Great Expectations

When you have your first baby you plan and plan and plan- or so you think. You will do everything "right" and your child's life will be ideal.  Cue reality.

Our reality has been a huge wake up call.  In the beginning it was really hard for me to adjust my expectations.  Jack started out so "advanced" with so many things that when I started to realize he was behind in other areas it was really difficult to stomach.  Add into that my rule follower, high achiever roots- yeah it was a challenge for this mama.

Things that have happened over the past month or so- things that have made my heart SO HAPPY, have made me realize just how far I have come.  

Jack started out on a rough path at his new school.  Weeks of behavioral spikes, refusing to do work, not getting along with peers.  It was terrifying- the constant calls from school- it got to the point where every time they called I thought they were going to ask me to come pick him up (they never did).  Even the bus driver was having issues with him.

What a turn around we have seen.  I guess my appreciation for this can go back to my last post about Nate- it took going through this darker period for me to appreciate the positives that are coming our way now.  

He is bringing home countless COMPLETE and CORRECT assignments.  Up on the fridge those bad boys go- he has never had this experience of consistent success in school before.  If it makes me feel this good I can only imagine what it is doing for his confidence level.  

Doing homework with him has become a completely different experience.  He may complain about it intermittently but compared to the past- when I would be constantly asking him just to look at the paper, it is a cake walk.  And he writes it!! Can't even begin to explain what that is like- he used to limply hold his pencil in his hand and tell me he was not capable of doing it.  

Then this week he had his third grade musical, "science rocks".  I thought they would stand up there and sing a couple of songs- 45 minutes into it I realized this was much more involved than that.  This type of event has always been a land mine for my firstborn.  The noise, the crowds, the expectation to stand still and follow directions.  The APPLAUSE.  Just the clapping alone used to send him into a tailspin and inevitable meltdown.  His dad and I were basically gripping our chairs at the beginning and praying (that he would do ok and that it would end- soon).  My son.  My sweet boy.  Made it the entire way through, and made an effort to sing every single song with a smile on his face.  Did he get the (very involved I might add) hand motions correct?  Not on your life!  Did he have periods where he couldn't stop giggling and the proper little girl standing next to him (she reminded me of myself when I was their age) was constantly jabbing him and telling him to simmer down?  100%.  For the first time in my life as a mom- I didn't worry- I actually wanted to tell the little girl to chill out- kind of symbolic I'm thinking 😜.  He even made it through the science fair awards and the once again constant applause.

I imagine most of the parents who attended this adorable show went and thought it was cute and enjoyed it.  I ended the successful evening in tears because I couldn't believe what my baby had achieved.  

When Your Child Is Special

While I am a special needs mom, that's not what I mean today.

I am talking about how special my Nate is- what an amazing little individual I have in my life.  I was sitting with him today out at lunch after a particularly successful haircut and I just had to stop myself for a minute and stare.  He is so gorgeous.  Sometimes it feels like every single thing he does has just a little magic involved 

He is just a perfect little soul.

There is an element of this feeling of awe that DOES involve autism.  I am not one of those parents who counts autism as a blessing.  But it did give me a gift.  It gave me the gift of seeing my son "return" to me.  With the absolute devastation that came when he stopped talking to us, stopped looking at us, started banging his head against the walls, came the complete joy of seeing him respond to his name, attempt to say words, jump on his exercise ball rather than engaging in self harm..

Sometimes it really does take losing something to understand just how precious it is.  Jack was an "early talker".  I can still remember a mom in our play group looking at me completely deadpan and saying, "did your 15 month old just say vacuum???  excuse me while I go shoot myself in the head!"  (she's probably cracking up right now).  I was a first time mom, I completely took Jack's speech for granted- I had no idea just how amazing it was.  Honestly, I would've been happy if he would've simmered down for a minute- pretty much all the time.

And Nate started out slower, but developmentally appropriate.  He was still on track when he received his vaccines in June at about 16 months.  I am not trying to blame vaccines, but it was at that visit that he received a standard developmental screening- he was pointing, he had enough words, he was playing with toys.  And then he wasn't.  I guess you can take that however you want.

When your child, who is supposed to be exploding with new developments, loses the skills he has and checks out- there just isn't even a word that encompasses those feelings.  Terror- maybe.  But grief is in that mix, so I guess not.  Let's just say it's life altering.

Anyway, I don't want to relive all of that, but it's kind of crucial to the story.  In regaining skills, starting to explore his world, interacting with those around him, Nate has become my own little personal daily miracle.  Every single thing he does amazes me- and I can read him like very few moms can read their kids.  Because we had to do it without words for YEARS.  It was actually a huge challenge when he started ABA, me withholding things and waiting for the word, because I could literally always see in his eyes what he wanted and needed.  We had developed our own system, and I would have to say I was the only one who could read him like this.

I am starting to be able to share that with others, because he can now go into school and communicate his needs- generally only the very basic ones, but it's such a step up...apparently last week at school, he went to the bathroom while in gym and walked down the hall announcing to everyone "I pee, I pee."  Seeing this little personality that I have always known was there emerge and be noticeable to those around him is just thrilling.  

He has spunk, he has a little attitude, and I'm convinced that his sense of humor is just as sarcastic as his mama's.  The amount of eye rolling that goes on in this house is just hilarious.  His curiousity is starting to really emerge- he will literally move my mouth just to see me talk and watch how I form my words- this is so cool to see...

He is starting to "joke".  He finds himself (and his ability to make others do things) hilarious.  He is beyond loved everywhere he goes- he has his therapists, teachers, and family wrapped around his little finger.

In short, this little boy is my hero.  I am so proud of how far he has come, and I am so hopeful about where he is headed.  I could not have said any of that two years ago.  I was too absorbed in my own grief to realize how many wonderful moments were headed my way.  I am learning, through this child to appreciate the little moments in a way I never understood before.  I have learned that every single step for him is huge, and that he can go way further than I had realized...

I LOVE this boy!!!!  He brightens every single day of my life.  

A Cause Near and Dear to My Heart- Please Read!!

If you are reading this, you either know and care about our family, or are affected by autism in your own daily life.  Either way, you have some personal knowledge about the affects that autism can have on a family.  I talk quite often about the day to day emotional struggles that we face- but the fact of the matter is that financial issues have just as much of an impact.  This is true for pretty much all autism families.  There are few other serious diagnoses out there that have treatments and therapies so significantly limited by a family's personal finances.  If our children had other medical diagnoses, or genetic disorders, they would qualify for services, and likely medicaid rather quickly.  With autism, Maryland has the "autism waiver", which offers a limited number of slots for special services provided to kids with autism- we have been on the wait list for approximately 6 years now.  When we first started on this journey, we felt so limited in what we could provide for these kiddos- our insurance covered 50 therapy visits A YEAR.  OT, PT and speech COMBINED.    We could take them to (in-network) developmental specialists and get them diagnosed 500 times a year (if we were nuts), but the treatments these specialists recommended were completely out of reach for us, and we are a two income family, albeit one with two children in need of services.  

I could spend this entry perseverating about the things we have not been able to do because of lack of funding- there is much that I could say, and have said on this issue.  But that's not where I am going with this.  

There are sources of help, sources of funding out there for our children.  About two years ago, such a source came into our lives and changed things for the better.  We became aware of Avergan Foundation  http://averganfoundation.org/  through the special needs preschool that Nathan was attending.  We were drowning in debt trying to pay for this program that our son needed.  There was of course little to no funding available for this type of program, and the cost of it would quite frankly make your head spin.  When it comes to your children?  Your son who is 3 and non verbal?  That hardly matters.  You want your child to function, to thrive, and will do just about anything to make that happen.

To put this in perspective, here is Nate, at age 5- for weeks this program worked with him on a "wish" his mama had for his 5th birthday.  I wanted him to blow out a candle.  This may sound frivolous to some, but these milestones that we as parents miss out on- they mean so much. 

And here is a mama's wish coming true....

It is true what they say, fighting so hard for these small accomplishments makes them mean even more.  Avergan helped fund Nathan's attendance at this program for nearly a year, while also funding his private speech sessions with a speech therapist who truly understands his needs...

After all they did to help support our family, I found myself volunteering at all of their events, wanting to be involved, wanting to give back.  So recently, in a moment of insanity, I joined the board.  As tied up as I am trying to provide the boys with what they need- at this point, I am proud to say that I think they kind of have it...we are in a good place service-wise.  There are many other families who are not.  And they need help.  They are where I was 5 years ago- and it's not a place anyone should have to stay in!

So here I am, a mama with (another) cause.

Avergan Foundation is having an event called "Art For Autism" on April 23rd to raise money for these families, and we need your help.  If you are an autism mom (or dad), we need your kiddo's art!  If you are a business owner, we need your sponsorship!  And if you are my friend, or family, or care for these children we are working for, we need you to come out to the event.  I will be posting more information as the date gets closer, but here is the link to the event

http://averganfoundation.org/our-events/art-for-autism/


Please consider getting involved in whatever way you can- if I can find time, you can too!!!

And just look at these faces.....

Not trying to sway you, but you know, they are kinda cute ;-)