Ethan Starts a New School

I love my daycare!

This Monday June 16th I had to move Ethan to a new daycare. This was a really difficult decision for me.  Ethan was already in a good daycare. They loved Ethan and he absolutely loved his teachers, but Ethan is in a really precarious stage of his little delayed development. He is cognitively not very behind his peers. In fact, I’m not even sure he is that behind at all – but is hindered by his lack of gross motor skills. I’m sure kids develop quicker when they can directly influence their environment.

“The door was open and then I closed it. The pile was neatly stacked and then I knocked it over. The floor was dry and then I poured my milk over it.” And I’m sure they develop quicker when they can feel consequences, “I touched this sharp object and it hurt. I knocked over that pile and mom got upset.”

Ethan has not had the opportunity to do either of the above – influence his environment or feel direct consequences in doing so.  He has simply maintained in his cushy life contently surrounded by the age appropriate items we put in his direct circumference. We try as often as we can to afford him experiences that other children have, things like walkers, push carts, etc. have been instrumental in his growth.

Ethan's little scooter - pulling
Mommy's cards down

He will also need speech therapy, so he may appear to be more cognitively delayed because he cannot communicate the same way that a child his age normally would. He makes cute, and sometimes not so cute, sounds. He babbles endlessly.

The point of all this supposition is that I really need to Ethan to be constantly surrounded by age appropriate activities – coloring, reading, blocks, shapes, baby puzzles, colors, etc. I need to him be standing as often as possible, cruising around, pulling things down, wreaking havoc and expanding his mini sphere of influence. This kid has no fear, I want to take advantage of that and throw as many challenges his way as possible.

So – what does this have to do with this daycare?

In Ethan’s current daycare there are two sections: Infant and Wobblers. Infants are babies 6 weeks to one year. After one year and once they can walk well, they transition to the Wobblers section, where they stay until 2 years old.  In the infant section there are many of the developmentally appropriate toys for babies – they spin, light up, make sounds, etc. However, in the Wobbler section they color, read books, have more buildings block type toys.

Time for a change

As we all know Ethan can’t walk – far from it. I pushed and pushed for Ethan to be moved to the Wobblers side. And then one day I simply went over during reading hour and set him right down on the floor to participate with the other kids. What I saw broke my heart, and kind of scared me – they all descended on him like a fun new toy. They saw him as a “baby” and they wanted to touch him, hold him, push him a little, “handle” him. Within seconds he was overwhelmed and started to cry. The teacher immediately picked him up, put him on her lap and kept reading. Then he was fine. But I knew we needed to make a change. He needed more mental stimulation than the infant section, where he spent a great deal of time playing with infant type toys by himself. But he was clearly too delayed for the Wobbler section, where others kids saw him as a baby even though some were right in his age group.

Where’s he going?

He started at a Montessori school that has a more tiered structure: Infants section until 14 months, Wobblers from 14-18 months, and Toddlers from 18 months -3 years. This school has clear goals to meet before any one kid is allowed to transition. They must be able to:

1. Walk on their own
2. Eat with a spoon (Ethan is actually getting much better at this)
3. Drink from a sippy cup (we’re about to make that transition soon)

Other things I like about this school:

Evening walk with my
parents and doggie!

• They will also teach Ethan sign language and of course, assist in potty training.
• It’s Montessori they will work directly within Ethan’s range of development, continuing to push him
• What I like most about this school is that because the goals are so defined, they work with each child to help them achieve those goals so they can move on to the next age group.

He is still starting in the infant section, and there is a chance Ethan may never be a wobbler – there is a chance by the time he walks, talks and eat with a spoon he’ll be over 18 months, even over 20 months, and will move straight to the Toddlers section.

Managing My Own Expectations

My boys walking
together

I’m nervous mostly because I’m afraid that I will put so much faith in this place that I will just expect to pick him up from school one day next month and he’ll come running over to me on his own two legs and shout “Mommy, I had such a wonderful day in class today – we read a book about airplanes!” And when he doesn’t I’ll be disappointed.

This place is obviously not a cure. But I do believe that every little bit helps. And while I loved his old school and would recommend them to anyone with a non-developmentally challenged child, I am counting on the individualized attention at this new school to help him increase his sphere of influence, challenge him and finally unleash the little troublemaker that I know is in there.

Ethan's May Milestones

I love horses now!

May was a great month for mommy and daddy – Ethan continues to engage with us more and more. It feels so, so, so good!

May Milestones

• Waves hi and bye – we’ve only been actually trying this for a month or so, he picked this up pretty quickly :-)

  

  I can reach!

• Reaching over his head with both hands – we’ve  been working on this since the start of physical therapy. This has always been particularly hard for Ethan.
• Reaching out for Mom and Dad specifically – We’ve been working on this since he was born!
• Successfully put shape blocks into the corresponding cutout  - at least 4 months of dedicated weekly work
• Cruised all around the coffee table by himself – 8 months of physical therapy
• He spins himself around while sitting - this is huge for us because any time that Ethan learns he can control his own direction to reach toys around him he becomes more motivated to work harder. See the video below! 
• Successfully eating with a spoon and putting the spoon back onto the plate (he can’t scoop his own food just yet) – we’ve been working on this for a few months now.
• He rode a horse! This was random and fun – he loved it. We’ll definitely get him up on a horse when he’s older
• And my personal favorite – he gives hugs now!!!!! We weren’t even practicing this per se, just one day I was hugging him as I always do and he hugged me back. Swoon!

Thanks for horsey ride Jr. Blind!

Thank you to our wonderful physical therapists and to the director of our preschool who keeps trying to keep him engaged during the day.  And thank you to Terry – who keeps me sane during all of this!

Owning the Milestones

Family fun day
at the Jr. Blind camp

It is a parent’s God-given right, neigh, duty to watch, record, celebrate, and unfortunately fret over their children’s milestones as they grow. Some little ones are right on schedule – a parent will read in a book that their baby should start babbling on a given week, and presto! The baby starts babbling. Sometimes kids are little behind and sometimes they shoot out ahead of the pack. In the end, they basically all are able to walk, talk, use a potty, stack blocks, drink out of a sippy cup and eat with a spoon.

Unless… you have a special needs child. First off you can just throw the existing milestone chart right out the window. Adios! Those are no good to you now. You have to create your own sets of milestones now – some are created by your PT, some are created by your own research and seeing what other kids with similar diagnosis can do, and some just by getting to know your baby and knowing what he or she can accomplish and when.

Now the normal milestones are not forced upon a child, they are generated based on the idea that all things being equal most children will accomplish these tasks during this range of time. It’s a little different with a special needs child. The milestones, while not “forced” per se, are definitely pushed ahead by loads of hands on exercise and instruction. That’s how I coined the term – “Own (or co-own) the Milestones”. As a parent of a special needs child, you co-own every milestone that your child meets.

I want to state that I am in no way taking away the important influence that parents have over so-called “normal” children. When your child hits those milestones it’s definitely in great part due to the environment you’ve created, the practice you've done, the love you give, and, of course, the genes you’ve bestowed on your little one.

With a special needs child however, there are usually hundreds of hours of work and multiple people behind getting your child to accomplish just one of the tasks on that milestone list – usually months and months after other kids in his age range. Here are some examples:

• Ethan couldn’t sit up without falling over until he was over 10 months old – 5 months of physical therapy
• Ethan couldn’t reach out his arms fully extended until he was 14 months old – 9 months of physical therapy
• Ethan didn’t begin cruising on his own until he was 13 months old – 8 months of physical therapy
• Ethan has not yet taken a single step without the aid of a push cart or a person. Just to get him to take a single step with a push cart took 8 months of physical therapy.
• Ethan has not crawled one single crawl on his own ever… we’re at 10 months of physical therapy and he just flat refuses to do it.
• Ethan cannot transition from one movement to another – sitting to kneeling, kneeling to crawling, kneeling to standing, standing to sitting (he just falls backwards), kneeling back to sitting. He needs to be physically moved from one to the other – 10 months of physical therapy and counting....

Congratulation to
us all!

So – when Ethan meets one of these milestones, I not only celebrate his achievement, I congratulate myself and I congratulate Terry on our achievement.  I also thank our parents, I thank his teachers and mostly I thank his Physical Therapists. It’s not a milestone Ethan has met, it’s a milestone we all busted our buns to meet together. We co-own it.

Because of this I am now going to do a monthly blog called Ethan’s Monthly Milestones, outlining the milestone achieved, the amount of time we’ve been working on it, the normal milestone date, the date we were aiming for, and the date accomplished. Also, we will give the appropriate thank yous to everyone who helped him accomplish his milestones.

And to end this I will thank everyone who keeps reading these blogs. You give me my own set of milestones to achieve! J

Ethan Turns a Corner

Who can resist this
smile?!

I have a list of on-going potential blog posts, and one of them was going to be called, “What I Miss the Most.” It was going to talk about all of the things I see my friends beautiful babies doing that I felt I was missing out on. What kinds of things you may ask?

Most things centralized around connecting and the necessity of engagement. The physical delays we had made peace with and we were working through. But I was not prepared for the emotional disconnection. Ethan wouldn’t make eye contact, he wouldn’t smile or reach for us, he wouldn’t respond to his name, he wouldn’t repeat sounds, or high five, or blow a kiss, or a reach for his nose. He wouldn’t hand toys back and forth, or hand us a book or really engage us in any other activity other than feeding him. He wasn’t interested in toys out of his reach, or really even seem to understand that all he had to do was roll, crawl, reach, etc. He was content alone in his small, precise world. He was so Zen he was almost transcendent.

And I was sad. Terry and I began to fear that there was more to this saga. Maybe Ethan had Autism. Maybe he was more cognitively delayed than we had otherwise believed.  But I kept repeating the games over and over. I kept pointing to my nose, offering my hand in high five, showing him how to get that which was out of his reach; we kept reading him books, singing him songs, and chatting away with him. We started him in music class and signed up for another day of physical therapy every week. 

The director of our physical therapist office gave us an analogy – she said kids are like water pumps. You pump, and pump, and pump and nothing seems to be happening. But behind the scenes, the water is rising and rising. Then, all of a sudden, it comes rushing out! Well, I’m happy to report Ethan’s cup runneth over!

It was literally like someone walked passed him and said, “Hey, someone forgot to the flip this kid's “On”

Ethan moving and grooving
in Physical Therapy

switch.” He went from being some Buddhist monk to a playful little boy. He suddenly did everything all at once – he high-fived and reached for my nose. He smiled and reached for Terry and I. He would pass toys back and forth, even rolling a back and forth to me. He would repeat some sounds (not a lot… but some!). He started getting very particular about games he wanted to play or toys he wanted to play with. He started walking in his walker and having a clear sense of where he wanted to go. He began exploring – opening and closing cabinet doors, pulling towels from racks, completely torturing the dog by following him around in his obnoxious car-shaped walker.  Don’t get me wrong, the kid is still far more content and Zen than just about any other baby I know – but now he’s scrupulous, curious and animated… 

I was right here all
along, Mom!

It’s like a giant clamp just released itself from my heart. It’s like I can finally breathe.  My son is in there. And I can see he’s been in there and now he’s forcing this giant personality of his out. 

So this is a message not just for parents of special needs kids, but all parents. Keep priming the pump. Repetition. Persistence. Patience. Love...   Rinse, lather, repeat… 

Being a Working Mom with a Special Needs Child

Snuggling with my baby
after work

Being a mom is just plain hard. Being a full time working mom with a special needs kid is really hard. But being the bread-winning working mom with a special needs kid is insane.I don’t want to send the wrong message with this blog post, this is not to throw a pity party or attempt to impress – this is just to try and give a voice to all moms of special needs kids (and really all moms), what we do is hard... really hard and we all deserve love, credit and kudos!

As for my job - I'm in a demanding role. I run a multi-million dollar digital catalog for a high profile department of one of the largest automotive manufacturers in the world. It’s a stressful job and I have very little margin for error. Just as I was finally getting the diagnosis of OMA, and then Hypotonia, and finally Joubert, we were launching two of our flagship products. I had to compartmentalize. I had to bring my A-Game regardless of how much I was falling apart inside. I would have to hide and cry in the bathroom, pull myself together, and then be back in a meeting 10 minutes later (blaming my allergies). 

And Dads... I don't want to discount Dads! Terry was bartending at two different venues and going to school full time during all of this craziness. He managed to get into all of the four colleges he applied to, while working, sometimes up to 7 nights per week, and dealing with his son’s diagnosis as well.

Ethan on a
rocking horse

Terry working nights was a blessing on the one hand, but its been hard on us too. Some weeks we were like ships passing in the night. He would be with the baby half the day, then drop him at daycare and go to work until midnight. I would work all day, pick the baby up from daycare and then do the night routine.

So what’s a day in the life like? This is our life a couple of days a week - I'm sure you can relate!

• At about 6:00am Terry and I both get up with the baby and split the morning routine: changing, feeding, dressing, packing, and walking the dog
• I leave at 7:30 and take Ethan to Physical therapy from 8 – 9am; Terry goes to class
• Take Ethan to daycare and get to work around 10am
• Work through lunch to make up for arriving late, then leave work at around 5:15p; Terry heads to work after school
• Pick up the baby from daycare at 5:55pm, get home at 6:15pm
• Walk the dog with the Ethan, feed him his dinner and give him his asthma medicine
• Do exercises with him for 40 minutes – not just exercises but problem solving, fine motor skills, drawing, music, etc. Anything to make sure we close the gap on his delays!
• Give him a bath and let him free play while I cook dinner
• Feed Ethan his night night bottle, nebulize him with Albuterol (on nights when he’s raspy) and put him to bed
• Eat my own dinner and watch TV for 1 hour
• Work for an hour (either work on job related stuff, or budgets, or paying bills, or organizing receipts, or this blog, etc.)
• Clean the house (dishes, baby bottles/sippy cups, toys, mail/files, etc.) and prep for the next day (lunches, daycare necessities, etc.)
• Read for 30 minutes and sleep (by now it’s about midnight)
• Terry gets home

49ers Win!

Not every day is this hard – sometimes it’s easier…  and sometimes it’s even harder. I mean, just his doctors appointments alone! Our son’s file at the pediatrician is literally 2.5 inches thick already. I think I was 10 years old before mine was that thick! Do you know how many different doctor’s appointments and referrals you need to get a file that thick?!

 But these days go at the speed of light and you don’t even time to think – you just look back at the end of the week or month and think, "Sheesh – thank goodness breathing is involuntary or I might not have had time to take a single breath!”

So again,  to all moms, working moms, breadwinning moms, and working moms (and dads!) of special needs kids – I feel you! I empathize. I understand. You are all my heroes and my mentors. I toast to all of you!

Response from the NICU Doctor

Thank you to everyone
at the Children's Hospital!

This will be a super short blog - we heard back from the NICU Doctor!

She thanked us and asked us if she could pass the letter around to her team members at the NICU. Of course we said yes! I was just very happy the letter was well received and we could close the loop on that crazy first chapter of Ethan's little life.

****

Hi!

I would be elated for you to share this with the health team. We loved everyone who worked with us during that time. In the grand scheme Ethan's stay in the NICU was so short, but to us it felt pretty long and stressful. However, we learned so much from your team - certainly more than we would have if we had just brought Ethan home a day or two after he was born. Considering it was our first, we were pretty prepared by the time we brought him home. Not necessarily prepared for Joubert, but for feeding, fussiness and changing we definitely had a leg up.

Thank you again!

~Katrina

The Blog Gets a New Voice

Ethan's SoCal Birthday!

Hello to everyone who reads this blog - you mean the world to me. You help to give me an outlet for a lot of emotion that may otherwise remain unprocessed. You give me motivation to organize these emotions and really turn them into action plans. It seems silly that a blog would be responsible for all that – but it’s true. Because I’ve made this journey so very public I feel the need to maintain composure, a positive attitude and clear forward direction. And because I feel the need to do it – I actually get it done. So thank you – truly, I thank you!

So – now it was time to put the old voice of the blog to bed. This is no longer “The Story of How My Ex Agreed to Get Me Pregnant.” It’s now a story of how Ethan is going kick Joubert’s butt! It’s now a story about overcoming some pretty unique obstacles… and some fairly common obstacles too!  Really – it’s a story about motivation, perseverance, triumph and love.

Plus, it’s kind of weird when you meet someone who also has a special needs kid and they’re like, “Oh – what’s your blogs name?!” And you pause before having to explain the reason the name of the blog means nothing about Joubert, or specials needs…

So the blog gets a new name… and new description and new URL!

URL Change

First the URL – changing it from "bestfriendandbabydaddy.blogspot.com”  to “ethanconquersjoubert.blogspot.com”. I feel like that this is a pretty self-explanatory change.

Updated Description

Ethan's NorCal Party

Next – I changed the description. This is now “The story of how a thirty-something single gal entered into a co-parenting agreement to have a baby with her ex-boyfriend, and then they got back together, and then had a baby with Joubert Syndrome, an incredibly rare neurological genetic disorder. Between being a new couple, new parents, and all that comes with a special needs baby, see how they're coping today!” Again – pretty self-explanatory.

New Name 

So now we need a new name. Yikes – so many good names were already taken! How to sum up not just Ethan and Joubert, but the journey of Terry and I as well. As rare as Joubert is, so is the arc of how all of us ended up a family. I was pondering names, thinking of quotes, reviewing other blogs, searching for inspiration and I remembered a song I wrote some years back – before Terry and I even became a couple the first time. The chorus goes: There’s laughter in the learning | as you choose where to go | and learning is accepting | there’s no straight and simple road. | Take hindsight for what it is | adjust and realign | Take life as it comes | and take your time.

Terry and I are on our much
needed weekend getaway

And suddenly it hit me – No Straight and Simple Road

I ran it by Terry and he agreed – it encompasses all that Ethan has gone through and will overcome, as well as everything Terry and I have been through and will overcome. So there you have it. There are long roads, windy roads, fun roads, painful roads, fast roads, beautiful roads, and crazy roads… but for me, for Terry and for Ethan – there is no straight and simple road.

We love you for continuing on in this next leg of our journey. Thank you – we love you!