible and never heard a word on the Today show about it.  So I decided to Google it.

Big mistake. Have you tried googling the following lately?

Autism, causes

Autism, news,

Autism, pregnancy

First of all, it’s depressing.  Second of all, wow.  The number of theories out there is staggering; the thing that is most obvious is that really no one knows.  Thank goodness the idea of it being mom’s fault for being a “refrigerator mom” aka, unaffectionate, inattentive, etc. has been thrown out the window.   However, here is what is disturbing me- the number of results I found when I googled autism, pregnancy.

.

Brain changes that relate to autism begin in the womb

http://www.usatoday.com/story/news/nation/2013/08/12/autism-labor-induction/2641391/

Eating healthy fats during pregnancy may reduce the risk of autism

http://news.yahoo.com/eating-healthy-fats-during-pregnancy-may-reduce-babys-140717291.html

Antibodies during pregnancy linked to autism

http://www.futurity.org/health-medicine/antibodies-during-pregnancy-linked-to-autism/

Induced labor linked to raised risk of autism:

http://www.webmd.com/baby/news/20130812/induced-labor-linked-to-raised-risk-of-autism-study-suggests

Mom’s health during pregnancy correlated to autism risk:

http://www.webmd.com/brain/autism/news/20120409/moms-health-while-pregnant-linked-autism-risk

Flu/fever in pregnancy linked with autism risk:

http://www.nbcnews.com/health/flu-fever-linked-autism-pregnancy-study-1C7002572

Major stress during pregnancy linked to autism:

http://mentalhealth.about.com/library/sci/1101/blpregnant1101.htm

Lack of folic acid in pregnancy linked with autism:

http://www.npr.org/blogs/health/2013/02/25/171828067/folic-acid-for-pregnant-mothers-cuts-kids-autism-risk

Study links autism with antidepressant use during pregnancy:

http://parenting.blogs.nytimes.com/2013/04/22/study-links-autism-with-antidepressant-use-during-pregnancy/?_r=0

Air pollution exposure during pregnancy linked to autism:

http://www.cbsnews.com/8301-204_162-57589905/air-pollution-exposure-while-pregnant-linked-to-autism-risk/

Are ultrasounds during pregnancy causing autism?

http://www.thedailybeast.com/witw/articles/2013/04/29/are-ultrasounds-causing-autism-in-unborn-babies.html

Could the timing between pregnancies raise a child’s risk of autism?

http://www.babble.com/baby/autism-guide-spectrum-disorders-pdd-asd/autism-guide-causes-theories-vaccines/

Mom’s pregnancy weight may increase risk of autism:

http://www.foxnews.com/health/2012/04/06/moms-pregnancy-weight-may-increase-risk-autism-developmental-disorders/

Thyroid functioning during pregnancy linked to autism:

http://www.examiner.com/article/thyroid-functioning-pregnant-women-linked-to-autism

Valproate used during pregnancy linked to increased autism risk:

http://www.pharmawatchdog.com/valproate-pregnancy-linked-autism

Wow is right.  I included all of these links lest you thought I was exaggerating.  The refrigerator mom theory may be out, but that doesn’t mean that mom’s today don’t feel as though they are blamed for their children’s challenges.  We all have an innate sense of guilt about this to begin with, so do autism dads.  We all wonder “what did we do wrong?”  And as you can see, all we have to do is consult Google to find out that we did everything wrong, right.

Well let’s review my personal history: both times I was pregnant, I was not obese, I did not have diabetes or hypertension, I took folic acid, my thyroid results were fine, I did not take valproate, I did not have extra ultrasounds, my kids were almost 3 years apart, I didn’t have the flu or a fever, although I did have a stomach bug.  Neither of my labors were induced, in fact, no Pitocin actually entered my body during either delivery, nor did I even have an epidural with my second labor.  I did take an antidepressant, but I switched to the one that is considered “safe” in pregnancy.

That doesn’t change the fact that I still feel guilty about it. Maybe that’s it.  Maybe I caused this.  This still enters my mind, even though there are significant genetic correlations in both my family and John’s, which we were not even aware of when our boys were born.  I can still find a way to blame myself. 

If I could reason with journalists and medical agencies who are releasing this “information”, I would say that by making these likely insignificant “correlations” public, they are making many mothers feel like bad parents.  Mothers who actually need and deserve the exact opposite.  I understand that everyone is searching for answers; I understand that everyone wants to be “the one” who figures this out.  But ouch, is this hurtful.

Here is the most credible resource I have found:

http://imperfectmommy.com/blog/2013/08/16/having-a-child-increases-your-chances-of-having-a-child-with-autism/

Absolutely love this.  I never did figure out what the “autism eraser” is.  Guess I’ll have to stay tuned.  Maybe I should have avoided drinking water?

What Do I Deserve?

What do I deserve?  As an autism mom, a wife, a working woman?  That is such a difficult question.  I am accustomed to putting my needs last, to funneling all available resources toward the needs of the kids.  Many parents feel this way, it’s just that in our case the needs are greater, and well, more expensive.  So I have tried to become ok with the status quo- the clothing I already own, the furniture we have always had, haircuts every 6 months or so, and reading the same books over, and over, and over.  And usually that’s just fine.

There has been one area of my home where I was unable to do this- the dining room.  To me, a family’s eating area is super important- it’s the place where the family gathers every day, the place where I often work after the kids come home in the afternoon, and the place where I work with Jack on his fine motor tasks.  And our dining set was on its last legs.  We bought our set as an antique about 9 years ago when we were very first married.  Even then, I didn’t like it.  But it was in good shape, it was a full set, and frankly, it was cheap.  I figured that we wouldn’t eat on that table much anyway once we bought another home- that we would eat in the kitchen.  That didn’t happen- and in the past 9 years, this “antique” has endured quite a lot of abuse at the hands of the entire family.  The chairs have been “tightened” and wood-glued back together countless times, I have recovered the stained seats, and Nate even knocked one chair down and broke it at one point.  I hated my dining room- to the point that when John and I were having marital problems my only slightly happy thought about a potential separation was that maybe he would take the hideous dining set.  Pretty sad, huh?  The breaking point came when we had company a few weeks ago.  I was setting up the table for the meal and found myself arranging the chairs strategically so that John and I would be sitting in the ones most likely to fall apart during the meal.  I didn’t want my guests falling.  Clearly it was time to make a change. 

Obviously we do not have bunches of money lying around to purchase new furniture.  It was more of a pipe dream.  But I would peruse craigslist on a regular basis looking at used furniture and daydreaming.  I always wanted a round table- that’s what I grew up with.  I was used to my feet resting on the pedestal; I had “fond” memories of me yelling at my mother as she quizzed me before a test (at our table) that she was “doing it wrong” when I couldn’t answer a question (ha).  It just felt like home to me.  So after looking for about 6 months, I finally saw a table and chair set that looked just right- and at a very reasonable price.  It was also high quality- Ethan Allen (also what I grew up with).  I broached the subject with John and after much discussion, he told me to go for it.  And I did, and brought the chairs home.  While I was there I saw the most beautiful china cabinet in the owner’s home.  I had seen it once before when I liked another set, but the set was white, and there was no way it would work in our home.  The owner agreed to sell it to me, for a price that in no way could I rationalize.  I felt like a petulant child- but I waaaaaant it!!!!  Perhaps that’s why I went back to my childhood technique for getting something I wanted- working for it.  My parents handed very little to me when I was a child- I worked for what I had.  If I wanted trendy clothes in high school, I had to use my own money; same went if I wanted a car.  When I was in third grade, I shoveled driveways for 2 days straight to earn the money to buy a cabbage patch preemie doll.  Loved that doll more than any of my others.  So I formulated a plan- I had already decided the table and chairs were worth it to our family- for safety purposes if nothing else.  The china cabinet- I couldn’t really justify it.  I can’t work overtime because my job is salary.  But….I could sell things.  Clear clutter and make some money at the same time.  So I set about doing just that.  In the span of a week, I sold our old dining room set, an old washer and dryer that were sitting in our garage, the elliptical I never use because I run now, the double stroller, and the play kitchen.  In the end, I earned all of the money needed for the china cabinet.  The gracious seller's husband helped me move it and the table- which was no small feat.  And now when I walk into our dining room I feel complete and utter peace.  It is exactly as I always pictured it- and I avoided the all too common guilt I experience when I do anything for myself.  I earned this.  And I love it as much as I did that cabbage patch doll.

What does this have to do with autism?  Well any autism or special needs parent could answer that in a heartbeat.  Once your child is diagnosed with special needs, it becomes difficult to ever picture doing anything for yourself again.  In general, I would be willing to sit on those rickety chairs for a lifetime if I knew that money could go towards an effective treatment for the boys.  But if I give every single ounce of everything that I have to my sons, no matter what the outcome, how am I treating myself?  I work hard every day, both at my job and with the boys.  At some point, I have to allow myself to have something too.  Something that makes me smile every single day, something tangible.  It makes it easier for me to handle the fact that Nathan started playing peekaboo with me for the first time in two years this weekend- and that this is huge progress (he’s almost four years old).  It helps me deal with the fact that Jack is going through yet another resurgence of his airplane obsession, accompanied by 5 to 6 daily meltdowns when he can’t find one, or something breaks, or I tell him he can’t keep his Lego plane in his bed while he sleeps (for obvious reasons).  There is that little voice in the back of my head screaming mitochondrial cocktail!!!!  Today I am telling that little voice to shut up.  Yes, so far every compounding pharmacy has quoted me $250 a month or more to make this for Nathan.  I am not going to do it.  Unless by some lark the insurance will cover it, or the pharmacist can omit one or two ingredients that will make it affordable (I can give one or two supplements the old fashioned, hiding in the juice way, just not 12).  If neither of these tactics is effective, then I am just going to have to think harder about how to hide all of these powders in food and drink.  Because frankly, I have spent every spare penny on supplements, and special diets for over two years now with very little progress.  I am not giving up on supplementing or on progress in general, but I have decided to slow my efforts to a more livable pace.  I didn’t stop buying the boys toys or clothing when the autism diagnosis came, and my husband didn’t stop his interests and hobbies, but when I look in the mirror I realize that in many ways, everything stopped for me.  To a certain extent, that’s ok, but I can’t sustain it forever.  So now I have my china cabinet.  And even though I ended up paying “nothing” for it after all that I sold this week, it was still a gift that I gave to myself.  Not only something that I earned, but something that I deserve.   

Life has to continue.  I can’t stop living, or ignore my wants and needs forever because of my children’s special needs.  I don’t have to choose, I can take care of them, John, and myself. 

Worth every penny! 

The World Didn't End

I was snuggling with Mr. Natey this morning before he got on the bus.  I have been particularly tough on him recently- he is showing a little more awareness and I am trying to take advantage of every moment of it.  I had him in his little learning chair (baby jail) for almost an hour last night practicing sorting, reading him books, stacking, yada yada.  I wouldn't let him out until he said done.  Things like that.  Trying to get him to use his words is torture for all of us.  It doesn't help that all of his favorite things seem to start with C, which I think I have mentioned before- chip, cup, cookie.  He did say cook for cookie this weekend so that was good.  It just stinks that they all kind of sound the same- we're never completely sure he's saying something new, or understanding.  I am back to working on body parts with him again- something that he was still doing at this time two years ago- he pointed to his nose, eyes and head at his 18 month checkup.  Anyway, as I was looking at him all I could think was, I can't believe we're here. 

Nathan is 3 and a half years old.  This is the age that Jack was when he was diagnosed with Aspergers.  When after years of feeling alone, feeling like people thought I was "overreacting" to some very concerning behaviors, I mentioned my concerns to his 3 year old preschool teacher.  She said "thank God, I have been waiting for you to bring it up!!"  That was when I called child find- where they wouldn't diagnose him, but told me that he had such and such deficits in these areas, then said, these types of deficits often point to autism.  I want to emphasize this to any parents going through, or about to go through the evaluation process with their child.  Do NOT go alone.  I did, and it was a huge mistake.  Take someone with you, someone to entertain your child while you have your nervous breakdown.  A visit to a developmental pediatrician (a "traditional" one) took about 4-5 months to procure and when we did so, he was officially diagnosed.  I once again went alone to this appointment- if I'm being honest, I was facing these issues on my own at the time- it was really tough for daddy to accept.  I still thank God everyday that he got there. 

At the time, I felt as though my whole world was crumbling.  I thought, ok, this is our "thing".  The bad "thing" that every family has to face and work through.  Little did I know that this was actually our preparation for a much bigger "thing", Nate's autism.  First God gave us our child with motor and sensory issues, obsessions, extreme emotions, ADHD and copious speech.  It may have been tough, but at least he could communicate, and interact.  Then he gave us our Nathan, who seemed blessedly neurotypical, and then snatched that away (or at least that is how it has always felt).  We watched him speak, then stop.  We watched him play with toys, then stop.  We watched him respond to his name, then stop.  We watched him point to things, then stop.  It was excruciating, and it happened about 7-8 months after Jack was first diagnosed.  Talk about your double whammy.

I just can't believe, when I look at Nate today, that he is the age that Jack was when this all started.  He is wearing the same clothes, but that is where the similarities end.  If I had known what we would face with Nathan, maybe Jack's issues would have been a bit easier to swallow?  I say that, but I honestly don't think so.  No parent wants to see their child struggle in any way.  I guess the bottom line is that we are making it.  It felt like the world was ending when all of this happened, but it didn't.  We just got stronger.  Below are some pictures of first Jack, then Nate at 3 and a half.

I Choose Grace

Over the past several years I have started to develop a thicker skin.  I used to cry, all the time.  If a family member was mad at me, even if I had done nothing wrong I would sometimes cry for days.  When I felt judged, I would cry.  I have always been a very sensitive person, I get very upset when I feel rejected or when I fear I have offended someone.  And while this type of empathy and awareness can be a good thing to a certain extent, and is frankly something lacking in many, I think that it can also be a burden, and it can be completely exhausting.  Because when you worry so much about what others think, you allow them to literally drain your energy.  For me it was like opening a valve.  In the past, when there was conflict, I would be incapacitated by my emotions.  What did I do wrong?  Why don't they like me?  And the biggest and most self-damaging one- how can I fix it?

The crux of the situation is that everyone has their own issues and their own past.  Whether they were raised to be empathetic or judgemental, or to value only physical appearances; whether they were raised to believe that family members/friends are forever, even in the face of adversity, or that these ties can be severed as effortlessly as brushing a piece of lint off of one's jacket.  Whether they surround those in need, in crisis, with love and support or avoid them.  This cannot be fixed, and attempting to do so will only result in more negative feelings. 

This is something all too familiar to so many special needs families out there.  I hear about it from a friend or acquaintance almost weekly.  A rejection or hurt at the hands of a friend or family member.  A lack of acknowledgement or empathy.  Refusal to see that many global family problems- marital tension, unwillingness to attend social events, inability to contribute in the same ways as one has in the past- are truly a part of a much larger issue- autism. 

I used to feel the need to explain to those who did not have this insight.  To try and "help" them to understand what we were going through or where we were coming from.  The act of doing this was literally worse than beating my head against a wall.  Some people are unable to, or do not want to see.  Some people don't understand the issues that autism brings.  Such as the need to keep things low key, family events tame, parties small, and vacations quiet.  Or the exhaustion that parents of children with autism continuously feel- both emotionally and physically.  It is not a lack of "zest for life", or laziness, or even depression.  This is a reality for many families. 

All of this is very frustrating from my side of the fence.  I want to shake people and say, why can't you see?  Why can't you just be there- unconditionally?  I suppose I could spend my time worrying about this, and end up hurting myself.  But instead- I choose grace.  I choose to smile, I choose to allow my problems and my family's problems to be seen.  I do my best to allow the judgement to roll off, knowing that I am making the best choices I can for my family.  I choose to hold my head up high and love those that cannot love me and my family for who and what we have become and need to be.  I can pray to God that my grace will rub off on those who need it.  But now I can also accept that this will not always happen- that there will be many many times when the gesture will remain one sided.  I can accept that my grace allows me to enjoy my life, to feel fulfilled.  And that I am setting a good example for my children.

Accomplishments Only An Autism Parent Could Love.....

Us Autism parents develop crackhead senses of humor, it's just necessity.  The "new normal" is not just a catch phrase, it is truly a way of life, and let me tell you, as an autism parent, if you don't find your way to this place, you're gonna be pretty miserable.  Normal developmental milestones just don't apply, so you kind of create your own.  We have had a few lately that have been particularly ridiculous so I thought I would share here...
Here are some things that John and I are proud of that may make you shake your head...

1.  Jack is obsessed with hunting and guns right now.  The gun thing drives us both crazy- and he doesn't even own any!  However he turns sticks, golf clubs, mechanical robot arms, and large bubble wands into guns- he also made me build a robot gun out of his gears set this past weekend- this is amazing pretend play, so whoohoo!!!

2.  Nathan is developing a very jealous/possessive streak when it comes to mama.  Jack cannot sit on the opposite end of the couch from me without Nathan screaming because he doesn't want him that close to me.  He walks over and smacks him.  On the plus side- they are interacting!!!!! AND- Nate is communicating!

3.  I mentioned the potty training debacle with Nathan the other night, the fact that he umm, pooped on the floor.  John was downstairs while this was going on and all he heard was cheering.  He knew we were trying the potty and he came running upstairs to celebrate the success, so you can imagine his surprise when he walked into a poop filled room.  He looked at me like, umm, WHAT are you cheering about???  The answer- some pee got in the potty AND he didn't smear the poop!

4.  John and I were outside the other night when John looked up and saw Nathan in our bedroom window.  Which is over our bed.  And this was after bedtime.  He was standing there pouring water from my water glass onto my pillow.  We were tickled pink.  Hey, he opened the door all by himself!  We love ALL developmental milestones around here!

5.  Jack came home from being out with a family member who gave him contraband ice cream the other night (he is still dairy free).  He puked in the bathtub- thank God; because after he got rid of the dairy we avoided the usual resulting hyperactivity and he slept through the night.

6. I am secretly thrilled every time Nathan throws a temper tantrum- he knows what he wants, and he is passionate enough about it to make his feelings really well known.  We are ecstatic with any and all communication attempts, even if they involve him screaming hysterically, throwing himself on the ground and yelling "bad, bad, bad" for good measure

And now some visual accomplishments:

7.  They are sitting near each other- and Jack isn't trying to sit on him; and Nate isn't hitting Jack! All parents can appreciate this to some extent, however, in my boys' case, this has happened maybe 4 times- like, ever

8.  Jack saw this crab on his school field trip.  He was able to walk away from it without having a meltdown.  He told every single person he saw for the rest of the day ALL about it, but he did not have a meltdown.  I cannot state more emphatically how huge this was for Jack.  Score!

9.  This one serves a double duty- he let me cut his hair.  AND he's looking at the camera!!!!  Huge accomplishment for a kiddo with autism on both counts.

10.  Nate uses an app called "choice board" on the IPAD.  He is now choosing several items correctly when he wants them (he touches them, they enlarge on the screen, he touches them again and my voice says the word- that's his way of asking for something- and food is the main motivator for him)

Is it all complete and utter CRAP??? Absofreakinglutely!  Do I care?  If he asks appropriately for these things?  Nope.  That's right, I will let my kid eaten gluten and dairy free JUNK if he communicates with me.  Hearing my own voice say "chip" is music to my ears. 

The funniest part of all of this to me is that these sound like perfectly normal things to be proud of now.  The first time Jack smeared poop when he was a little over 2 years old I thought I would DIE.  Now if Nate does it, I sigh, grab the lysol wipes and investigate just how far he got in the process without missing a beat.  John's job is to toss him in the shower and squirt soap in his general vicinity.  Hey, it's teamwork.

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. 

Took Longer Than I Thought

For me to burst into tears after today's assessments.  We did this study for the greater good- to benefit autism research.  There was no "personal" benefit for our family other than some financial compensation, which, while nice, was not reason enough to endure the things we have throughout the SEED study.  I have been at it for about a year now with this study.  I have done about 4 phone interviews and filled out countless surveys and sent them in.  Today was the final step- assessments for Nathan and lab work for him, me and John.  The lab work was the least painful part to be completely honest. 

There were about 2 hours of assessments for Nate and about 3 hours of "interviews" for mommy.  Daddy stayed with Nate during the assessments, so I don't know for sure how he was acting while they were trying to work with him.  It seems that he had a very stimmy day and they couldn't get much out of him.  This isn't really surprising- most kids don't perform to their potential in unfamiliar environments, and this is especially true when the child has autism.  And these people, never having met Nate, do not know his particular "catch phrases" (things that get his attention) or the best way to approach things with them.  I am beginning to realize that standardized testing in children on the spectrum is a joke.  Isn't the whole point that it's a spectrum and that these kids do not respond in typical ways?  The typical testing isn't going to show what Nate can do.  Or that's what I tell myself, and what I need to believe, especially today.

The interview was BRUTAL.  I mean, "does Nate look at you when you walk in the room?" "how about other people he knows?" "how about strangers"  "how about when he was 16 months old?".  That is just a BRIEF sampling.  For three hours.  Does he jump?  Does he hop?  How is his gait when he runs?  Does he hold a spoon "appropriately?"  Well the food almost always ends up in his mouth.  Almost every social and developmental scenario you can think of was addressed.  My brain literally hurt when it was over.  And also, I was extremely depressed.

When they reviewed the results, we got the same sympathetic look as always before the examiner started.  I even told her, "hey it's ok, we're used to this by now."  Think again.  They assessed that Nate has regressed by 4 months since his last assessment 6 months ago.  I'm sorry, but I really don't think so.  I mean, I don't THINK so.  Then I start second guessing myself.  Is he doing worse?  Because saying he regressed 4 months in the last 6 actually indicates 10 months of loss if you see where I am going with that.  Because he should have gained 6 months in 6 months right?  But if they are saying he lost 4.....

I called my mommy- what else is a girl to do? She called bull pucky.  And I think I agree.  I think that the testing environment severely affects a child with autism, as does the identity of the tester.  I think that his teachers in his school know better when to persevere and when he truly can't do something.  And I need to try and keep that in mind.  This just left a really bad taste in my mouth....

The greater good is great, but our good is important too.  I am taking a break from "extra" assessments for my kids for awhile unless there is some true benefit for them- like therapy or a medicine.  This whole, "yep, your kid still has moderate to severe autism" thing really wears on you, you know? 

A Year Wiser....

This weekend is a very very special anniversary for John and me. In some ways, even more important than our wedding anniversary.  This weekend it's been a year since we began our Retrouvaille journey.  See this post for a refresher:
http://www.blogger.com/blogger.g?blogID=5362113364349699326#editor/target=post;postID=7193241725232425701

What a year it has been!  I am so proud of us!  I am so proud of our family.  And I know that we are both in it for the long haul. 

We are going away today for the first time since we had children, just the two of us.  Unless you count our Retrouvaille weekend, and we do not.  Thank you mom and dad for watching the boys.  It's only one night, and we are going to the TACA conference, but hey, away is away.  Meals without kids are meals without kids.  A full night's sleep is- well, it's heaven.  And the craziest thing is that this conference is taking place in the exact same town in Pennsylvania where our Retrouvaille weekend was held.  Malvern!!!  Not even that big of a town! 

We have learned so much about the true meaning of love, and real commitment.  We know each other in a way that we never did before this experience- and maybe that's what it's all about.  You can let a crisis in a marriage and family be the end or you can take it, recenter yourselves, learn from the situation, and bam, you may just find yourselves at a whole new level in your relationship.  Totally. worth. it.

I stand by this, now more than ever

How About Action??

Here we are again- Autism Awareness Month, and more specifically today is the "day".  I feel much much differently about it than I did last year.  I feel much more like a "down in the trenches" autism mom, more seasoned, more "aware".  Aware of the kids' needs, the costs involved, and the barriers involved.  Our family has been through it, learned more than we ever could have imagined, and adopted a very different way of living in order to accommodate our kiddos.  Bottom line- WE REALLY GET IT.  And because of this, I am no longer content to "celebrate" World Autism Awareness Day.

Don't get me wrong, it's very important for society to acknowledge this growing (exploding) trend of autism diagnoses.  I am glad that any type of Autism Awareness Day exists.  It's just not enough.  I mean, light everything up blue (pretty), buy jewelry and t-shirts (especially do that since some of the money likely goes to research), but don't stop there.  Here are some really very minor ways you can actually contribute to the cause:
http://www.tacanow.org/ways-to-help/autism-awareness/

I am a big fan of TACA.  Talk about Curing Autism.  I think some people hear this and assume that they think autism is like the plague, something to be eradicated.  But as I have been to more and more meetings I have come to see that the goal (right now) is to find ways to alleviate the symptoms that disturb our children, to help them succeed to the best of their abilities without their sensory or attention or communication issues getting in the way.  And yes, it does involve medical intervention.  And behavioral intervention.  This organization also provides invaluable resources for parents, such as information on any tax benefits available to parents of autistic children (not many) or a full list of brand names of items that are gluten and casein free, or a comprehensive list of providers all over the country.  And support, which is of course, huge. 

TACA is calling this Autism Action Month, and I am on board with that.  We all need to take action- to spread awareness, to show acceptance and to raise funds for treatments, as families are weighed down tremendously by the financial implications of having a child with autism.  Or two.  What are we doing as a family for Autism Action Month?  Well, we raise awareness every time we go out in public.  But John and I are attending an autism conference in Pennsylvania this weekend.  We are educating ourselves on the best ways to help our boys.  And we will continue to attend TACA meetings, and to befriend other autism parents.  And for me, one of my biggest actions is this blog.  Anyone who reads my blog regularly and truly listens has become, by default, autism aware.  Now, I am challenging you to take action- donate, walk in a walk, or run in a run, or simply invite an autistic child over to play (mom can stay :-)).  You have no idea how much that would mean to the child and especially to the parent.  Acceptance isn't just about refraining from scowling when an autistic child has a meltdown in public (although that's a great start), it's about welcoming individuals with autism into your lives.

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. 

 

A Great Way to End the Week!!!!

This afternoon I received an email from Jack's teacher entitled "today".  I have received many such emails by this point in the year, similarly titled.  The body usually contains "Jack fell asleep twice", "Jack refused to...." or "Jack broke....".  So ok, my heart sank just a little.  Imagine my surprise and delight when this is what it said:

We had a celebration in our reading group today because Jack wrote the words "do" and "this"  completely by himself on a white board with a dry erase marker!!!! Whooohooo! :))))


Well halleluiah!!!  Not only is it not bad news, it's really great news!  Today marks one week since I started doing "alternative homework" with Jack on the IPAD, which is all fine motor work for about 30 minutes a night.  It's a bit easier to write on the ipad (you don't have to press down as hard) and it sure gives you a heck of a lot of encouragement in the form of cheers, confetti, funny scenes to watch, etc.  I don' think this little success story is a coincidence.  And it's such a testament to what a great teacher he has- how encouraging she is. 

So how does one celebrate with two gluten and dairy free children?  Chick Fil-A of course!  And thrill of thrills we went "in" the restaurant, something Jack is always begging for and mommy almost never does.  Just a heads up for any other mommies that have their hands full.  If you go pretty early the cashier will come to your table if you are by yourself with little kids, take your order like at a sit down restaurant and bring the food out.  At least at the one we went to tonight.  Nice!!  The boys had a blast in the little play area.  Nate really just ran laps and laughed, but he was really happy.  Jack was playing well with the other kids, which was really nice to see...

Here's hoping the trend continues all weekend!