Five Year Anniversary of D (diagnosis) Day

It's been five years since I sat with Turbo in the neurologists office and got what I knew was coming: an autism diagnosis.


I remember the doctor looking at me expecting me to fall in the floor sobbing uncontrollably.  I didn't cry, I knew it was autism.  I was numb, though, as he rattled off the speech I am sure he had given to so many parents before me.  Two words snapped me out of my stupor: dog training.  He said we should seek out dog training (which is how referred to Applied Behavioral Analysis ABA), find a marriage counselor (because more then 80% of couples whose child is diagnosed with autism divorce), and we should consider residential for Turbo so we could have a "normal" life (really, I thought, he's only 26 months old).



The next months pass in a blur of learning special needs buzz words like: special diets, biomed, ABA, floor time, IFSP, FAPE, etc, etc, etc.  It was totally overwhelming and emotionally exhausting. We didn't go out and we had no one over.  I had no time to socialize my baby needed me.  He was depending on me to find therapists, an advocate, a school, specialists. There was no time to waste.  He needed early intervention and I had so much to learn.



Even now writing this the emotions are so raw.  I was such a mess a wild eyed "crazy lady."  I wasn't sleeping.  I was eight months pregnant with my daughter and would wake up with cold sweats in the middle of the night wondering what will happen to him if something happens to me.  No one will want him they'll just stick him in a home somewhere.  What am I going to do?  Will this new baby be autistic too?  How can we afford to pay for all of this?  I just lost it I couldn't breathe anymore.



Friends we had known for years started melting away.  I don't think they could handle the reality of it all.  It was hard to watch Turbo setting for hours banging his little head against the wall and screaming when I tried to hold him.  I had lost him.  The toddler who a few months earlier was laughing, babbling, and playing with his brothers was gone.  It was like he died and I didn't know how to process it.   He was right in front of me, yet he wasn't there at all.




We bought a house and moved shortly after Princess Flowers was born.  I had such high expectations for our new neighborhood.  Tons of kids on the block, most of them my boys' age.  We invited everyone on the block for Sabbath meals one family at a time.  We wanted them to know that we were excited to be there.  We gave them open invitations to our home because at that time Turbo could not go out to someone else's home.  He needed his own space, his toys, or he would lose it. A non profit in town actually bought and assembled a beautiful swing set in our backyard in hopes it would be a nice place the kids on the block could play.



No one ever came over.  When we called for Sabbath meals people were busy, they would get back to us, they never did.



One Friday night just after candelighting I heard a knock on my door.  Sabbath had just begun and I
had the boys in the living room dancing and singing Leha Dodi ( come my beloved ), a poem set to many melodies welcoming the Sabbath.  When I went to the door there stood my neighbor from across the street. She had not spoken to me in months.  I would see her everyone morning as I was leaving for carpool and would say, "good morning" to which I received no reply.  I was very surprised to see her there.


She got right down to business.  The alarm on their van was going off could he, as she points to Turbo, come and turn it off for us.  For those of you that are not Jewish or not observant she was asking for my son to break the Sabbath. She was asking  me to allow him to perform a forbidden activity because he was cognitively impaired -- so what difference did it make. She was, in affect, saying, "he doesn't matter."


I stood frozen for a moment.  I mean this is the daughter of a well respected rebbe at a local Jewish School, her freakin' husband is a rabbi/teacher/tutor for goodness sake.  She didn't understand why I was so upset. Turbo is not obligated to keep Shabbos -- he's handicapped.  So, stick to the letter of the law but you have no compassion for the fact you just flattened me emotionally.


I slammed the door in her face, pushed myself to continue singing with the boys, and cried myself to sleep that night.



Monday afternoon Turbo came home from school and started playing in the front yard running off
some energy after his long bus ride.  He had not spoke since his diagnosis, not a word, no hugs , no nothing.  I was setting on the front porch lost in my thoughts when I hear a familiar voice, a voice I hadn't heard in a long while, say "Hi! I said Hi!"


I look up to see Turbo standing at the edge of our front lawn waiving furiously at the horrible neighbor who had literally devastated my world just a couple days before. She stared back at him looking totally like a deer in headlights and forced a wave back to him. I laughed so hard I fell off my chair!!!!!!  Turbo ran over to me grabbed me around the neck and said, "love you!"

He was letting her and me know he was aware and paying attention and that he mattered!



Years gave gone by since that day.  Turbo is now in an awesome school.  He has amazing, caring therapists, teachers, and advocate.  He has an amazing little boy who has worked so hard and has overcome so much and has much left to overcome.  He defies specialists everyday who said he would never speak or use the bathroom on his own.

In your face.


He is loving and wants to be loved.  Slowly, day by day coming back to us.

To parents reading this who have just received a diagnosis.


There is hope!

Please remember this autism thing is a marathon not a sprint.  Don't beat yourself up for what you didn't know.  Surround yourself with good people.  Find a support group -- in person and not just one online.  A real honest to goodness face to face with people who understand and know what it is to have a special needs child.  People who will celebrate the victories with you and give you a hug and a tissue when you've had a crappy day. To all my fellow autism and special needs parents -- Chazak!  Chazak Ve'ematz!  Be strong! Be strong and have courage!

Homeschooling? Are you serious?

I pulled Merlin and Wild Krat from a private, religious dayschool two and half years ago because of bullying.  Merlin was being called names and verbally abused by teachers and Wild Krat was being physically abused by students and verbally abused my teachers.  Let this be a wake up call to parents ......my kids didn't say a word for almost a year about the abuse.  I learned of the abuse only after another student at the school who had witnessed all of this stepped forward.  When administration and school board where taken to task I was shocked at their unwillingness to insure my children's safety and to assure me it would never happen again.  When it become apparent that the school was not taking the bullying seriously we felt a difficult decision had to be made.  HOMESCHOOLING!!!!!  I literally had an anxiety attack just thinking about it! I'm not a teacher let alone a special educator how am I going to pull this off!  We are Orthodox Jews and truth be told our community does not do "out of the box" well.  No one I knew homeschooled. I didn't want my children to become social pariahs.  Homeschooling had never been on my radar but in truth after weighing all the options it was our best one.

 Baltimore is blessed with many wonderful private schools for children with different special needs.  Unfortunately, those schools come with a hefty price tag.  In most cases upwards of $30k a year.  In my experience many do not have aide for new, incoming families.  Since we do not have a money tree in the backyard that wasn't going to happen.  I mean I guess I could have sold a kidney but that would have only paid for one year.

 Thru the IEP process we learned the public schools in the city only offered remediation for reading and math in small groups. The boys would be mainstreamed for all other subjects.  After consulting with the boy's therapists, It became clear that it would not be intense enough remediation for them to make meaningful progress.  It would be a painfully slow process most likely with the need for us to have them tutored privately after school.  My boys were already frustrated.  Who wants to go to school six hours a day and then set with a tutor for another hour after that. In our opinion and that of our private therapists the placement the school system was recommending was not appropriate but we knew they would not see things that way.

At the time we were already in a fight with the school system regarding Turbo's placement.  It was exhausting and expensive since this type of thing requires advocates, expert witnesses, private assessments, and of course an attorney.  We knew it would be an uphill battle and one we were not prepared to fund at the time.  So like it or not homeschooling was the plan.

Last year we used a very popular and well respected boxed curriculum.  Boxed curriculum is exactly what it sounds like; everything thing you need from teaching materials, student materials, and supplies can be found in the box they send.  It was all put together and all I had to do was follow the instructions.  For us this was a complete disaster!  The boys found the material boring and math in particular was a nightmare (it followed common core .....oye vey!).   I cried, they cried and I wondered what the hell I had been thinking to take this on,  was I insane?  We ended the year a month early and I knew I had a lot of research to do.  I changed EVERYTHING!  Curriculum, schedule, everything!

I saw a great quote a while back, "It's never the child, it's the teaching."  So very true!  After turning everything completely upside down we found our sweet spot and this year could not have gone better!   First, we found a wonderful umbrella group with a knowledgable director.  Umbrella groups are organizations who do all the tedious record keeping for you so you do not have do deal with the local school system.   The director for our umbrella group, Wendy, helped me so much.  She helped me calm down and sort out all of my options.  Wendy also told us about the Baltimore  Homeschooling Community Center.  BHCC offered co-op classes in
many subjects and a central place for like minded families to spend time together.  My kids took three classes there this year.

 We also picked knew curriculum after I found my angel, Ms. R, who is a SLP and reading tutor but sooooo much more.  Ms. R is one of those people who is passionate about what they do!  She herself is dyslexic and took a personal interest in helping the boys be successful and confident. She spends time working with the boys, obviously, but has also has spent her own time tutoring and guiding me on how to present material so it works for my kids.  The boys have made so much progress this year and I am so grateful!

In future blogs we will discuss more details about our homeschooling journeys.  I do want other families out there to know that homeschool can be a wonderful option for your child!  Someone recently asked me what the best part about homeschooling is.  My reply was that my kids got their sparkle back!  They love learning and realize the world is their oyster if they are willing to work hard!  Their diagnosis does not define them. Oh and like Merlin said...."homeschooling means no bullies!"

Meet the family

Hello, and welcome to Speaking for Moses!

Please allow me to introduce myself.  My name is Leah and thru this blog you will meet my husband and our four amazing kiddos.  Three of our four children have special needs.  To start with we have my eldest, Merlin the Wizard age 10, who is diagnosed with ADHD. Merlin, obviously loves anything magic related, taekwando, making his own movies, and science.

Wild Krat, my middle son age 8, is diagnosed with severe dyslexia and dysgraphia.  He loves all animals and wants to live on a farm.  He is a budding cartoonist and has an amazing sense of humor.

My youngest son age 7, Turbo, is diagnosed with severe autism. Turbo is a powerhouse!  He is always on the go! Even though he does not have many words he loves to laugh, is a cuddle monster, and loves all things slide related.  If he can't find one he'll make one.

Last but not least there is our daughter, Princess Flowers age 4, who is nuero typical.  She is a girly girly who loves to draw, the color pink and American Girl dolls.

My husband and I started this blog to share our experiences on the front lines with the hope that it will help another parent just beginning their journey know they are not alone.  We are not lawyers, doctors, or specialists.  We are just proactive parents doing all they can to support and provide what our children need.

In this blog we will discuss IEP, biomed, homeschooling (yes, I said homeschooling), advocacy, meds, grants, cognitive behavioral therapy, poop (a lot of poop talk), isolation, respite, and hope.  I give fair warning I pull no punches.  Authenticity is very important to me.  I don't sugar coat the truth, so if you are looking for nothing but flowery words of inspiration you are in the wrong place.

There are defiantly gifts that come with being the parent of a special needs child but many days it feels like a one way ticket to the Hotel Rawanda and I believe we need to be able to discuss both openly and honestly.

All are welcome here!

Please, be respectful of everyone's opinion even if you don't agree you might learn something.  Let's get real about special needs and see if we can help each other and ourselves!

Why the name Speaking for Moses for this blog?

As a historical and religious figure, Moses is known as "The Law Giver," the scribe of the Five Books/Torah, a work hailed, by some as, a perfect work, making him the father of all prophets for having spoken with G-d (figuratively) "face to face."  When visiting the United States Supreme Court  you will see Moses in relief standing at the front of the line of other great historical law givers.

Yet, when you think about it, Moses was flawed.  He had a severe speech impediment.  One source says it was the result of an angel trying to save his life.  So, in a sense, his imperfection was actually from G-d.  Why would G-d do such a thing?

For a moment think about all the times you may have heard of a clergyman saying something like, "children are afflicted with autism because...(insert whatever foolish comment you like).  Obvious question--so, you know the thoughts of an infinite being? Whatever the reason for a challenge a child may have, it is certainly not intended as a punishment to the child.

In Moses' case, for those of you who accept, to whatever degree, sources outside the Old Testament, it was a result of an angel pushing Moses' hand to grab fiery coals instead of jewels when Pharoh tested the intentions of the young Moses.  As a result, he put his burnt fingers to his tongue in an attempt to relieve the pain.  Instead, he burnt his tongue.  From that moment on, he speech was flawed.

So, why was such a work as the Torah transmitted through a person of flawed speech whose best known trait is that of supreme humility?

After thinking about it for a long while, it seems to be this:  Before you think only an innately superior person can achieve greatness -- think again.  Worse yet, Moses at certain points, must rely on his brother Aaron, to communicate G-d's wishes.  In the end, his flaw does nothing to prevent him from achieving greatness.  In fact, he achieves greatness precisely because he is aware he is a flawed human being.

Moses takes all the excuses away.  You want to be great?  And you would be if only for (insert whatever excuse you care to insert here)?  No excuses.

Lesson:  Keep your eyes on the ones whom you have judged to be lesser creations, lesser beings.  It is they who shall rise to greatness.  This a recurring theme overlooked by most.

Don't believe me?  Here is one more fella for you.

There is this boy. He goes out in the fields to tend to animals, to sing and play a music, to get away from people so he can be spiritual (You know what I mean, man).  Sounds like the boy might be on the autism spectrum, you say?  He is so detached from his family his father forgets he even exists when a visitor to the home comes over wanting to meet all the children.

Got the picture?  Not a very good one, you may agree.

Well, this is one way of looking at David, son of Jesse, King, prophet, poet, musician, and worrier.

All special needs children have the potential for greatness.  They just need someone to speak for them  once in a while.

So, here we go.  We, together, are Speaking for Moses!

More to come...