Don't apologize!

Hi

I wrote in a past blog that if you met one child with autism, then truly you have met ONE child with autism.  You see, autism is different for every child.  Maybe that is why there is no cure at this point.  And then, maybe that's why we don't really know for sure what causes autism.  The brain works in mysterious ways!

There are many "theories" about what causes autism.  But in the grand scheme of things.....does that take away my guilt as a mother.  Yes....you heard me right.  Guilt.....I have spent 5 years asking why and how.....I have read reports and talked to doctors.  Was it vaccines?  I don't know......Was it the fact that I had the flu during my first trimester?.....I don't know.  Is there concrete evidence?....I don't know.  And I am not sure that I want to know......because it doesn't really matter.  I mean, autism is here and it sure the hell ain't going anywhere.

And, I have had many experiences with whether or not my child actually had autism.  In the beginning doctors said no, then they said yes.  Which is it?  He made no eye contact, he didn't answer to his name, he wasn't making his milestones.  But I was told that boys are slower in development and the thing is, I couldn't compare my son to my daughter really because she was speaking full sentences at 9 months old.  Yes....she has always been a talker, folks!  So what do you do?  You know something is wrong.....as a mom, you have that intuition.  And a friends' prodding only furthered my questions.  In reality,  I knew something was wrong.  So I kept asking questions.....I probably got super annoying but I had to!

Speeding up to the present.......I have an acquaintance that is just now getting her son a true diagnosis of autism.....he is 11.  11 folks......yes, 11!  And it took a serious incident that showed he was a danger to himself and others.  Here is what is heartbreaking, a mom was told that autistic kids don't show remorse so no way does her kid have autism.  Really?  That is heartbreaking my friends.

You see.....autistic kids are loving, smart, remorseful, aware, funny, happy, sad, angry, etc.....do you recognize those feelings within yourself?   I do.  I see these things in my kid....who is autistic.  Hearing this moms story for me was hurtful....because my kid is remorseful.  He always apologizes for his actions after having a behavior.....does that mean he is not autistic?  Absolutely not and I think that is one reason as to why we can't answer questions about autism.  Because one kid with autism is just one kid.....all brains work in different ways......I am happy my kid is remorseful.  It means he feels and thinks about his actions.  But really, I don't want him to apologize.  He can't help himself, he can't help how his brain sparks.......don't apologize! 

I will continue to repeat myself forever...that autism is a daily journey because it is.  My kid is autistic.  But autism is not who he is.  It's solely a piece of him.  My kid is everything I hope for him....he is funny, loving, adventurous......yes, we need help finding these pieces of him...he needs help expressing himself at the right time....but, the thing is that autism doesn't have him.  He has it!  My job is to get him the help he needs so he can function the way you and I do.

Getting that help is not always easy.  It is a fight for many parents.  It often takes months to get services and sometimes even years!  Doctors say early intervention is key........and it is.  So keep fighting parents.  Keep advocating because we are all they have......don't give in, don't give up.  Follow your heart and listen to your intuition.....keep asking questions.  You can do it!  It's not easy.....you don't always want to hear outcomes but you can do it.....your child needs you!

TTFN
Martha

The Struggle is Real....

Hi all,

Ya know......Autism is a journey.  Often we think about journeys in terms of time.  And I, personally, think that journeys happen over months and years....not daily.  But honestly, that is Autism my friends.  Autism is a daily journey and sometimes a daily struggle.

This past week was awful.  It made me struggle in many ways.  I wasn't effective as a mom, wife, person......at least that is how I felt.  JB had two really horrible meltdowns.  REALLY horrible.  Here is the thing.....with Autism, you sometimes have no idea what the root of the problem is because it's often something that cannot be communicated.  And the way it is communicated is through behavior.

SO..........

Wednesday, JB just could not get himself, keep himself, together.  During therapy, he simply screamed for me over and over.  I would try to help, then I became a target.  The target.  THE TARGET!!!!  What does that mean, you ask????  Well, JB screamed and cried.  He ran to be with me but then he would bite me, hit me, head butt me, kick me.......say very vulgar things to me.  Then, he would cry and want me to hug him, he would beg me to tell him why he was such a monster......Yes peeps, my 7 year old does these things....says these things.  It's almost this game my heart goes through......so strong and patient, then desperately wondering why and how I can help.    My heart hurts then rejuvenates.  And here is what people don't know, it's a cycle!  JB apologizes and says he doesn't mean to do the things he does.  Thinking it's all over....I engage and hug and comfort.  But it's the attention he seeks.  I should know better because it starts all over.  The hitting, kicking, the language, my broken heart.......this cycle goes on and on.  It can last for minutes.  It can last for hours.  It effects every aspect of life.

No wonder AP struggles.  During JB's meltdown, AP wanted help with homework.  I couldn't help her.  I couldn't.  Her response was to scream and slam her door.  Was to yell that JB gets all the attention.....all I could tell her was to not worry about her homework.  That I would email her teacher.  But for her, it was just another reason to hate Autism.  To blame Autism for the lack of attention she gets.....times like these make you feel lower than low.

Lower than low......

But then the next day comes....all is forgotten for JB.  And this angel arrives because that really is what JB is....yes, an angel.  He woke early on Thursday and asked to make his sister a PB & J sandwich.  He made her lunch, then his, then helped with mine.  It was a reminder, a very good reminder of who JB really is.  Who he really is.....it's not that I don't know, but the behaviors mess me up emotionally.  Screw me up........make me question myself and the world around me.....

If I feel this way, then what does my AP feel like?  Probably just like me......and just like me, she keeps quiet.  Because that is what I have taught her through example.  I keep quiet.  Thinking no one understands.....and yet my 10 year old daughter, is following my lead.  Geez,  momhood is hard...but so awesome because as hard as it can be...I also love the experiences I have with 2 great kids.  You see, people told me that my son would never talk, never hug or touch, never look me in the eye, not really amount to anything.......well, shit, guess what?  He does all that and more.  And I am so proud to be an Autism mom who can share my Autism life with others.....and I am working on being better.  Working on telling my friends more and more.....because my friends want to help.  I just have to let them.  And in doing that, AP will learn from me that friends can help.  See, sometimes all you need is a smile or a simple hello to get through the struggle.....because the struggle is real.  And I will make it!  AP will make it.  JB will make it!

TTFN

Martha

The True Meaning of Normal.......take 2

Hi Readers....

Welcome back to part 2 of my post from last week....I am following up because I had asked AP to make a list of what makes her normal and to write about what she thinks is great about her autistic brother, JB.  I think it's important to share her thoughts.  Especially because life with Autism is hard...I think I share a lot of the tough and not enough of the joy.

Autism is hard and it will always be a long journey.  But Autism is also amazing in many ways.  JB is smart, loving and extremely witty......his wittiness, come to find out, is something that AP absolutely admires.

We had our meeting and her list of things that are normal included:  1) school, 2) therapy (shocking because it disrupts our daily lives so much), 3) reading everyday, 4) love, 5) music.....that's as far as she got because to her those were the only things she could think of.  But, when it came to writing about how great her brother is.......the child wrote a three page essay on how cool he is.  And the biggest thing for her was his sense of humor!  She loves to hang with him and talk because he makes her laugh everyday.....She says that makes her feel good.  I then shared with her that JB's sense of humor was something that keeps me going and enlightens my day....he truly is funny!

He also is weird...AP and I both agreed to that.  For example, I freak out regularly because JB loves to make himself shake.  I always panic that he is having a seizure....but nope, it's just "a thing".  These days, I just tell him to knock it off....sometimes he listens and sometimes he doesn't.  But then, I also told AP that she is weird. She does this weird dance that includes smacking her own butt.  I also shared that I am weird......I mean, really, who isn't?  We all have a "weird" thing....Last post I shared that I am a huge Star Wars geek but guess what, I don't like my food to touch?  A long time friend, who will kill me, loves to eat a handful of fresh fallen snow......I also have a friend who hates to dress up but her nails are to die for....Everyone has something.  Those not normal things make us normal......AP needs to know that life is okay as long as you are doing the best you can.  And our not normal makes us normal...makes us who we are.

And although, Autism is a struggle, it makes JB who he is.  And who he is...well, he is a loving boy who is good hearted and super funny.  Those are the things that I told AP she cannot forget.  She needs to hang onto the things she loves because those are the things that make us happy.

Who cares about normal?  I don't.  Life is not normal.  I am not normal......and I don't want to be.  Because my wacky self makes me who I am.....love it or leave it!  AP has now promised to talk more and to also share when she needs a break.  Something we all need.....ya know, I forget a lot about myself because kids come first.  But I also forgot that AP may need some time as well....just to recharge.  My goal....stay abnormal and give breaks as often as I can. 

TTFN
Martha