Wednesday, March 19, 2014

New Experiences, New Results

I live in an interfaith family.  Dad was raised in a Christian household, I was raised in a Jewish household.  Both of us feel our religious heritage is important and we look forward to sharing it with our 3 children.  However, when we got married, we agreed that we would have a dominant religion in our house and by the time Big Brother was born, we had agreed we would have a Jewish house.

That decision has had consequences.  I was concerned about how the balance would be maintained, so I held off for quite a while sending any of the kids to religious education classes.  But this year, Big Brother began Sunday School, and next year the twins will begin as well.  The rabbi has been very supportive and has copies of each of the twins' IEPs so that she can make whatever accommodations are possible to make this experience successful.

But this weekend was Purim.  This is probably the favorite Jewish holiday of most Jewish children.  It's kind of like Halloween and Christmas rolled into one.  This is the holiday where gifts are supposed to be exchanged (secular world has made this Chanukah).  Kids dress in costumes, eat sweet treats (usually in the form of cookies [known as Hamantaschen <the word literally translates to "Hamen's Hat">] which are triangular cookies filled with some type of fruit jam).  The story of Queen Esther is read and every time the name "Hamen" is mentioned all of the children make as much noise as they possibly can.  They use noisemakers as well as their own voices and bodies.  It's a very fun service, but it's easy to see it overwhelming any child, not to mention a child with sensory sensitivities as seen as those on the spectrum.

But this was the service I chose to take them both to.  Their first service.  Ever.

We had tried to prepare them.  Ballerina I wasn't very concerned about.....she may be overwhelmed at first, but would quickly recognize the fun of the activity and I expected she would be able to enjoy the experience.  Music Man, on the other hand.....he's always my loose cannon. I never know what will cause him discomfort and I can't be certain when he tells me something that he's describing his feelings or his mood accurately as he hasn't demonstrated that level of self-expression yet.  But sometimes, you just have to go for it.  So, I did.

We spent Sunday morning talking about the story.  And, every time anyone said "Hamen", we all made as much noise as possible.  He really didn't seem to get what was going on.  But we thought we had to do SOMETHING without being too obvious about the whole thing.  Then it was time to go.  The service started and many of the Sunday School children were dressed in their costumes.  My kids weren't (not sure what made me decide to not dress them for the occasion).  Then the groggers (noisemakers) were distributed.  All the kids were practicing making all the noise they could.  Still, Music Man looked intrigued but not excited.  Ballerina, on the other hand, was getting into it right from the start.  Then the story began.

Things started quietly.  Then, it happened.  "HAMEN".  And there was chaos.  Noise and screams and laughter and music.....everyone was making as much noise as was in their power to make.  And Music Man was SMILING.  He tried to spin his grogger.  When I noticed he was having problems with it mechanically, I gave him some hand-clappers and he joined right in!  And this continued, all the way to the last 5-10 minutes of the story.

Then things started to get to be a little much.  But he didn't complain.  He handed me the noisemaker (and wanted me to use it), but his hands went to cover his ears.  Whenever he heard the name "HAMEN", he looked at me and was clearly telling me that I was supposed to make the noise.  But then, when the signal for quiet was raised, he calmly told me to stop and be quiet.  He enjoyed the remainder of the service, sitting on my lap and watching.

2 years ago, this would have been a scream fest from the beginning and it wouldn't have ended until about 3 hours after the event was concluded.  How far things have come!!!!!

The service was followed by some snacks and the carnival (small stands put together by the teenagers in the youth group.  Big Brother won a cake for us to have for dinner and we headed home for lunch and to spend the rest of our Sunday doing our normal "Sunday" things.

But for dinner, when we were enjoying the cake, Music Man took a bite and said "HAMEN"!!!!  So what did we all do?


- - - - - - - - - - - - - - -

My name is Ilene.  I'm a Stay At Home Mom and I spend my time taking care of my 3 amazing children (nearly 9 year old son and 7 year old twins), my puppy, and my husband.  I also spend a lot of time working with our school's PTA where I serve as the Volunteer Coordinator and as the Special Needs Liaison to the PTA.

I have (historically) blogged regularly, but it has been AGES since I've sat down to write a blog post (this is my first post this year, period)!  But when I do, it's generally at My Family's Experience With Autism.

Please come by and read our stories.  And, hopefully, I'll be back there soon (as I greatly miss it)!

Tuesday, March 18, 2014

True Self

"The discovery of our True Self is not just a matter of chronological age. Some spiritually precocious children, usually those with a disability of some type, see through the False Self rather early, while lots of old men and old women are still dressing up what is soon going to die anyway." 
-  Richard Rohr
I read the above quotation recently and thought to myself, Yes, that's it exactly. I won't get into the finer points of what I think the False Self is or isn't, I will leave that to the experts. I am not an expert on the False Self, I only know that I have one, and I work to eradicate it daily. My son, on the other hand, the one with the list of disability acronyms as long as my arm, does not. That is not to say he can't be a giant pain-in-the-ass, he's far from a saint, but he has no ego (False Self). I'm not sure he ever really "saw through" the False Self, as much as he never developed on in the first place.
They say that ego is an "accumulated phenomenon" one attains by living with others - if a child were to live totally alone, they would not develop an ego. All this makes me wonder about the phenomenon of autism, and the "epidemic" we have going on now. I wonder how all this plays into the grand scheme of things? Does it stand to reason that those less likely to be swept up into the "norm," are actually the ones here to teach, not the other way around?

Food for thought.

- - - - - - - - - - - - - - -

Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Tuesday, March 11, 2014

Lending a Helping Hand

Today is my turn to post.  I had a really good post ready about March and Cerebral Palsy awareness month.

But yesterday another blogger reached out.  A woman with a medically fragile child is looking for answers. For support.

Sometimes we don't have all the answers. Heck, most days I can't even answer why we don't have matching socks around here.

 Today I am going to post this link. I would encourage you to read it and share it. I know, I know. If there is one thing I dislike is being asked to share.  And then feel guilty because small zebras in Africa suffered because of you being a small minded person  and not sharing their plight.  But I promise no zebras will come after you and neither will I:).  

If you know anyone who can help this family or have any answers for them you can contact them through the blog link or you can find their face book

You can find the blog link here.  The blog is called "Cause Caden Can if you have trouble with the links. I hope that you take a few minutes and read about this woman's journey. Having a daughter with so many of those medical conditions my heart goes out to her and I hope that somewhere there are answers to her many questions.  Because alone we can only do so much, but together we are an amazing group of parents and we can help each other stand strong.

- - - - - - - - - - - - - - -

Amy Fields is a mother to two special and amazing kiddos!  You can follow her at her blog Many Kinds of Families.

Sunday, March 2, 2014

Bringing up Baby

When R was a little, he had a onesie with a sign “If only they would stay little”.

This is something that most mothers say.

Little was I to know how much he would like staying little and, if I am to be honest,  how much we would enjoy this childhood unfolding in slow motion

At 9, he has still retain such sweet innocent charm – that people often mistake him for a much younger child

My sister, on skype, will ask him to “fulfill all his baby jobs and give her flying kisses”, a nurse will giggle indulgently when she sees that R cannot blow his nose, someone will bump into him at the gym and instead of saying “Excuse me” they will give him a hug instead. 

People coo at him, instead of talk to him. He gets more spontaneous hugs and kisses than any 9 year old I know.

In fact , DH is probably the only one, in all of R's world that pushes him to act his age.

Many articles that adult auties write about things they wish we knew about them says how much they hated being “infantilized”.

But R LOVES being baby - in his self-concept- he sees himself as a small child. And he likes it that way

The other day he told me that he was a toddler.

Most neurotypicals have the peer pressure/natural incentive to start become more independent.

I remember my niece was barely talking and all she wanted to do was do things by herself, when she stopped wanting to be in our laps.

But it’s time to gently nudge him along on this journey.

To nudge myself along as well.

For its not just that I enjoy my sweet child so very much, it’s also that he was so ill for so long.

It’s made me want to be an armor around him – so defenseless and fragile he seems to me.

But that crisis has become part of our normal and we are no longer in that day-to -day mindset of urgency

Its time for this baby  and this baby-mama to grow up

- - - - - - - - - - - - - - -

Floortime lite mama writes about love, life and autism at

Saturday, March 1, 2014

“Who You Gonna Call? When Family Caregivers get hit on all sides”

- - - - - - - - - - - - - - -

Family caregivers of children with special needs may feel overwhelmed when dealing with multiple “systems.”  This could include special education, healthcare, family support services etc.  Here are some common issues that may arise for family caregivers and resources to help.


The teacher calls regarding your child’s challenging behavior.  Your case manager calls and says they may need to change your child’s placement.

Most parents don’t know that they are part of the IEP team that makes educational decisions, including IEP development and placement. The Individuals with Disabilities Education Act (IDEA-federal special education law) states alternate placement only occurs if appropriate supports and services are unsuccessful.  For challenging behaviors, a Functional Behavioral Assessment (FBA) will show why the child is behaving in a certain way and a Manifestation Determination must be done to decide if the behavior is due to the disability before placement is changed.  Children are entitled to receive a Free, Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE) as close to home as possible.   This could range from having an aide, to resource rooms, to a separate classroom going from least first to more restrictive.  Families can get free help from their Parent Training and Information Center (PTI) - see resources below.



Your child is turned down for SSI/Medicaid.  The insurance company won’t pay for therapy your child needs.  Your home nursing hours are being cut.

Family Caregivers should know that they can appeal when their child is denied a service, therapy, or any changes.  Only 1/3 of families appeal claims even though half of the time it’s turned around in their favor on first appeal.  The best way is to send an appeal with a doctor’s note of why this is needed in writing, certified/return receipt, and keep copies to follow-up.   SSI and Medicaid can also be appealed usually by submitting additional information though families may need free advocates to help if this doesn’t work.  If your child’s condition hasn’t changed, there should not be a cut in hours and if they have more medical issues, hours should be increased.  Parents can get help from their state affiliate of Family Voices and/or their Family-to-Family Health Information Center-see resources below.

It is also important for families to remember that mental health falls under healthcare as well as physical health.  Caregivers should know that mental health issues are biologically based and there is no shame/blame as it is just like a diabetic who needs insulin.  The organ affected just happens to be the brain which symptoms manifest as behavior.  In fact, there is now mental health parity (treatment for mental illness is equal to available care for physical conditions.) The Affordable Care Act (ACA) should make it easier for families to access mental health as one of the 10 “Essential Health Benefits (EHBs).”  Families can get help with mental health issues from the Center for Social & Emotional Foundations of Learning (CSEFL), Federation of Families for Children’s Mental Health (FFCMH), or the National Alliance on Mental Illness (NAMI) - see resources below.

Family Support

The respite provider lets you know that they’re discontinuing their service.  The state department of developmental disabilities says that there is no funding for services.  You’re simply overwhelmed with dealing with your child’s condition.

There are many services considered “family support” such as respite, home modification, behaviorists, etc.  For parents of children with developmental disabilities there are even Governor’s Councils in each state.  Families may have to get creative in finding solutions.  For example, for respite families may be able to “self hire” and get reimbursed by an agency if their current agency is no longer providing services.  Parents may decide that their child no longer needs one service and that may free up funding for another.  Families may just need to talk to another trained volunteer parent of a child with the same condition to see what they did in the same situation.  Families can get help from the Council on Developmental Disabilities and all families (not just DD) can get help from Parent-to-Parent – see resources below.


Caregivers of children with disabilities need to know that they don’t have to “take no for an answer.”  There are ways to advocate to get the services their child needs, and organizations willing to help them. 


Resources for Family Caregivers of Children with Special Needs:

Parent Training & Information Centers
Family Voices/Family-to-Family Health Information Centers
Mental Health
Center for Social & Emotional Foundations for Learning (young children)

Federation of Families for Children’s Mental Health
National Alliance on Mental Illness
Family Support
Councils on Developmental Disabilities
Remain Hopeful,
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network in a volunteer capacity at or FB