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 ;-)

Caregiver Burnout is Very Real

About a year ago, my employer, being the forward thinking organization that it is, hosted a teleconference for employees on compassion fatigue and caregiver burnout.  I of course could check almost every symptom box on the list of possibilities.  That being said, I have a very difficult time accepting that I feel this way, and that it’s not necessarily a personality defect.  I have always been a “carer”, and the thought that I essentially have nothing left in the tank and need to tell people I’m full up?  Well, it feels like failure to me. 

http://www.webmd.com/women/caregiver-recognizing-burnout

 

I became a nurse (gulp) 16 years ago.  It was the most natural thing on earth for me.  I studied biochemistry in college and accepted a research internship with a pharmaceutical company.   I did this full time for a semester and by the end was ready to emit a primal scream.  The lab- silent.  The petri dishes- did not answer me!  This particular lab was particularly stifled, not even music was allowed because apparently the researchers could not agree on a genre.  That was all it took for me to know that this was not to be my path in life.  I needed people; I needed to help people directly, not by isolating something under a cell culture hood!  When I returned to school I changed my major, transferred to Hopkins and the rest is history.  I chose oncology, bone marrow transplant as my area of practice.  I loved that they utilized primary nursing and that we functioned in and rotated between the outpatient and inpatient setting and also could transition patients and keep them when they required ICU care.  This resulted in nurses knowing their patients for months, seeing them daily, and unfortunately sometimes seeing them come back again and again for years when they relapsed or had complications.  It was definitely emotionally draining.  It was also incredibly fulfilling.  About seven years in, I needed a change.  I had had a string of wonderful patients pass away and to be honest, I was burnt out.  Also, I think God had a plan for me- I accepted a position as a transplant case manager with an insurance company- and made the eventual possibility of working from home a condition of my employment.

About 6 weeks after I started my new job?  Pregnant.  And then along came Jack.  I truly believe that this job is one of the key reasons that I have been able to do all that I do for the boys.  God put me here so that I would be able to be the mommy I need to be.  I was here through the boys’ infancy; I could nurse them on demand with the help of an in home daycare provider.  It was hectic- there were lots of interruptions, but it was worth it.  Little did I know what was coming with the boys- that this was by far the easy part.

With each of the boys’ diagnoses things became more complicated.  As their mom, it was my job to do everything and anything I could to help them- I have been through more assessments (and depressing discussions) than I care to mention, I have taken each of the boys through multiple clinical trials that eventually required me to take FMLA to preserve my employment, I have taken every Friday off for months to take my son to mother-son speech program.  We now have in home therapy every day of the week Monday-Friday from 4-6pm.  While I am still working.  As I have said, I am extremely thankful that I have the job that I have, because otherwise, the boys could not have this.  And I try to focus on that. 

 Parenting two kids with autism is incredibly fulfilling- and unimaginably exhausting.  I think that one of the hardest parts, a part that many on the outside looking in may not even realize, is that there is no true treatment roadmap for our kids.  And there is no one central to turn to, to tell you what you need to do for your child.  Instead there are about 20 cooks in the kitchen, all with different suggestions, different ideas, and you, as the parent, are left to sort it all out.  Are you going to treat your child medically, assume that there is some type of underlying physical issue contributing?  Are you going to focus on behavior?  Are you going to focus on sensory issues?  IEP’s?  Couseling?  Equine therapy?  Music therapy?  Vision therapy?  Well, the jist is that no one can tell you what is going to actually help.  All modalities have “evidence” that their methods work.  How do you choose?  Can you do it all?  Well I’m here to tell you that I have tried.  I have tried to continue working full time and providing all of these things for the boys.  Is it possible?  Well, what are you willing to sacrifice?   Your Sanity?  Well-being?  Your family life?  Your marriage?  These choices are no fun, they are actually quite terrifying.  And there is no way to know if you are making the right ones

My job no longer involves face to face, physical caring of patients.  That does not mean that I am not still caring for patients.  I spend hours on the phone with my patients now, and am a bit of a jack of all trades.  I review their clinical information and determine if they are eligible for a transplant, yes.  That is one of my main jobs.  But after this initial step, I call these patients, establish professional relationships with them and help them with everything from finding transportation to appointments, getting their medications, explaining the transplant process, helping them find a transplant center that will accept them, monitoring their rehab attendance if there are substance abuse issues, to figuratively holding their hands when they are feeling low, helping them find a caregiver when family members fail to support them, and listening to them express their doubts about moving forward with transplant, their thoughts about dying.  All while being recorded, ha.   And being called by my son’s school daily as he adjusts to his new placement, being asked to get on the phone and “motivate him” to work. 

I am lucky to have a partner in this- my husband.  The reality of the situation is that he now works an hour from home, so I am on my own with all of the daytime issues.  The fact that I also have a full time job is irrelevant, as he is too far away to assist.  And I have NEVER discussed this before- but my husband is also chronically ill.  I won’t go into details, but I will say that his illness leaves him incapable of helping a fair amount of the time.  He is busy trying to keep his own health in check, as he should be.  

I find myself yelling at my husband for being sick.  I find myself not responding to my friend’s calls and messages, actively avoiding them even.  I find myself looking forward to work, because it is my break.   I find myself running until I am completely numb, both mentally and physically.  I find myself locking my bedroom door for 20 minutes so that Jack can’t come in and talk about planes- not that it helps, as he is content to continue his monologue through the door.  I find myself breaking down every time Jack has a meltdown and becomes physically aggressive- and I need to focus on him, I need to remain calm, I need to follow the plan the behavioral therapist has in place.  But with all of the above that is going on, all I can think is, now he is hurting me.  How can this be?  What have I done wrong?  What is wrong with ME?  This one change to the status quo has all but cracked me- it is the proverbial straw that broke the camel’s back.  I can handle a lot.  I DO handle a lot.  But lately, it feels like it’s just too much.  I end the day so exhausted, so overwrought, and so empty.  I often wonder how I will make it through- each day feels like it's own individual battle.   I wake up in the morning and brace myself for all of the unknowns that are about to be lobbed my way. 

 

So what happens in the face of other stressors when one is already feeling like this?  I am told my work hours are going to be changed, that it is mandatory- ok, whatever.  We have a financial problem- mkay.  House crumbling around us?  No biggie.  Get yelled at at work?  Oh well.  I have no ability left to mount a response to these things that seem so mundane these days.  And maybe under the circumstances that’s a good thing- it’s definitely a protective thing.   I am numb to so many things- my patients at work don’t really affect me the way they used to- I care, but I don’t.  I do my job, it is my JOB.  But the passion?  It’s gone.  The compassion?  Well, I can fake that.  I am hanging on by a thread, trying to remind myself that if I made it through Nathan constantly banging his head on the floor and standing on his head, I can make it through this.  But fatigue?  Burnout?  Doesn’t even begin to describe it. 

 

Nate- development can lead to new challenges

I haven't talked about Nate in awhile.  He has been doing very well.  He has been in ABA consistently for about 10 months and in complete contrast to our experience with Jack, he has had the same tech the entire time, who is amazing.

And good things are happening- he can repeat an approximation of any word you request.  He can repeat actions, he can do many things with verbal prompts.  There is so much progress that it's hard to get into- which is an amazing thing.  

His level of awareness is much higher than it was- this brings some new challenges for our family- for the first time, we are seeing sensory sensitivities in our usually "seeking" child- he covers his ears now with loud noises, he doesn't like the snow any more.  His tech and I have committed the cardinal sin of cheering too lousy when he does something well!! This is something he never used to notice- it's a positive- but I imagine it makes his life harder.  He also wants MORE input in other ways- especially visually- he will try to grab his iPad and his brothers and put on two movies simultaneously.  Or (and this one in my opinion just shows he is a genius) he will stand on a chair and watch his iPad in the mirror.  Not even a little kidding.  

His verbal communication and note I say communication and not speech, because they are very different entities, has been the slowest to develop.  And unfortunately that lag along with increased awareness is causing him more frustration than he has expressed in the past.  He is not content to accept the status quo, i.e. the same food he has always liked- he wants to keep trying until we get it right-but often loses it before we get there.  But he is trying to do it verbally, and it's just so difficult for him- he can ask for something to eat, and then when I say what do you want? He says "iPad".  And he may even be holding it.  It's just his "default" response.    It's so frustrating for both of us.  And yet it's encouraging at the same time, if that makes sense 

I am finding myself speaking to him on a different level- I often wonder if he thinks I am talking down to him.  I can tell by his actions and reactions that he has so much to say.  And yes, we have tried a device in the past, but it was clear he was not ready.  And he has always been in that gray area of having some speech and really TRYING to speak.  Of course we don't want to discourage that!  But at the same time I want him to be able to get out what he needs.  He is doing amazing with his adapted spelling in school, has mastered matching most of his letters both lower and upper case in ABA.  When I read to him I point to the words, I have the closed captioning on when he watches a show because I have the sense that letters make sense to him- I could see him learning to read just by exposure.  And I am open to a device for him- because of his continued speech efforts, I am not willing to call him nonverbal, and I will never give up on verbal communication- but I want him to be able to express himself- and if a device is the bridge that he needs, so be it.  

His building frustration reminds me that we are dealing with a very whole, very intelligent little boy who probably wants to throw his hands up and tell us all where to go many times each day.  I can't even begin to imagine how annoying we must be when we just don't get it.  

We are getting there- man is this a curvy, bumpy ride but this child teaches me something new every single day.  And my critical thinking skills and nonverbal communication?  Through the roof!

A Difficult Update

This is a very hard update to write.  And it’s written by a mama at her wits end.

I knew when Jack had to change schools that it was going to cause enormous stress for him-  that he would have difficulty coping, that he would have a burst of behavioral issues similar to what we saw at home over the summer and this fall.  I guess I didn’t realize how bad it would get.  It does not help that one of his ABA practitioners left literally 3 days before we had to tell him that he was changing schools, that the replacement person fell through and he has been without anyone 3 out of 5 days for almost a month.  That doesn’t help at all.

 

It doesn’t help that the people surrounding Jack in all areas of his day are strangers, people that don’t know his anxiety, people who don’t understand him or know his history.  People who don’t know how to work with him.  I want to scream.  I want to throw something and have a behavioral outburst.  I want a turn. 

I don’t get one.  Instead, I am expected to remain calm when I want to tell people to get their heads screwed on straight and help my son.  To smile and act normal as I explain to them that this is week TWO and by definition the period when he is going to have the hardest time, as he comes to realize that this is indeed permanent- that he will not be at school with his friends anymore, that he won’t see the aides and teacher who knew, and nurtured him for the past 4 yrs. anymore.  I am expected to deal with a bus driver who wants to sit him at the back of the bus by himself because of two verbal outbursts, when what she doesn’t realize is that this is only going to make it worse.  I am expected to be dandy with the school calling me and asking me to get him on board with doing his work this morning- to talk to him in the middle of a meltdown and “fix it”.  To deal with them telling me they are going to give him “a good month”, before we have to meet.  This in my view means, they want him out.  Already. 

 

I am expected to smile through him coming home from school crying many days, telling me that the principal told him to “cry all he wants”, and him sobbing that he never wants to go back to school again. 

And I can’t handle it.  I can’t.  Because this fall was already traumatic for all of us.  And the people surrounding him now don’t seem to be giving him a chance.  And I can’t make them do it. 

I wish I could put him in a private school.  I wish I could find people to work with him who love him.  I wish I could make his ABA be consistent, I wish that asking for someone to come 2 hrs. a day 5 days a week and do an effective job wasn’t asking for the moon.  But apparently it is. 

I am scared to keep him home, I am afraid to put him on the bus.  I am afraid to make a work call for fear the school will call.  I am afraid they won’t call when something really serious is going on. 

There are days lately that I just don’t feel like I can do this anymore.  I don’t know who in this universe thought I was strong enough to do this for two kids, but I feel like they were wrong.  I am tired and I am scared.  I don't know how to advocate for him at this point, and I don't know what to advocate for. 

 

My Weight Loss Journey

This is a mama post- very little to do with the kiddos- you've been warned!!

I posted before and after weight loss pictures the other day on Facebook and got about a bazillion "how??" Questions. So now I am sharing all that I have done.

The realistic answer is the one we all hate to hear- diet and exercise.

That being said, over the past 2 years I have tried so many diets it is ridiculous, dr oz cleanses, weight watchers, shakeology, other shake programs, the hcg diet, essential oils, voodoo (kidding). I could never sustain any of it.  I drank a cleanse shake twice a day about a year ago for 2 months that was recommended by a homeopath, it literally tasted like chalk- by the end of this I was actually gaining weight.  

I shredded, I 21 day fixed, I did insanity max- it all hurt like hell and I didn't see the results I wanted and needed.

We all need a catalyst to change- something that drives us. I will admit that for me, while I would like to say it was an internal drive to better myself, the initial trigger was caused by an external factor, which was my sisters wedding.  I had been looking forward to the day she got married basically since the day she was born (she is 12 years younger than me), but when it was finally happening I was terrified at the thought of wearing a bridesmaids dress with a bunch of women at least 10 years younger than me- and I was the heaviest I had ever been.  I didn't want to embarrass myself, or even worse, her.  Cue all the diet craziness.  The hardcore attempts started last January- and did not go very well at all. About a month after me, a neighbor started a medical weight loss program.  I watched her weight seem to literally fall off (obviously not the case but compared to me it sure seemed like it!!). About 3 months later-

A good 30-40 lbs less for her and probably 5 lbs MORE for me, I finally decided I was going to find a way to stomach the cost of the program she was using and get myself in there!  I was in a time crunch.  It took over a month to get an appt, by the time I got started it was June 23rd- two months from the wedding.  I had little hope I would see a difference by then but I was not giving up without a fight.  We went to the beach for a week during my first week on the diet- I literally sat in an ice cream shop across from my whole family eating Sundaes while I drank a lemon diet shake- one of the hardest weeks of my life- I lost 4 pounds.

Here is the website for the program, run by a local Pcp.  It is not one of the big popular diets, but the products used are prescription and available through other practices:

http://livelyte.com/

The program involves shakes, bars, puddings and soups.  It is very restrictive and high protein. There are weekly classes and the program is supervised by a doctor and a nutritionist, who when you get close to your goal weight help you adapt back to regular foods, which I have been doing for the past 2 months.  You continue to lose weight as you adapt, if you follow the instructions and now I am at "maintenance".

After about a week on the program I started adding in exercise- first Jillian Michaels shred- it took me 60 days instead of her prescribed 30 to get to level 3- which is killer- but I have abs and nice arms for the first time in my adult life and I highly recommend it!! About two weeks into that I started couch to 5k, which is a nice slow progression to running a 5k.  I ran the full distance the Thursday before my sisters wedding.  I will disclose that I ran cross country in high school and ran some as an adult, so it wasn't all new to me, but I promise you this-  it was "like new" with how out of shape I was when I started!!!

By the wedding I was down 20 lbs, not nearly where I had wanted to be, but a huge relief after where I had started. The dress I had tried on and cried over in June was taken in by about two sizes, so that was good

After the wedding, one of the medical technicians at the program said, "so are you finished now?"  And that's when it hit me that no, I was not, if I was going to work this hard, I may as well finish what I started!

I have lost the other 20 lbs I always wanted gone.  I ran a 10 k, then a half marathon.  I kept doing Jillian Michaels shred on my off days from running- it's 20 minutes people- we can do ANYTHING For 20 minutes!! I can plank row with the best of them these days!  And I try to log at least 20 miles running each week.  It's not easy with the kids schedules, therapies, countless IEP meetings etc, but it is WORTH IT.  And not just for me- they have a completely different, energized mama who takes them on outings after her 10 mile runs on the weekends.  Not to mention a happy mama!  Jack observes my Jillian Michaels and tries to do it with me- he stands behind me and tells me I am making a "good choice".  He has been my biggest cheerleader.  

So there is no big mystery here, lots of hard work, an investment of time and money, and a good team of professionals. But if I can do it- anyone can- full time job, two special needs kids...these things just mean time management is everything. And now I have a new sanity saver- running- it is everything to me.  And boy did I get my results!!!

A New School For Jack

I have been sitting on this for over a week now, I knew that I needed to write this, not only to keep friends, family, and other followers in the loop, but also to process all that has been going on for my own sake.    In a year of many changes for the boys, these past 2 months have led to quite possibly the biggest and most traumatic change for our family in a long time.  My husband and I have been to multiple IEP meetings (again) this fall, and through many discussions between us, with educators, therapists, administrators, and advocates.  And we finally came to a decision. 

Jack is moving to a new school in January, another mainstream elementary school, where they can better “accommodate” him.  I have had soooo many people ask why this can’t be done at his home school, where he has been since kindergarten.  There is no easy answer.  There is no real answer.  Jack has had significant special education services in school since about midway through kindergarten.  But to be honest, it has never been enough. 

He was diagnosed with Asperger’s at age 3.  At that point he was provided with (minimal) special education services in his regular preschool.  He probably should have gone to the same early childhood intervention program that Nathan went to; it probably would have benefitted him greatly.  But, for lack of a better explanation, he could talk his way around it.  He sounds (and really is) so smart when he opens his mouth, he knows so many facts; he has ALWAYS been able to talk (well since he was 18 mos).  When they have autism, adhd, and anxiety, the ability to speak is such a blessing for a child as it relates to being able to communicate what they need, and such an obstacle when trying to get this child what he deserves.  This is coming from a mom who has one child with speech and one who struggles tremendously with verbal communication.  Speech almost automatically lumps a child into the category of “high functioning” and sometimes that just isn’t the case!  Do I think Jack is high functioning?  Maybe.  I honestly don’t know what I think at this point, and I don’t know which behaviors are autism, which are adhd, etc.  The comingling diagnoses complicate the situation all the more. 

What I DO know is that this little boy has had significant challenges since birth, with self-regulation particularly- there was never any self-soothing, or entertaining himself, constant attention has always been required.  And as exhausting as that is for us as his parents and for his educators as well, I can only imagine how exhausting it must be for him. 

He went through public pre-K, with again, minimal special education services.  He arrived in kindergarten with an hour of special education services a WEEK.  A titch of OT.  NO speech.  It makes me shudder even now to think about how much more he deserved and required back then.  We hired an advocate to come with us to his kindergarten IEP meeting, and he ended up with an aide full time, including the walk to and from the bus, and lunch, recess etc.  He needed that much guidance, which to me and his father was a “duh” kind of moment.  But it took a lot of fighting to get these initial services for him.

We have slowly added speech services (for actual conversation), more pull out services, and assistive technology to his IEP.

Before school work became multi-step and required more attention, he could compensate for his challenges to a certain extent.  We are way past that point and for the past 2 years we have watched him struggle, particularly with math.  Here is a hint of how smart he is though- through all of his attention issues, his obsessions with other things, obstacles in other areas; he has been able to maintain grade level performance in reading and spelling.  I would estimate that he is able to maintain probably 10-25% of the amount of attention that the other kids have.  This makes me proud, and it makes me sad, because I can only begin to imagine what he could do if we could get his full attention for a little more of his day.  That being said, we have tried 6 ADHD medications- he has had significant issues with all of them.  He is in therapy for his anxiety, ABA for his behavior and focus, and we have tried a multitude of other medications for anxiety,etc.  We can’t seem to get him there.

Add in a school that is “highly ranked” academically and known in special education circles as not being “friendly” to kids with special needs, and it’s a recipe for disaster.  Now I need to say one thing- the actual special educators who have worked with Jack (at least since first grade)?  They are nothing short of amazing people, amazing teachers.  People who will go above and beyond to give your kid what they need, even when they are not allotted the time and resources to do so.  We have not felt the support of the administration when it comes to keeping our son at his home school.    I know of multiple kids in other local schools with more involved IEP’s who remain in their home schools despite the fact that there is no dedicated “pull out” classroom available to them.  Children who are fully out of the classroom for language arts and math, who are not potty trained and remain in their home schools.  Yet, we are told that because Jack requires pull out for math and language arts (and require is a strong word in language arts, let’s just say he makes the majority of his progress in this setting)- his school cannot accommodate him because they do not have ”full pull out” capability.  When I was first told this, I wanted to fight, I wanted to scream and tell them my son deserved to stay (because he does).  Then I thought about Jack.  Really thought about what he needed.  His behavior has been worsening at home, he fights homework even more than he used to, his anxiety across all settings is much worse.  All of these things are symptoms of a larger problem.

I know he feels the pressure of not being able to keep up, of not being fully accepted as he is.  I know that because he is unusually self-aware, he knows he is not “the same” as the other kids in school.  And it is bothering him.  A lot.  There were two choices for us as his parents- we could fight, go to mediation, force the school to comply, keep Jack there, and watch him continue with the same struggles because let’s face it, no matter how hard these teachers work to give him what he needs, their other responsibilities will not be lightened-- OR we could change something.  We choose to change something.  We chose to send him to a school with a formal “pull out” classroom, partly for this feature.  To be honest, there were several other deciding factors- the school is much smaller, the faculty has the reputation of being “special needs friendly”.  And that is the real reason we agreed.  Parenting is HARD.  Other parents may have come to a different decision- but we have come to understand that “fighting the good fight” is not always what is best for our son.  While we want him to have what he “deserves” (aka to be able to stay in his home school), we also have enough perspective to grasp that maybe he deserves even more than that.    We have seen what a school that functions with a greater degree of acceptance can accomplish just by watching Nate this past year in his autism classroom.  And to be clear it goes both ways- not only is Nate greeted with more acceptance by the faculty and staff, but the other kids in the school are taught to accept children with differences  at a much different level than where Jack has been going to school.  The atmosphere is completely transformed.

I have known this was coming for a long time.  A loooong time. We have two neighbors who have children with special needs.  When I told them 4 years ago that I was sending Jack to our “home school”, the response I received was ominous at best- “good luck”.  Ouch.  Both of these other children ended up in different placements- the parents wanted them out of the home school by the time they went.  And now I get it. 

Please keep our sweet boy in your thoughts - this is such an enormous transition for him (and our whole family).  And from his perspective it has all happened so quickly- we didn’t tell him about it until a definite plan was in place, and unfortunately that was just a week ago, and then his last day at his current school was last Wednesday (yes, the day before Christmas eve, I know).  After Christmas break he goes to his new school.  He will miss his friends, his teachers, and the aides who spent countless hours with him every single day.  I know he will form new bonds, I just wish he didn’t have to.  

Why I'm Not Having A Birthday Party For My Son

Nathan is turning 6 this week- SIX!!!    He has come so far, and we are so very thankful.  And here's the thing, so have we, as his parents.

Thus, we are not having a birthday party for Nate this year.

Parents can all acknowledge that the first few years of our kids' lives, the birthday parties aren't really about the kids- they are about the parents, family and friends celebrating the child (and the act of keeping them alive lol).  But as kids get older, that all changes- the parties revolve around the child's interests, their preferred activities, their preferred friends.  And that's how it should be.  Two years ago, Jack's wish was to go to the Museum of Natural History with mom and dad.  So that's what we did.

What have we been doing with Nathan?

We have been guessing.  He "seems" to like Mickey, let's try that this year.  What should we do?  Who should we invite?  It has continued to be OUR friends, people we know through various organizations, autism causes, etc.  Which is fine of course, but was it about Nate and what he wanted?

Well how could it be?  He can't tell us.  It's very similar to how I continue to play detective whenever he is "fussy", trying to figure out what is wrong.  He still can't tell me, although he is getting closer.

He watches the same scene of "Frozen" over and over again- does he like "Frozen"?  Or the movement of the snow in that scene?  Or the noises?  Or the song that is playing?  If I did a Frozen themed birthday party would he love it?  Or wish for an avalanche themed birthday party (because that's the part he is watching on repeat)?  Let's take it a step further- does he want a party?  Does he like being in a crowd?  When do I, as his mother, know that he is actually happy??

Here:

Right Here is my happy son

Below is a situation that would make most kids ecstatic.  I took Nate to our local toy store today, just let him loose, and waited for him to "find" a toy he would like for his birthday.  There is a snip it of that situation in this video.  We were there for over an hour.  He sat on one riding toy, and played with the jingle bells.  I bought the riding toy- but only after making sure the toy store accepted returns.  

As with most things in our world, results are not typical.  So guess what?  We have decided birthdays will not be typical either!  I am not wrapping his presents this year, I am setting them up.  I have no expectation that he will play with any of them, at least not initially.  I have some new beads I will give him, because I KNOW that will make him happy, and it's HIS day.  He deserves to feel happy!  

We will have chick fil a for dinner.  I will make a cake, with a little hill and olaf rolling down it (aka the avalanche) and we will probably all say "what the what?? THAT happened" (if you've seen the movie you know).  We will get in our jammies, and cuddle in bed with one of the sweetest boys who has ever lived.  

And that is how we are gonna roll!