Don’t Give Up

It’s been a little while, ay?  Well, life is busy.  Sort of crazy busy really.  There’s so much going on, and lots of it is good.  G started ABA mid May, and my stress level dropped tremendously because of it.  I am not sure if it has been that I get two hours to play with the baby and clean or if it is that I know Gabe is getting more of what he needs or I get a little break every day from engaging/chasing/structuring everything.  But I think it is mostly that G is getting what he really needs to learn and engage.

So of course, we found out our therapist is leaving the center and she won’t be able to stay with us past next Friday.  We’re back to the drawing board when so much has already been gained… when I finally felt like the stars were aligned.

The work never ceases in keeping things smooth for a child on the spectrum.  And our little girl, while not displaying the same symptoms as our son, is now being referred for OT because she is engaging in a lot of sensory seeking behavior and doing motor tics.  It all is what it is, but it’s happening.

What has been amazing is that our son’s aggressive behavior has majorly decreased since starting ABA.  Learning turn taking intensely every day has helped him develop major skills in sharing, especially with his little sister.  How sweet it is to see him give something to her… spontaneously and nicely with a smile.

I have to eat my fears over an ABA program because my son is also learning to ask questions.  In jusT one week he has picked up on asking “What is it?” like wildfire.  This is a child who asked maybe…. two questions spontaneously ever before this program.  ABA is really worth it.

And that’s why I’m not giving up on working this out as our current amazing therapist leaves next Friday.  We’re going to get this straightened out.  And we won’t give up.

Real Love

Mother’s Day is tomorrow, and my sweet husband has planned to take us for a ride down the shore (we’re in Jersey… we like to go down the shore… but I wouldn’t say we are very ‘Jersey Shore’ if at all).  I can’t even express exactly how good it made me feel for him to rush around tonight packing things for our little morning joy ride and beach walk, but it made me feel very warm and loved.  What a good feeling that is.

And I wanted to take a second to reflect a little bit about love and motherhood with a child on the spectrum.  I find that it is a common misconception about people on the spectrum that they ‘do not feel love or show affection.’  This can be the case, but I find, especially as our family networks and meets other families with members on the spectrum, that this is not a very accurate idea.  I think a better way to look at it is that people on the spectrum might not show affection or communicate it the same way as others.  Some on the spectrum can’t show it physically because it hurts to do it.  Literally.  But I don’t think there is a lack of love.

Our son, for instance, is a very sweet and loving little guy.  Emotions are very hard for him to grasp, though.  Still, there is no question that he experiences emotions.  The issue for him comes in translating what he is feeling into some sort of cohesive message– obviously this is a likely factor in his aggressive behaviors– and that makes him frustrated.  Love is definitely an easier one for him.  Granted, when I say love is easy, I only have received one spontaneous “I love you” from him at this point, and his other “I love you”s have been in response to me saying “I love you, Gabe.”  Quite often, he repeats the phrase and says, “I love you, Gabe.”

BUT– and this is a big but– he gives kisses and hugs and cuddles spontaneously.  He tells me he wants to “go in Mommy’s nest and cuddle” (which means he wants me to lay or sit on the couch with my legs up so that he can squirm behind my legs and sit behind them like a bird in a nest).  And while he sits in my nest, he gently will rub my arm and lay his head down on me.

That is love.  The action of love between a mother and son.  Of course my heart would dance with joy if he were to start spontaneously saying “I love you” or expressing his emotions more clearly in general, but I know my son loves me.  He shows me every day in some way.  And sure, there are times when it is hard to tell, and the communication lines are so very mixed up and confusing for him and for me, but that loves is there.

Our love, mother and child, is what leads us through the dark… hand in hand.  This journey of parenting– heck, I’ll even say special needs parenting– is the hardest and most rewarding of my lifetime, and what a gift it is to be the mother of my children.  How grateful I am for them.  Because of them, how I grow.  And as I learn the balance of being a tiger and a lamb for my children, I hope I do them justice.  I hope I show them what it is to be … loved and loving.

…

Happy Mother’s Day to all mommies everywhere.  Cheers to you!

Tips for the Bathtime Blues

Got bathtime challenges?  Boy, do we know the rinsing roulette in our house!  Here is what we have learned in dealing with sensory issues in the tub with a toddler.

Giving  some predictability may help.  Bathtime was a huge struggle for us (and can still be) because of temperature sensitivity and rinsing of hair.   G has hypersensitive hearing and hates sensory experiences he is not expecting so rinsing at bathtime is rough on him.

If your child can count or understands numbers, use them to give some predictability to the # of times being rinsed.  “Okay, time for rinsing hair!  10 rinses with the big blue cup.  1…. 2…. good being brave….. 3….” I know it can sound cheesy, but it helps! We also have a cup that is rubbery and sort of sits/ molds to my son’s forehead so we can rinse without it going over his face and ears— mostly… he still moves a lot.  And if numbers aren’t any good, any sort of listing or talk about something reinforcing during rinsing can be grounding.

Also, you can do sort of ABA with this… perhaps a special activity after bathtime to look forward to?  a book? a preferred bedtime snack?– a small picture reminder of this reward at bathtime might help– you could refer to it as you go– “first rinsing, then x!”

If the temperature is an issue, try doing some water activities outside of the bath and teach temperature language.  Distinguish that warm is not hot, that cold is not cool, that ice is very cold, etc.  Let your child explore and play in water in a “safe” environment to get her more apt to accept bathtime.

These are all strategies we learned through our Early Intervention Occupational Therapist.  I hope they can help you, too!

What my name is worth.

I am finding more and more that people (especially some who do not have children or some who do not have children with special needs) miss the intrinsic nature of special needs and medical-related conditions such as autism and how they regulate a family’s every day life.  It’s not a construct or a purposeful attention getter.  For families who handle the challenges of autism, autism as a word holds no stigma.  It is just a what-is sort of word.  It’s not a dirty word; it’s life.  It affects how you walk to the car, how you get dressed, how you plan for a family outing, how you plan for a holiday, how you do just about everything.  There’s not much fly by night unless you’re looking for a meltdown.

And within that everyday life, autism can affect so many larger pieces… the structure of a day, the schedule of a week, employment choices, lifestyle choices, location choices… everything.  I remember being younger and more ignorant when using that word “autism” would hold weight that could easily be flicked away as if to say– “so what?  autism?  that is not an entire life… why mention it?”

Of course it is not an entire life, but it is our life right now.  We have embraced that this word is the best word to describe what we do, what we think about, how we feel, where we go… and as much as it is on the minds of all in our home, I am the spearhead of all that deals with therapy and doctor appointments and research and daily activities.

I’m a singer, sure… I sing.  I sing for fun.  I’m a writer, sure… I get paid to do that, and I work to protect the environment.  What am I really?  I’m a MOM.  My children are my heart.  And what am I doing with them on a daily basis?  Here is our newly-revised schedule:

Monday

ABA 2 hrs

Tuesday

Transition to Preschool 2.5 hrs

(1X month– Baby Girl speech 1 hr)

ABA 2 hrs

Speech 1 hr

Wednesday

Baby Girl Developmental Intervention 1 hr

ABA 2 hrs

OT 1 hr

Thursday

Transition to Preschool 2 hrs

ABA 2 hrs

OT 1 hr

Friday

(1x month Physical Therapy)

ABA 2 hrs

And while I am driving to transition to preschool, I am singing or listening to music of my choice because my kids tend to like my voice (for now) and anything I choose to listen to.  And at night when they go to bed, I read and write and work like a crazy lady.  Whenever I get a chance during the day, I brush up on work, and I try to keep up on my house.  But what is my life really lately?  It’s me advocating for things related to this word autism.  It’s our lives right now.  It is the reason I do what I do how I do it.  It might not be US, but it is a part of us… a part that has still recently (I mean it has not even been six months since the diagnosis) become clear to us.  There are so many questions left unanswered and screenings left to be done.

So won’t you just say it?  That being an autism advocate is MY life, and that it is okay. It isn’t an over-dramaticized or a stigmatized or an ugly thing… autism isn’t a dirty word.  It’s a word worth mentioning.  If you mention me, spread awareness, because that is what my name is worth right now.

Where We Are Now.

My son is 19 months older than my daughter.  Today I can truly say she has surpassed him in her ability to communicate her emotions and needs in her simple use of nonverbal communication (pointing, showing).  I am overjoyed that my daughter is meeting such crucial milestones in social-emotional growth.  I am grieving that my son is now falling behind his baby sister, albeit they are “close” in age, in a part of his development.  When I take this into consideration with his truly emerging sight reading skills, his math skills, his command of colors, shapes, amazing memory, impressive comprehension skills of concepts like butterfly life cycles, incredible language abilities (his USE is the problem) for his age… I have a child who is almost six years old in some ways and eight months old in other ways.  He’s pretty much daytime potty trained, but he freaks out when he has to put his pants back up- and he surely hasn’t the skill set yet to pull them up himself.  I guess it’s no wonder that he is having violent outbursts and meltdowns.  How frustrated he must be to be so beyond and so behind.  

And I just love him.  I love him so.  And I love my daughter, too… I feel for her right now.  She is walking all over the place now, and my son is not happy about her being all over the place… it is not easy to be the little sister right now, and I feel for her.  I feel for her big time.

I come from a “Place of Yes.”

In general, we are happy with our support from early intervention.  I have to say, though, that our service coordinator says “No,” a lot.  She tells us programs don’t exist when they do, that our son wouldn’t qualify for physical therapy when he then did, that she can’t write a short letter in support of our grant proposal stating we could use financial support to aid in co-payments for ABA (because NJEIS wouldn’t offer us more than one hour ABA consult per week despite his now very blatant needs of an intensive ABA program and doctor recommendations for it) when in the same e-mail back and forth of saying “no” she could have so easily just done it.

I was sitting here this afternoon sort of perplexed.  I worked for a nonprofit hospice at one time, and I used to get lots of different demands from patient families, but I didn’t ever say “No” very quickly, if at all.  It wasn’t just because I understood customer service; it was because I had compassion and understood my role as a professional.  When it comes to a patient or client needing service and support for a serious situation, isn’t it a normal response to try and then offer different options if the first choice option is not available?

I guess I come from a “Place of Yes” while our service coordinator comes from a “Place of No.”

Annnnd I now am going to make myself look very mature with a reference to the Real Housewives of New York.  Just watch the first clip of Kelly & Bethenny at the charity meeting and imagine Kelly is our service coordinator and I am Bethenny and imagine we are talking about anything early intervention.

Dismissing Autism Makes Me Nauseous.

I am a very passionate person, which can be a great strength and flaw, but when it comes to my children, I tend to think it is mostly a gift.  Because I don’t easily take no for an answer, I don’t accept things for what they seem, and I generally don’t let ignorance beget itself.

What is frustrating, though, is that no matter how passionate I might be, there are people who are equally as passionate and… opposite.  And that’s fine– diversity is a good thing– but when it negates the very existence of your child’s issues or, in fact, blames parenting for the challenges faced in your home, it really is bothersome.

For instance, when in the midst of autism awareness month, you find an article like  this nonsense, stating that autism is a false ‘epidemic,’ you get a little nauseous.  I think it is just so easy to write about autism like it is some philosophical or psychological game when your child does not have a diagnosis of it or does not meet the criteria for it.  Families dealing with autism struggle every day, not because the parents aren’t trying, not because the children are bad, not because the child is lazy or antisocial or any other stupid casually used word that sums nothing about that child up at all.

I hate the argument that the label of autism is used lightly, as if people WANT it.  When my son’s issues truly became obvious to me last July, I cried myself to sleep for an entire week straight, not because I had made up his problems to alleviate my responsibility as a parent, but because I had jotted down notes about him and started searching and realized he met the criteria for autistic disorder– a lifelong and extremely challenging disorder.  Believe me, the tears I shed were not out of joy– I wasn’t relieved to realize my son has a permanent set of challenges that will make his every day life difficult.

And that’s another thing.  I love when people assume mild autism is not challenging, as if it just means a kid is awkward.  What seemed like mild autism in our household has made getting dressed, eating, feeding, walking up stairs, going out in public, playtime, bathtime, all facets and aspects of life etc. a great challenge.  As our pediatrician said, “a 2 out of 10 is not a 0.”  Why don’t people understand that?  And why don’t people understand that autism affects children and people differently at different stages of life?  My son seemed mild at one time, and he has made a lot of progress in some ways, but now he seems more severe than before because he is getting older.  I love when people say kids diagnosed with mild autism grow out of it.  On the contrary, he is growing into it. His issues in self injury and not responding to his name are not just a frustrating behavioral issue of selective listening or sensory challenges– they are true safety issues.  Mild autism is a myth, my friends.  If a person is on the spectrum, he or she is on the spectrum.  Autism is real.

I also need to emphasize that I don’t care about hand flapping or spinning or other harmless self stimulation behavior.  We have no plans to target those behaviors in a behavior plan.  We don’t need an explanation for those movements; we don’t need to ban lining up trucks.  But we do need to understand that those movements and repetitive play behaviors are telling of his state and level of comfort, that sometimes they are useful ways of coping with stressful situations or uncomfortable sensory experiences.

But eye poking, self-pinching, self-punching, hitting an infant sister, slugging Mom or biting Dad, meltdowns of epic proportions… these things are not okay.  These are not just behaviors that can help us understand him– they affect health and safety of an entire family and friends and more.  Do these behaviors need a label to be handled?  Not in and of themselves, but when they occur with enough other criteria for diagnosis, you realize that these behaviors and the other social communication challenges in a child with autism do not occur in a vaccuum.  It makes more sense to look at all the challenges together and give it a name than to only analyze one piece of a person.  It makes to figure out what works best for a person with alllllll of these issues.  It’s not narrow-minded or easy to do things with the autism label; it’s smart and comprehensive.

Looking at the whole person is part of why I am glad that the DSM V will include a sensory criteria for diagnosis of autism.  My son has serious sensory issues that are not directly explained by his diagnosis of autism as they are not a current criteria for diagnosis, but many people on the spectrum have at least some sort of sensory issue from hyper to hyposensitivity.  The fact that the sensory issues coincide with these other challenges is significant and worth being part of a ‘label.’

And it cracks me up when people act like labels are just a fad or the easy way into services.  As if labels are fun!  Weeeee, let’s go to the developmental pediatrician today and get scripts for occupational, physical, speech therapies! This is AWESOME!

Um, no.  But the label does open up doors to services… because the kids who are diagnosed with autism need the services.  How does that not make sense to people? A kid needs intervention so much that they are diagnosed with autism or a related pervasive development disorder… and this is bad?   This is bad that children and people of all ages are then being cared for the way they should be?  No, this is good.  And it might be that this ‘epidemic’ is partly explained by providers understanding children and developmental issues better than they used to understand them.  Identification might be better.

But that’s not the end all be all of this ‘epidemic.’  I’m telling you, I grew up in America… I went to public school, and I didn’t see the same issues facing children when I was little.  I have an exceptional memory, but I don’t remember a bunch of boys who could have been labeled with autism who were instead “just trouble makers.”  (And I also contest that the kids of my era who were “so lightly diagnosed with ADD” had serious challenges in school and needed the services they received.  ADD isn’t a myth, either.)  There weren’t a bunch of kids sitting there unable to pull up their pants or answer to their name or walk into the restroom because of the sound level of flushing toilets.

I have seen quite a few children with these issues now without even looking for them.  I find it a little odd that most of the boys I know who are in my child’s age range have some sort of developmental anomaly, whether it be a speech delay, sensory challenges, strange levels of anxiety or something else.  Something seems amiss here.  Sometimes I wonder if the human race is simply changing, maybe something in the environment is changing us, maybe we are adapting to something… I have no idea what, but it is not an over diagnosis thing.  I just don’t believe it, and I am one skeptical lady.

Most importantly, I want to emphasize that I do not write this with anger at autism or my son himself.  I love my son with such passion that I can become quite zealot-like about autism.  I am passionate about my boy and the challenges he faces because to some degree they make him who he is.  And he is beautiful just as he is.  He is wonderful and brilliant and adorable.  He is diagnosed with autism not for the sake of ease or fads or fun.  He is 1 in 54 boys in NJ for a reason.  There’s no joke about it.

We’ve Wandered to ABA.

Wandering and Autism Spectrum Disorders go hand in hand and make for one major safety issue.

When you see us at the playground, you might think I am a ‘helicopter’ parent to some degree.  I never intended to be that way– sure, I am a worry wart, but I believe in capable independent children.  Things change, though, especially when your little dude doesn’t respond to his name, use functional speech, show you things of interest or follow directions in a timely manner.  Safety issues in public places start to arise over and over again… you start to helicopter.

Most children sort of wander in a sort of rubber band pattern, stretching far enough away they turn back to a parent and return.  Our G literally tried to wander into pitch darkness at an evening hayride last Fall.  My husband was loading up the car, and I was in the middle of nursing baby G.  And things like that could happen all the time, but we spend an exorbitant amount of energy on preventing emergencies.

Because he has, as long as I can remember, been able to unlock doors and open them, and with his propensity to wander, even family parties become stressful in ways one might not expect– we spend so much time knowing where he is every minute.  “Are you with him?”  “Can you see him”  “G?  G?!”  We sound paranoid, but he hates crowds, having to engage in conversation, and he has a very poor ability to keep his sensory system regulated.  LEAVING a party quietly and wandering away would be extremely enticing to him.

And now we’re in terrible two-ville, and holy moly this is not fun.  Some of it could be residual adjustment and stress from starting his transition to preschool program… but we hear “No” at every turn, he hits me (he’s so little it doesn’t hurt), he knocks down his baby sister if she so much thinks about moving toward a toy of his preference, he throws things, he has sensory meltdowns, there are issues with self injury… ugh, it’s a mess.  He is truly, truly a sweet kid, and CAN be the best-behaved child in a room, but he is having a rough patch that is getting out of hand.  His communication limitations and very immature socio-emotional level (for his age) make for much frustration; it’s hard to balance his very diverse set of skills in my head (ya know, like he does math, but he cannot follow a direction, and can he not follow because he is having a sensory moment? a behavior problem? a processing problem? a focus problem? confusing).

It is good that he is acting out on one level because he has a sense of self, and that is great in terms of his development, but no matter how consistent I seem to be with discipline and behavior plans… it just isn’t working.

The behavior we’re facing right now makes things like wandering that much more of a concern so we are stepping up our game.  It’s time to make our home safer for him.  It’s time to pursue an intensive Applied Behavior Analysis program.  We’ve loved Floortime, and we are continuing to learn and grow our relationship through play, but we are needing something more.  So off we go down another new road… we’ll see.

The 2012 Awareness Post

I am a failed fellow.  As in, I joined the New York City Teaching Fellows program to teach special education, and then I quit.  There is truly a lot that went into my decision to leave the program including a death in the family, depression, and a myriad of other things.  But the thing I remember saying to my husband over and over as I left the program was this:

“It’s not like I don’t want to work with special needs children.  It’s that I love them all too much, and it hurts.  I just can’t handle it as a teacher.  I think I could handle it as their Mom.”

It’s interesting how life’s journey changes and curves as we grow.  I never once thought I would have a child diagnosed with autism.  I remember being pregnant and very briefly thinking about parents with special needs children and thinking, “How do they do it?” as if our child would never be a special needs child.  It wasn’t like I thought we were above it or something–nobody is ‘above’ anything; it just didn’t dawn on me that there was a chance for something in our lives to be so unique.

I look back at when I left the teaching fellowship with a sort of irony because I walked out of that opportunity and attempted to figure some things out with my professional life, and lo and behold, we found ourselves expecting our son.

It’s like I literally left teaching special needs to raise special needs.  Is it a coincidence?  Sometimes I think not.  And I think that if there is some sort of plan out there for me, and this is what I am supposed to do, then I am okay with it.  My son– and my daughter– have filled my heart with such tremendous joy, and so many amazing adventures await us.

I’m writing about all of this because of Autism Awareness Month.  I’m writing this because I think many of the people who read this blog might not even have children yet, and I want you to be aware… you could someday be a special needs parent, maybe an autism parent.  And you can be awesome at it.

 

From 1 in 150 to 1 in 88…

The CDC released new statistics on the prevelance of autism in the United States today with a significant increase in the rate.  From 1 in 150 to 1 in 88 (as high as 1 in 54 males).  Many dispute why this rise in autism diagnosis is happening; some say more people are getting diagnosed and seeking medical attention because of awareness or because the spectrum has been ‘widened’ (as in kids who would not have gotten an ASD diagnosis in the past now are).  

What I know is that our family struggles daily, sometimes hourly, sometimes by the minute, because of autism.  Our son does not have a label because it is easy or trendy.  It’s not dramatics or raw sentiments to emphasize how truly difficult it is to raise a child with autism, and it’s not ridiculous to cite how truly difficult simple life experiences can be for my son.  

We struggle, and we do not know why we do.  We have no idea why autism has struck our family, whether it is in our genetics or in the environment or something during pregnancy or birth or something he consumed or experienced or something else.  We try to guess, we try to alleviate, we try to be safer in whatever terms we can with out daughter, we try to solve challenges with therapy… we try and try and we make progress little by little.  But there needs to be more research because more and more people are being afflicted by autism, whether that means a person is experiencing autism or caring for someone with autism.

Some people perpetuate the argument that autism is simply neurodiversity, that it is something to be celebrated and enjoyed and respected.  I celebrate my son.  I enjoy him to no end.  I respect him and his needs.  I do not celebrate and enjoy autism.  Autism gets in the way of his ability to enjoy many life experiences, his ability to communicate his needs, his wants… his dreams.  He is pained by experiences and endures sensory problems that prohibit his abiltiies in multiple areas of functioning.  It makes him no less lovable than if he did not have autism, but the fact is, we have seen him regress, and we have seen him on good days and bad.  There’s something that autism does to a person and does do to my son… to me, it’s almost a verb…  I think my son thinks uniquely; he is exceptionally bright at just two years of age, but the fact is that my husband and I also come from a line of very intelligent people… I’m not even close to thinking that autism is the blessing that has given him all of his intellectual talents and gifts or his unique way of being.  

And he’s not just a quirky little nerd with a label.  Autism does truly explain his difficulties, whereas the phrase “awkwardly smart” does not.  People like my son and families like us need help.  We need research.  We need to know there is hope for the next generation of parents and children that they might be able to better understand, serve and even cure– yes, even cure (and no, not in some weird, nonproven and dangerous way)– autism.  

That’s how I feel right now.  It could change in the future, but at this moment, this is where we are reacting to these numbers.

http://www.cdc.gov/Features/CountingAutism/

http://www.autismspeaks.org/blog/2012/03/29/1-88-we-need-strategy