Manners

"More"

"Please"

He might be a J-man of few words, but he is polite!!!

Sign #9 for those on sign watch.

Pia

Signs, Signs, Everywhere are Signs....

This is what happens when J-man is

left alone with chips

We have had a mini "sign explosion" at our house.

For a year-plus we slaved at the sign "more".

This June, J-man got "More". A few weeks later, "Go".

And now I can say that we have eight signs. EIGHT. Might not seem like a lot to you, but I feel like we are at the start of something wonderful.

Our eight signs are:

More

Go

Open

Ball

Fish (don't ask me why... he likes fish)

Eat (uses only sporadically, but I have seen it!)

Help

Candy (got this one immediately)

I can see a few more emerging, but I am holding off on calling those official. Not all of the signs are textbook, but they are approximations... and consistent. And he is spontaneous with them. And today he even combined two signs together (more fish)...

I am going to the library to rent Signing Time DVD so I can learn more signs to teach him.

I love this.

Pia

Giving him clarity

An intriguing thought was presented to me the other day, and I have found myself thinking about it all weekend.

I have always had issues with being excluded from the J-man's therapy. Philosophically, I have felt that it was important for me to learn what to do with him. Also, I have just had a gut reaction to the idea... I just have never thought it will go well. However, our newest speech therapy location does have one-way mirror-windows so that I can sit and observe. Our speech therapist there tried to 'encourage' me to step out and observe, instead of sitting in the room with Jonathan during therapy. I didn't like the idea and neither did Jonathan... he basically melted down every time we tried. So, we have backed off for the summer...

This week I spoke with the Apraxia expert (JJ) who evaluated Jonathan a few months ago. I contacted her because I had recently watched a video from the Childhood Apraxia association. One of the experts interviewed on this video stated that if your child is not making "progress" in speech therapy within a 'short' period of time, you need to seek out other therapy or switch up the techniques or strategies used. My question to JJ was how do I know if he is making progress? What defines progress? Obviously if he is talking up a storm... well, there you go! But if not? Are 5 signs in a year and a half progress? Is that enough?

Anyway, we spoke at length about Jonathan. Where he is, what we are doing, where do we go from here....? I won't bore you with the details. What stuck with me from the conversation was her take on this 'separation during therapy' issue. When I explained the problem, this is what she said:

"(paraphrase)... Well, of course he needs you there! For him, you are his interpreter in a confusing world where he doesn't know how to express his needs or concerns. You provide information and understanding, and he trusts that you ... trusts YOU....will help him. No one else will be able to do what you can for him, and no one can be as effective as you for making the changes in communication he needs. He knows this, and so do you. That is what your gut is saying..."

I like her. We might have to switch therapists again... dang it.

Pia

Viva La Different

Dan called me at work tonight with a cute story about J-man. Cute and kinda sad.

.

We are still in the process of meeting our neighbors. Tonight my hubby took J-man outside in the front yard and our neighbors across the street were out with their two-year-old boy. Up until this point we have only done the ‘wave and smile’ with these folks.

The little boy came up and said ‘Hi’ to J-man… how very appropriate. And J-man… being J-man… basically ignored the little boy’s existence and ran around. Dan took J-man to the little boy and tried to get him to say hi. J-man finally noticed the boy and…instead of saying ‘hi’ of course… leaned into the boy and gave him a J-man Kiss. (The J-man Kiss is a pursed-lip-lean-into-you kiss. No slobber involved.)

How cute is THAT?!

Apparently, the mom did not think it was that cute. Dan said she seemed a little freaked out. She hustled her little boy away with a‘nice to meet you’.

Hmmm… I guess we won’t be invited for a playdate?

Perspective

Today a friend from work lost her sixteen month old son in a tragic accident. Wrapped up in a cord from some blinds, he couldn't breathe and lost consciousness. She did CPR and he was rushed to the PICU, but it was too late and today he went on to meet God.

For all of our struggles, I have Jonathan to hold. To kiss. To laugh with and cry with.

I cannot possibly imagine the pain and grief she is going through today. And no doubt the days, weeks, years to come. My heart cries for her.

The idea of being without Jonathan is unfathomable to me. I think it would break me in two. So today I am reminded that for all of our struggles, we have him and the joy he brings.

Appreciate your children today. Hug and love them.

Pia

Different

Occassionally I am reminded: Jonathan is Different.

This week we had guests. Good friends with three children, ages 11, 6, and 3. Their youngest boy (3) also has some developmental delays, similar in many ways to Jonathan. And yet different. Nevertheless, despite having a household crammed with kids and toys and craziness, it was a wonderful week. Jonathan glittered with excitement as the week went on. Strangely, the two boys got on really well... which is great for two children with language issues and developmental delays. And the older children were wonderful with Jonathan as well... treating him like a sibling and playmate.

For me, it was wonderful having my friend here. Of course, just having a friend to pal around with was awesome. But there was something very comforting about having another mom around who gets it. Really gets it. And she gets Jonathan... no strange looks or pitying glances. Or avoidance of us. Just pure acceptance and enjoyment of Jonathan for who he is (and let me just say... Jonathan is delightful. No bias at all!).

Today they left to stay with some family on their trip. And the house is pretty quiet. When Jonathan got up from his nap he walked from room to room looking for the kids. I think we both felt a little lost.

So I decided we needed to get back into our routine. We packed up the stroller and headed to Jonathan's favorite place...the park. A dad and his two little boys were already there. The oldest boy... who was also 2 1/2 years old... ran up and said hi, asked for help up the slide, chatted up his dad, climbed all the way up the jungle gym to the top slide and went down with no help. He played rough and tumble with his daddy, and even tried to chat up Jonathan.

Jonathan just laughed. He was quiet most of the time, except to sign "Go" and "up" or to make his "Nnnnnnnnnnn" sound. He didn't respond to the boy, or to me really. He needed help up the slide and didn't climb up the jungle gym.

The boy's dad had a question in his eyes. He knew Jonathan was Different. It is starting to show... the differences between my boy and other children his age. When he was younger it wasn't necessarily apparent to the casual observer. But that is fading fast, and I am now struggling with Jonathan as Different.

Updates of a Completely Unrelated Nature

The last few weeks have been crazy with a Capital K.

Update #1: New House

We moved! We bought a house! We own a single-family home in suburbia! And yes, we still own the townhouse, a situation that fills me both with dread and freak-out-ed-ness. The decision was made to rent out the townhouse for a few years until (hopefully) the market improves (or we save enough money) to sell it. But we shall see… who knows what the next years shall bring us!?

In the meantime, I have decided to be in love with our new house. And I am totally in love. The view is lovely (lots of green and trees) and the space is perfect. We are sllllooowwly settling in. Jonathan loves it too… big back yard and lots of room to run. He drags me to the door constantly to go outside.

Update # 2: More and Go

We officially have TWO signs now: More and Go. ‘More’ has turned into the sign Jonathan uses for everything he wants. EVERYTHING. Which I had been warned about… that kiddos will default to the “more” sign when they want things. But that is ok. Intentional communication, even if it is simple, is better than nothing at all.

“Go” started and picked up speed almost immediately! Generally, it is preceded by my prompt of “Ready-Set-…” , but not always! Occasionally he will give the sign “Go” when mom is just too darn slow for his taste. The other day at the park Jonathan pushed me towards the swings and wanted me to sit on one. I did, and he signed “GO”. So I started swinging and he laughed and laughed.

HOORAY!

Update #3: The Response to the Letter

Because many of you have emailed me wanting an update to our Speech/OT Clinics response to The Letter, I thought I would pass it on.

Essentially, we never heard from them.

So, last week… my ‘pair’ being shy…. I sic-ed Dan on them. Dan called the clinic and spoke with M. He asked her if she received the email and wanted to talk to her about it. He told me later he got the distinct impression she was reading it as they were speaking. Anyway, the sum total of the discussion was that their position was that too many families were canceling and they needed to implement a tough policy. She stated that this policy was for more ‘problem’ families, but they needed a blanket policy to address it. Dan explained our position AGAIN, but she wouldn’t budge. So basically Dan told her that was fine, but as soon as this policy gets to be a problem for us we will start shopping for new services elsewhere.

Suddenly she budged. A little. Not wanting to lose business, I am sure, she asked us to please please talk to her if it became a problem and something could be worked out. Ahh-haaa…

I feel for the families who don’t know they can challenge policies like this. I feel like, in any other business, if there is a policy that in unreasonable the customer can easily say ‘Screw you” and go elsewhere. But when you are dealing with children (special needs or not), the game changes. And when it comes to therapy… which I believe the relationship between child and therapist is very important… you just don’t want to uproot the child. So I think parents are inclined to suck it up and not make waves. I say… MAKE WAVES!!! I don’t want to take him out of therapy, but I will challenge this policy.

Pia

Growing A Pair

One thing I have noticed about being a parent of a special needs child is that I need to grow a pair. A BIG Pair.

I am a Midwest girl, born and raised. They don’t call it “Minnesota Nice” for nothing; being aggressive, assertive, pushy, or fighting for your rights is generally frowned upon. Being ‘nice’ is important. If you can’t say something NICE…you know the drill. Of course, what this inevitably leads to is a passive-aggressive style of conflict resolution, coupled with a lot of internalized resentment and bitterness. But damn it… We are NICE!

So, needless to say, I have always had issues with confrontation and conflict. I don’t want hurt feelings. I don’t want people mad at me. Luckily, grad school taught me the fine art of persuasion. If you can’t confront, manipulate! Make them think it was their idea! Act stupid, like you didn’t quite understand what they were talking about, but hey, did they mean THIS?? Blah blah… I am a genius at that. I mean, really good.

But for the J-Man… and our family… I need to learn to be a little less nice and grow a pair. My hubby (raised in California and Texas) has a huge pair. In Good Cop/Bad Cop terms, he can be a seriously BAD Cop. However, one does not set loose his pair out into the world uncontrolled.

Therefore, lest there be crying and restraint orders issued, I need to cultivate my own pair.

Therein lies my latest quest.

Three days ago our therapy clinic issued their new attendance policy. Without transcribing the whole document, here is the basic gist of it:

1. We are not allowed to cancel an appointment. Ever. If we cannot make an appointment, we must reschedule the appointment within 30 days or pay a $30 ‘fee’.

2. When we reschedule we will not be guaranteed our usual therapists or times in which we are available.

3. There are no pre-scheduled absences allowed.

4. If our therapist is gone (sick or on vacation) they can cancel the session but we must reschedule or face a $30 fee.

For some reason, this made me livid. Not just annoyed, ticked off, frustrated, and agitated. LIVID. I can’t explain the reason behind the depth of my response, just that this policy seemed so grossly unreasonable and we already have enough unreasonableness in our lives. So, here is my response (via email):

My husband and I have a few concerns over the new attendance policy that has been implemented by Family Speech as of June 15.

It seems to us that this policy has been established to guarantee revenue without any regard to the complexities of the lives of the families you are serving. As a parent of a delayed toddler, I have been involved in every element of Jonathan's therapy. I have attended every therapy session personally since we started therapy at St David's when he was 16 months old. Additionally, we have the school district EI services in our home two days a week. During the school year I also attend an ECFE class with him once a week for socialization. This has meant that for the past year we have participated in some type of therapy 5 days a week. Additionally, I work at Children's hospital as a RN in the evenings, and my husband works at Wells Fargo. We have rarely had to cancel a session, and usually those sessions involved some other appointment (for example, MRI-EEG at Gillette, meetings with the developmental pedi at Children’s, etc) or being ill. In that year we also took one week off therapy to visit the grandparents out of state. Nevertheless, our lives are pretty much consumed with therapy.

However, the policy you set forth would require that we attempt to reschedule those occasional missed appointments. It makes no allowance for advanced, pre-planned time away (vacations, hospitalizations, etc). It would require that my son... who is only 2... be able to have therapy with a complete stranger.... a session that I doubt would be very therapeutic at all! It requires that our family... with all of the constraints on both our time and energy... try and fit in yet another time, another appointment.

I don't find this policy to be very family friendly at all. I believe it unfairly puts the burden on us, the consumers, to accommodate your needs without taking into account our needs. I recognize that you must maintain some stability with your scheduling and your revenue stream. I also recognize that missing appointments interferes with the goals set forth for the child. But I very much feel that the occasional missed appointment or a family vacation should not be penalized. Indeed, sometimes a little "therapy break" can be good for all concerned.

We would like you to reconsider your new policy with respect to these issues and interject both an allowance for a set number of missed appointments a year (possibly 3-5), and/or an allowance for pre-scheduled vacation times. We would be happy to address these concerns with you personally or via phone. I attend every ST/OT session, so you would be welcome to come discuss this with me at that time as well.


Probably not very ballsy, but it is the best I could do.

Sometimes I just wish I could say “BITE ME”. And mean it.

Pia

The Game of Perfection

This is the Game of Perfection. You might remember it from childhood. The object of the game is to push down the blue platform (empty of all shape pieces), turn on the timer, and place all twenty-five tiny shapes in their places before the timer does off and throws all the shapes out.

Jonathan has this ability to amaze me.

During therapy today, this game was in the OT gym, a leftover from another child's therapy. The moment we walked in Jonathan saw the game on the floor and wanted to look at it. Our OT took the game out... sans tiny pieces... and let Jonathan explore it. He played with the timer, the buttons, and examined the shape-holes. But he knew something was missing... those tiny little yellow shapes! And he would not be diverted. Our OT (with my blessing) gave in and let him play with the tiny yellow pieces. We were on Defcon Five "mouth alert"!

Not one piece hit his mouth. Instead, they hit the shape-holes! Jonathan quickly examined the pieces, scanned the board, found the right place, and managed... with his tiny fingers... to get each shape into the correct place. He did it over and over... probably half the board.... before he had enough and wanted to move on to some other fun activity.

Meanwhile, the OT and I were nearly peeing ourselves. He is TWO! The fine motor skills and visual ability to do this task .... AMAZING. It is quite clear that whatever delays Jonathan has, this is NOT one of them. We had another OT in the room coming over to watch, all of our jaws on the floor.

Jonathan is teaching me to not underestimate him. Message received, J-Man!

Pia

Progress!

We have had a big step! Finally, after months and months of working on this, Jonathan will finally sign "More". Our first SIGN!!! Of course, it is a very loose approximation of "More", but I'll take it!!! He is generalizing it to "anything I want to ask for", but it is a starting point. He has also been saying more sounds and attempting... albeit very sporatically... to imitate sounds. It seems like every day we see him do something new, which is very exciting!

Check out this video. It is very long (and I look like I have been living in a box of chocolates and I ate them all) but it is fun to see him do it over and over!!

Pia

Eval-A-Go-Go

We wanted to go to SuperDoc for the SuperEval.


Alas, our dreams ... at least for now... are dashed.


But that is ok. Instead, we were referred to a speech-language pathologist who used to work for the State many years ago, and now owns a private agency in the Cities. According to the Important Person at the Department of Health, she is one of the leading experts in our area on toddlers with significant speech delays, and has very extensive experience with apraxia. Since so many people have been hinting at that, but no one has been able to definitively say that is what is going on, it has been eating at my craw. So, we decided to go for it and see what she had to say.

The eval was TWO HOURS. Actually, to be honest, it was the best eval we have had. She asked all the right questions, made great observations about Jonathan... even keying into some of his more subtle skills and abilities... and listened to both him and me. It was great.

And her opinion? Well, that is complicated.

She does indeed believe that at least a large part of Jonathan's issues are about motor planning. She explained that motor planning issues (like apraxia or dyspraxia) are not like the issues that adults have after a stroke. There isn't just one area that is damaged necessarily. On an MRI, the brain may look totally normal. But the way the different areas of the brain "talk" to each other is disrupted. In other words, these issues are often the result of discoordination of the areas of the brain responsible for speech and motor movements. Getting these areas to work in consort is where the difficulty lies. Because of this discoordination, the child does not interact with speech and language the same way as other children. Frustration ensues, and it can either manifest as shutting down, disconnecting, or acting out. Often these kids also exhibit poor motor coordination in other areas. They may be slow to sit, to walk, clumsy, or resistant to doing certain motor tasks. Much like my boy.

However, she also offered that he may also have some underlying receptive and expressive language issues in conjunction with these motor planning issues. Since apraxia... pure apraxia... is quite rare and difficult to diagnose, she was quite clear that his story is undoubtedly not done yet. But she was firm in that his therapy needs to be very focused on his imitation skills and getting him consistently making sounds, especially on request. She promised a detailed write-up with very specific suggestions for treatment, and asked us to stay in touch and call if we have any questions.

She was also quite clear that... while the "spectrum" could certainly still be in the mix.... she felt that much of what she was seeing from him really pointed to his language delays. She was firm in saying that unless there was a dramatic change in his behavior.... greater social withdrawl or sensory issues... that a specific autism evaluation might not buy us much but a "label". And since we already have services, and will continue to have services given the extent of his language delay, there is no need to impose any other label on him. Useless, actually.

It was one of the best evals that we have had. I am not sure she told me anything more than what I already suspected, but I do feel like she really understood Jonathan and was able to articulate his needs. It will take me a while to digest what this might mean...

I was... am... impressed.

Pia

The Return of the Green-Eyed Monster Momma (aka GEMM)

Scene: ECFE Class, Friday

Characters: My alter-ego, Green-Eyed Monster Momma (GEMM), Jonathan, and our class of mommy-toddler dyads.

The Story: Every Friday we go to an Early Child Family Education class called Toddlers and Twos. It is a mommy-toddler class where we (the mommies) play with the kiddos for about the first half of class, and then“break away” for the second half for the ‘parent education’ portion.

I have to admit, I have a love/hate relationship with this class. The people are lovely, the kids are cute, and Jonathan needs the social interaction. And I think he enjoys it, the change of pace, the new toys, and even the activity from the other children. He especially seems to have a love/hate relationship with a little boy, ‘Al’. They watch each other and push each other’s buttons. It is really cute and really normal. On the other hand, the ‘parent class’ portion can be a little bit of torture. First of all, the class itself usually covers a topic that is well outside of Jonathan’s Zip Code. For example, the following: potty training (doesn’t know the concept), discipline and time outs (not even close), teaching about stranger danger (uh, really?), and how to encourage your child to help with chores. Seriously, never do I feel as disconnected and inadequate as a parent as when I listen to these moms talk about the things they are struggling with and managing to get their kiddos to do (Little Susie will put away her shoes and jacket, but I just can't get her to wash the dishes yet!).

Well, we hit an all time low.

Today, a mom in my class came in and started telling the following really cute story:

'So, 'Susie' has been peeing in the potty for about a month now ('Susie' is 22 months old, by the way). But ya know, she has never poo-pooed in the potty (yes, they use words like poo-poo). So this morning she told me she had to go potty, and while on the potty she had a bowel movement!! I was sooooo excited, but little 'Susie' was very upset because she wasn't expecting to have poo-poos. I said to her " you must have been very suprised". And she responded "Oh Mommy, I shockeded!". Isn't that just sooooo funny?!?!'

At this point, GEMM reared up her ugly, pissed off head and tried to crawl out of my body to tear this mom's eyes out. She didn't. I laughed along with everyone else, while trying to curtail the seething rage that GEMM was inspiring.

Not only is Little Susie potty trained.

Not only is she now poo-pooing in the potty.

But she is having conversations with her mother about her emotional reactions to poo-pooing in the potty.

Great.

I'm going home.

Pia

My Mother's Day Flower

One of our many therapists planted this flower with Jonathan for me the other day. He didn't really like the dirt (weird kid) and really didn't want to touch the flower, but he did half-heartedly participate in the planting.

After therapy, he noticed the flower on the counter and pointed to it. I picked it up, squat down (oiwee! my knees!) and said "Fllllooooowerrr". He reached for it like he was gonna crush the bejesus out of it, and I said "ooooohhh.. gentle". Then I carefully 'pet' the flower and did a very exaggerated, over-the-top sniff-sniff of the flower, saying "yummmmmmm'.

Jonathan seemed fascinated in this strange behavior of his mommy. I repeated it several times as he moved around me in rapt attention, grinning. Finally, I said "oooh, your turn... smell" and I sniffed the flower again. I leaned the flower toward him and...

Sniff -sniff!

Ok, it was really more air OUT of his nose than air INTO his nose, but he made the effort. And he got a whiff of the less-than-exciting fragrance of this flower. He understood. He pushed the flower back to me and I sniffed. Then his turn. My turn. Daddy came in. Daddy's turn. All the while he would make this sound that sounded like "ooouuuww". It had the same inflection and intonation as the word, just missing a few elements here and there.

This level of turn taking and imitation is NEW. Exciting! He did it again the next day, and later at the park with totally different flowers. Each time he sniffed and shared with me.

Happy Mother's Day, all you mommas! Enjoy these kind of moments, and let them carry you in the darker days.

Pia

Small moments

Jonathan's Grinch Name

December 2007

Tonight, Jonathan and I engaged in a battle of wills.

Jonathan has determined that the best thing ever is to pull a chair up to the TV, stand up and put his face on the screen. I am not sure if this is a visual stim thing, or he just thinks it is cool. Who knows? Generally, he really isn't a "stimmy" kid.

Tonight I decided to put my foot down. Jonathan would pull the chair over to the TV. I said "No" in my sternest mommy voice. He would whine, cry, and look at me out of the corner of him eye as he ever so slightly would move the chair closer. I would move it back. Cry, whine, sneak. Finally, as I sat on the sofa with Dan and watched him slowly try to inch the chair back toward the TV with the very corner of his eye on me, I said "Someone is gonna go nighty-nighty!!"

His head whipped up and his eyes met mine with instant recognition. He knew EXACTLY what I said. And more than that, his expression also said yes... nighty-night is exactly what I want.

I repeated "Nighty-night? Ok, get blankie"

.

He started looking around for his blanket. Dan said "on the chair" and pointed. He ran over, grabbed his blanket, and reached for me. And off we went.

.

Most of the time we really are not sure what he understands. I know he knows more than he lets on, but often it is difficult to ellict responses to our verbalizations. However, tonight we really got to see him react to our words. Follow directions. Engage in real social non-verbal and receptive verbal communication.

.

Small moments, but important ones.

Pia

The Birth of a Blogger?

I started this blog with the intention of just recording the steps that we go through to help Jonathan communicate and to record our progress over time. Sorta like a open diary/self help blog.

As time has gone on I have found it to be theraputic. And revealing... both to you and to myself. Funny, I find myself writing or confessing things here that I don't/won't necessarily say out loud. That is not to say that I don't commit a little bit of self-censorship. I confess I know that certain family and friends may read this, and I am never sure if it is ok to possibly offend them with my honesty. There are entries I have decided not to write, for fear of leaving hurt feelings or sentiment.

But lately I have been reading quite a few other blogs. They are filled with stark honesty, truthfulness, and love. The love of their child, yes, but also the love of the written word. Of writing down their stories, with all of the warts and horrors, joys and laughter. They craft these sites for deeply personal reasons, but you can tell that it is more than just babbling into cyberspace that they are doing. They are writers, storytellers, bards, poets. They take the truth of their lives and turn in into the truth of OUR lives.

I am inspired by these people and find myself wanting to make this effort more than just verbal diarrhea. I feel like a fetal writer about to be born.

So if my birth is messy, or longwinded, or boring... please forgive.

Pia

Embracing Suburbia

We are house hunting.

We've owned a townhome for about 5 years. We (of course) bought it when the market was 'red hot'. That means we paid WAY to much for it! Of course... my luck. Anyway, given the current and no doubt long term downswing in the market, we figured we were pretty stuck here for a while. So we weren't even looking at getting a new home... even tho this one feels a bit on the tight side... for a long long long long time.

But we caught the bug.

It started out innocently enough. My dad sent us a link to a news story about a real estate agent who does "house swapping". My hubby called her and she came and chatted with us. She suggested that we consider renting this one out (since the rental market is "red hot".. HA HA) and look into a second home. OK... THIS IS RISKY FOR ME. But, we caught the bug. We looked. Bad idea. Cheap foreclosure houses at rock bottom prices and great quality. It is like a rash that you can't get rid of.

Itch itch itch.

So the hunt has started.

In pursuit, I spent the greater part of the last 2 weeks looking at houses online. Now, here is the rub. I reeeaaalllly want an older, cooler, more hip house in the city. You know, the ones with the great 'bones' and the cool coffeehouse at the end of the block. The progressive hippie-wanna-be neighbors and ultra-hip cool parents wandering the streets. THAT neighborhood.

But therein lies the rub. Because those ultra-hip-cool neighborhoods are also in the city with marginal schools. And the 'good' schools are in neighborhoods well outside our price range. And with our boy... and who knows WHAT needs he might have come kindergarten.... we have to go where good schools meet bargain basement prices.

We must live in SUBURBIA.

We have lived there for a while, to be sure. But that is not my dream. Strip malls and soccer moms and commuting and minivans. Sooooo not my dream. My hubby loves it.... big yard, big basement for his big TV, big 3 car garage for all his 'man-stuff'. His dream of dreams. Not mine.

But life is full of compromises and this is one I guess I am making.

However, if I am going to compromise for my family, then I want to make sure that what we get (especially for Jonathan) is perfect. And that means excellent schools. But how does one find out what are the good schools, especially for special needs kids?

Well, it isn't easy.

I called the Department of Education for the State of Minnesota. Yes, I did. I spoke to a woman in the Special Education division and basically asked her... given we can move anywhere... where the best schools are for a special needs boy (specifically speech delayed)? Here is a summary of her answer:

" All of our schools need to be in full compliance with the Americans with Disabilities Act and IDEA. If your son has it written in his IEP, then it needs to happen. If it doesn't, or you can't get what you think he needs, then you can call us for advocacy and mediation".

Sure. Thanks for the PC answer. Don't get me wrong, I am sure she HAD to say all that. But the problem is that I CAN be a good advocate and WILL call them if we can't get what he needs. THAT is not what I am asking. The truth is... if there is a school or a district that already has their shit together, then why should I choose to go to one that doesn't? Like I need MORE battles?! I understand that all the schools are suppose to comply. But there is a distinct difference between the ideal world and the real world. The truth is some districts have more money or better people and programs. Other districts place their focus elsewhere. THAT is the real world.

Oh well, the hunt will continue.

Pia

A Little Hero Worship...

I think I have a blog-crush. I have been following the blog http://www.schuylersmonsterblog.com/ from the writer of the book I reviewed before, Schuyler's Monster. I am just so impressed with his writing style and interested in both their experiences and his opinions about being a parent of a special-needs child. I am learning so much about the politics and process of being a good advocate for Jonathan through reading his site. I just had to pass it on...

If you are interested, check out this interview with him: http://www.publicbroadcasting.net/kera/news.newsmain?action=article&ARTICLE_ID=1233894&sectionID=1626

His interview is in the first 13 minutes and well worth watching!

Pia

Speechless in Andover

Pic of Jonathan at the park

Taken with my phone

Impressive.

Just a quickie update.

Jonathan has another speech evaluation today, this time at the clinic up the road. Overall his mood was "ok"... not a total bear, but not completely on his game. I find these evaluations hard because it becomes clear to me how far behind he is, how little he can do... and how HARD we have had to work to get what we have. The therapist was very nice, and I am interested to see what approach she takes with him.

As always, I am hopeful for this new therapist. But I am also realistic. I am just not sure what he really needs. So we will continue to flounder about and see where it gets us.

Pia

Green-Eyed Monster Momma

I am an awful person.

A terrible horrible awful person.

Today, I saw a family I cared for at work quite a bit when I was pregnant with Jonathan. They were a beautiful, fun couple with a son whose due date had been the same as Jonathan. Unfortunately for them, their son was born at 23 weeks gestation. He had been terribly sick, with significant respiratory issues. He went home with a tracheotomy, a ventilator, and home care nursing 24 hours a day. Their road had been nothing short of a nightmare, I am sure.

I remember during the last stages of my pregnancy I took care of them often. They were always so lovely and encouraging. This family was even still on our unit when I came back to work. And I remember feeling slightly guilty that I had this 'perfect baby' and they had all the trials and frustrations while fighting for their son's life.

Today they came to visit. Their son is beautiful and perfect, a miracle of modern medicine. Nut brown curly hair, a quick smile, big brown eyes. He ran around our lobby area as his parents talked to us about him. He has some remaining medical issues, but overall is progressing very well and by all appearances is developing on schedule.

And when his mom said "oh yes, we figure he says about 80 words", my heart went still. I excused myself from the group and left. I am an awful person for the jealousy and anger and sadness I felt hearing their joy. If any family deserves a good outcome it is them. And I wouldn't wish our struggles on anyone. Nor would I even suggest that what they went through was easier, or better, or preferable.

But I still suck. I am still jealous of his 80 words, his engagement and flirting, his ease with the world. And I am sad that I have become this person... this green-eyed monster momma.

The Beginning of a Month

The start of a new month is always a downer for me. I think that as each month passes I get more and more... sad? convinced?.... that this whole business isn't just 'a phase'. That Jonathan won't wake up a few neurons and suddenly all this will be behind us. Every week at ECFE I see the difference between my boy and the other 2 year olds, and I am sad.

I think this month is going to be a bit harder, because we are in the process of looking for new speech and OT. As such, new centers are looking to re-evaluate him themselves. We started this already on... of all days... April 1st. We took him to be evaluated for OT at the local therapy center. The OT was lovely... very warm and understanding. And Jonathan was having a bad day. Not bad-tempered.... but not very engaging. He was in wander mode. He didn't have any desire to follow directions or pay attention. To me... that day... he did look autistic. To a stranger who didn't see his good days, that is what I would have said. Not in the self-stimmy way... but in the disconnected way.... the non-engaged way.

Speech eval is coming up and now I dread it. What will be said that stabs at the heart?

We started this process a year ago in April. It looks like April is meant to be my sad month.

Pia

Nothing stays gold, Ponyboy

Yesterday we got an interesting letter in the mail.

Our private speech and OT services are provided by an agency I use to work for many years ago. One of the reasons we started Jonathan there was because we could get him evaluated quickly. We stayed because we really liked our speech therapist, Katy. It is about a half hour away, but we made it work.

Until now, apparently.

The agency sent us a letter stating that they were closing the location where our services are located, and relocating all services to their main location. Their main location is lovely; it is actually the location I used to work at. It is also about one hour away.


I had been struggling with what to do about our services, largely because I wasn't sure our OT was working out. Plus, the distance was starting to become an issue. I was 'on the fence' about what to do.

But it looks like the decision has been made for us! We just can't travel that far for services. I am really sad because... while I did have some reservations about our OT, overall things were going well and I felt comfortable. They were open to me participating. They know Jonathan... where he has been, what he has accomplished and where he has to go! Our new program of OT for 45 minutes and speech for 30 minute was really looking good. This wasn't really in the game plan for right now.


So now I have to get a new game plan. Do we continue to pursue private speech and OT? Or do we try and maximize our early intervention services and put our focus there? If we continue with the private speech and OT, where do we go? I want the best... the absolute best... for Jonathan. I think we have it in our EI, and I don't want to compromise with anything else! Could I manage to do it on my own? Should we take the summer off? Plus, we have the added issue of our summer services. We may not get to keep Kristin for the summer, so we would have to start fresh with someone new... at least for the summer months.


Ahhh... why can't this be easier?

Pia

I might be NUTS

Well, we finally got the EEG results!!!

NORMAL!

Hooray NORMAL! We love normal!!! Hooray hooray hooray!!!

Ok, now here is the nutty part. There is this tiny little illogical part of me that was disappointed that they didn't find something. Of course, I DON'T! But I think I am starting to crave answers to the question of "Why?". Why is Jonathan having these struggles? Why is it that he has such trouble with language... he is so smart in so many ways! And of course, there is the issue of guilt. Did I do something wrong during pregnancy to screw up his brain? Did we pass on crappy genes? Did I not stimulate him enough as a baby? Or now? What is going on here?

I have enough education to understand that this is not a simple cause-and-effect situation, and that we really don't know what is going on... and that guilt and blame are not important. However, not knowing WHY is hard.

As Robert R-H would suggest, is the monster-- hidden in the dark -- scarier than the monster revealed? I suppose it would depend on the monster.

Pia

No News is No News

6 months old

Ok, just a quick update for all you loyal friends dying to know what we found out from the MRI and EEG.

Well, let me just start on Tuesday...

When we left the hospital we were told that the results should be back by Friday, and that someone would be calling us with those results. Of course, I couldn't wait until Friday... so, being "that mom", I called on Wednesday and asked them if anything was back yet and... if not... when? I spoke to "Kelly" (our MD's nurse) and she checked his records and said that the MRI results were back and they were.... tadadaDA: NORMAL.

HOORAY FOR NORMAL! Normal means no major brain tumors. Or small ones. No malformations or head bleads or strokes! YEAH NORMAL!

Alas, the EEG results were not back yet, but she said we should know something by Friday. Ok, I can wait until Friday. We had a NORMAL looking MRI.... that should pacify me until Friday!

So on Friday I carried my cell phone everywhere, even to the bathroom. Now, Friday was a busy day. ECFE in the morning with Jonathan, cleaning my house because my mom was coming over to babysit, and I had to take my hubby to get his renal stent removed that afternoon. So the first moment I had to really call them... because I couldn't wait anymore... was 2pm as I was drving my hubby to the hospital. Here is how this conversation went:

B: Hello, Gillette Burnsville. This is Bethany.

Me: Hello Bethany. My name is Pia and my son is Jonathan P and he had an EEG and MRI on Tuesday. We were told that we would get those results by today. Can we talk to whomever can get those for us?

B: There are no nurses here to give you that information today. You will need to call back next week.

** Note: Bethany's voice was about as indifferent and politely robotic as could be. Cold would be a warm description of her voice.

Me: You are telling me that there are no nurses there at all? At the clinic?

B: Yes mam.

Me: But I was specifically told that we would be getting these results today.

B: There is no one here to give you those results.

Me: How can there be NO NURSES at a clinic??

B: The morning nurse left at noon.

Me: Why didn't she call me then??? Why would I be told we would find out on Friday if no one works on Friday?

B: I don't know mam. You will have to call back next week.

**At this point, my head exploded. In my mind I reached through the phone and strangled poor, emotionally cold and defective Bethany with my bare hands. In my defense, she was delivering me this news like I somehow was upset that my cable wouldn't be hooked up until next week... not like I was having to wait to find out if my 2 year old son was having seizures.

Me: Well, gee, thanks for all of your fine help (insert sarcasm). I can't wait to talk to you Monday.

So, hopefully Monday we will also hear the words normal. If not, I might have to drive to Burnsville to have a little "chat" with Bethany.

Pia

Kisses

Ever since I can remember, I have smothered Jonathan with kisses. Kiss showers, kiss storms... I'd rain kisses all over him. As a baby he'd giggle or squeal. As a toddler he'd giggle, laugh, squeal, or just tolerate it (as most toddlers do). However, he never kissed me back.

Today, Jonathan kissed me.

For months and months and months I have uttered the request "Give mama kisses!" with a big pucker-up face. Usually the response was a grin and to run away... prelude to a Kiss Storm. Recently, he started leaning his cheek into my lips... submitting to the kisses, tolerant of mom's need for the smooching. Today, ever so slowly... drool dripping from his slimy chin.... his chubby little lips met mine. I was so surprised that my face completely lit up, which resulting in his face completely lighting up with surprise at what he had done, and much hugging and kiss storming commenced.

Who needs words? I got kisses...

Pia

the Reason...???

Is this the reason for Jonathan's speech delay???

Today was MRI/EEG day. And a long day it was. I must admit, I think it went a lot better than I thought it would. I am also quite sure Dan would disagree with me. Dan was stressed. He has a very hard time seeing Jonathan upset. I do too... but I guess I have a little more tolerance for it.

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The EEG was the worst part for me. He needed to be 'sleep deprived', so I woke him up at 4am. I am not a morning person, to be sure. He recovered well enough. But Jonathan HATES his head being touched. Especially by strangers. And for some strange reason, the marking, prep, and placement of 26 EEG leads on his head was just not his cup of tea! Go figure. I must have packed up about 2 bagfuls of toys.... sensory box of beans with animals, a vibrating cow, easter eggs with prizes in them, etc etc etc. Anything that I thought might distract him. And it worked... sort of. Mostly, he cried and fought the lead application process. But once that was over he actually did calm down, played a little, and eventually fell asleep. The EEG tech said it was a "good session", although she would not tell us if she saw anything. We have to wait until the DR sees it.

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The MRI was the worse part for Dan. The plan was to use gas sedation to put Jonathan under, and then they would start his IV, draw labs, and do the MRI with sedation. Dan wanted to hold him during the initial gas sedation. It went well. Jonathan went out like a light. But, if you have never seen that kind of sedation it can be disturbing. Jonathan went from wiggling and fighting to his eyes rolling back in his head, going totally limp. We laid him down on the table and then needed to give our good-byes and wait in the waiting room. So NOT what Dan wanted to do. It was scary... while our mind tells us everything is ok, the heart says NO NO NO. It was tough. But by this evening Jonathan is back to his normal, happy self. We are a bit tired but relieved it is over.

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Now the waiting begins. We should hear SOMETHING by Friday, but what we will hear is still unknown. I think it will be fine, but who knows. In the meantime, it is snowing and cold. I have to go grocery shopping. Life goes on.

Pia

Three Pans of Brownies

So I am making three pans of brownies.

Why, you might ask... aside from the chocolatey-goodness that my brownies offer... am I making three pans of brownies?

Therein lies the story of our weekend.

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I must admit I was heartily looking forward to the weekend. It was my weekend to work. Twelve hour shifts, both Saturday and Sunday, from 7am to 7pm. Twelve hours in the NICU, with my work friends and adult conversation and a break from being mommy for a while. Usually, I am totally willing to give up some shifts... I'd rather be home... but having been off for well over a week, I was ready to be at work for a few days.

So when I arrived at work on Saturday morning, I was in a good mood. Even my 'heavy' assignment of three patients (two of them to be discharged... which is a lot of work teaching) didn't tamper my mood. I wanted to be busy! (Side note: I did find this strange, since our unit is very slow and canceling nurses left and right... hmmm). Anyway, as I was getting into gear... swinging into action.... I get the PhoneCall. Dan calls me, in obvious pain, vomiting, and says he need to go to the ER again for his kidney stone. I can hear the little man in the background giggling and laughing as Dan is puking.

My reaction (at least inside my head) is not that empathic. I'll admit it... I was a little pissed. But whatca gonna do? Kidney stones are known for being CRAZY PAINFUL. And as much I would like to be, I am not a completely heartless bitch. So, I told him I will make some arrangements and be home as soon as I can.

Brownie Pan #1 goes to our neighbors Darcy and Justin. I called them immediately after getting off with Dan and asked Justin (who was home alone) if he would mind terribly going and getting Jonathan until I could get home. Somehow I figured Dan wasn't able to be Daddy very well at the moment. More than willing, they came to our Jonathan's rescue!

Brownie Pan #2 goes to Barb, our other neighbor and phone call #2. She took my puking and in pain hubby to the ER (Dan had said he would drive himself!!! CRAZY MAN!). So, for him and all the other people on the road, we thank her.

Unfortunately, at my job, it can be a bit of a trick to get home. But eventually I managed to get out of there (after finishing one discharge.... can you believe it?) and collected my very distraught boy. My parents were able to come up and babysit Jonathan while I spent the rest of the day at the hospital with Dan. I made them brownies that day (along with dinner). Poor guy ended up with a renal stent! He felt rough. And, unfortunately, he has to go back on Friday and have it removed.. along with the stone. To top the weekend off, I developed a sinus and ear infection. We were a household of wreaks.

That third pan of Brownies? That goes to us. Heck, I figure after this weekend, and the MRI/EEG tommorrow, and the renal stent removal on Friday.... we deserve the chocolatey goodness.

Pia

Countdown to Tuesday...

Jonathan prefers naked

Much has been on my mind this week.

We see little glimmers of progress with Jonathan everyday. The latest is his "gup gup gup" sounds. He started them the other day when I bought him some new animal toys at Target. I am not sure they mean anything... Dan seems to think he is saying "cup"... but I am not convinced. Either way, it doesn't seem to be in context of anything. Just a sound. BUT, it is 2 consonants and a vowel combined together in a word-like way. Which for him is progress.

He also is enthusastically making raspberries at the TV and at us... usually in a turn taking situation or when we watch 'Shaun the Sheep" -- the alien episode with raspberry-making aliens (for those of you not familar with the raspberry... it is that whole lip-tongue blttthhhffff sound. Come on... you know what I mean!).

However, Jonathan has embraced the terrible twos with a vengence. He has been throwing temper tantrums, pushing limits, acting deaf, and generally getting on my last nerve. I find it so hard to know what of this is language-related and what is just being two. And being Jonathan. I am also getting frustrated because I see more and more how behind he really is. When he is soooo difficult to deal with and won't or can't listen to me.... it breaks my heart and makes my head explode.

Tuesday - EEG/MRI day - is coming up quick and I am excited and scared to pieces.

Dan was in the ER most of the afternoon yesterday with a kidney stone. He'd had one before... years ago..... so he knew what it was. But nonetheless, he was in horrible pain. We all piled into my car and I brought him to the ER. But I had to leave him there because Jonathan... being Jonathan... refused to sit calmly and play. He ran, threw a temper tantrum, tried to eat the fake plants in the lobby. I had no one to call to babysit him. Grandma is an hour away. It was one of those situations where I realized we really are on our own. We have support, but not consistant and lacking serious depth. And when it comes to Jonathan, I can count on one hand the number of people I actually talk to about him. And when it comes to actually dealing with his "issues", it is really only us. Mostly me.

This blog is sometimes the only way I can get things out there. I am not sure how to talk to Dan about these things... it isn't like he is coping so well himself... so I just write it all down and send it out to the Universe. I am reading other blogs too.... it is like this community of people with the same heartbreak... but it isn't the same as having a friend in the room who gets it.

Pia

Schuyler's Monster: A Review of Sorts

Image stolen from his website.

Hope I don't get sued.

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I just finished reading a memoir called Schuyler's Monster by Robert Rummel-Hudson. Here is his blog: http://www.schuylersmonsterblog.com/ . Anyway, I just happened upon this book at B&N. Essentially, it is his story about his daughter and her "monster" : failure to develop speech and their subsequent battles to help her. It has been a powerful book for me to read. Not because there are any grand insights or conclusions. Rather, I have been moved by his honesty and humanity. He is flawed, his wife is flawed, they make mistakes... and yet they come together and fight for her. As much as she has a "monster" (as he calls it) and she is "broken", in his eyes she is so beautiful and strong.

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This is not necessarily a gentle, feel-good book to read. He is blunt and honest about his feelings. He pulls no punches, uses no "safe" words. And that is ok... even though I might disagree with his take on some things, I completely understand his need for stark honesty. Being forthright and genuine is not a quality that is always appreciated... especially not in the tender-hearted world of special needs children... but I liked it. It was refreshing and sincere. And male... a voice not often heard in this area of the world.

My difficulty with the book was more personal. His daughter Schuyler (pronounced Skylar), when young, showed soooo many of the same characteristics as Jonathan it gave me the heeby-geebies. As the book got closer and closer to her MRI and the revealing of her "monster", I found myself getting more and more anxious. With Jonathan's MRI in less than a week, it felt really spooky. And when it was revealed (I won't give it away), I found myself feeling much less confident about what the outcome of our MRI will show.

Parenting a special needs child is a challenge that few people are truly prepared for. The uncertainties, the changes, the battles that have to be fought. They are unending. They can wear on the soul. And I think that the main challenge is the isolation one feels. Parents of typically-developing children can't really understand, and often the people most close to you are unable to be as supportive as you need. It can feel like you are completely on your own. A book like this helps because there is an instant understanding. I get him. And I would guess that he would get me. And for some strange reason, it helps.

Pia

The Good, the Bad and the Nerve-Wracking

Jonathan at 7 months

Whew.

When I started this journal, I meant to write in it once a week. But as always, time and energy seem to have slipped by me. So, I am gonna play a little catch up with the last couple of weeks.

The GOOD

Jonathan has been saying "Mama" a lot (usually when he is pissed off, but I am not gonna quibble), "Ball" occasionally, and making all kinds of noises like psst, and ggg, bbb, gaa, and on and on. A LOT of chatter and noise making.


Jonathan is really developing his ability to sit and attend. He has been willing to do more things that are hard for him to do... effortful things... instead of just quitting. For example, Kristin "la teacher" had a new toy today. It was a ball-drop toy in which the ball goes in the top and rolls down a series of ramps to the bottom. Jonathan LOVED it. She started out holding the ball up and saying "ball... ball...BALL" trying to get him to request the ball. He got so frustrated... you could just see his little mouth trying to move. He would make a noise... more like a screech... and she would give him the ball. Down down down it would go and he would giggle and laugh. Over and over they did this... and eventually, he could finally get the word "Ball" out. It seems to explode out of his little mouth.... the force of sheer WILL sending it out. Six months ago he would have stopped trying long before this. I am so proud of him sticking with it!!!


We have become convinced that Jonathan knows a lot more than we have been giving him credit for. Kristin has been starting to show him objects or pictures of objects and asking him to pick the right one. For example, a picture of a car and a baby... which one is the BABY?? He picks it! Easily!! Scans both, and has picked the right one over and over again. And today, he was playing with a bunch of these Bob the Builder picture cards, noticed two of them were the same, and MATCHED them. Jeez, his brain WORKS. He is matching colors, shapes, objects. He feeds his baby doll, put glasses on it.... I mean, come on!!! Something works in that little brain... even if words are tough to come by.


He is pointing pointing pointing. And all I can say is Emily Post can bite me if she says it is rude. I'll take communication anyday!


On a mommy note, I am proud to say I am reading again. What, you say, you stopped? Yep, sure did. I am not sure when exactly. Maybe it was grad school, that forced me to read for "scholarly reasons" only. Maybe it was the birth of Jonathan, which forced me into a tired haze for a year. Maybe it was a loss of habit. But it is back, baby! I have read four books in three weeks... loved every minute of it... and I feel like I am getting some of me back. HOORAY!

The BAD:

Jonathan has decided that he hates his diaper. So, whenever he has a chance, he pulls it off and runs around naked as a jaybird, his "bits & pieces" blowing in the breeze. He loves it... and I would be totally ok with it IF he didn't have this rotten habit of PEEING as he runs. Seriously.

Jonathan has been filling his mouth with juice and then letting it run down his chin, shirt, etc. It is a fun game for him, but I am running out of clean clothes.


It is snowing again today and we are all sick of winter.

The Nerve-Wracking


Ok, now.... probably the reason I haven't posted in a little bit.


So, Jonathan has his 2-year old check up this month. I had been ramping up for this for a bit. I had a feeling I knew what was coming. And true to my ever increasing ability to predict the future... Dr. S wanted us to have Jonathan seen by a Neurologist and Genetics. You see, I had noticed Jonathan "spacing out". All kids do this. Heck, I do this!!!. But, when you have a learning/speech delay AND you are "spacing out" and you are two... well, "they" get concerned about possible seizures. They are called absence seizures, staring spells, petit mal seizures, 'subclinical' seizures.... but they all are implicated in developmental and learning delays. In fact, a lot of research is now coming out that these 'subclinical' seizures may play a bigger role in delays then they ever thought.

So now we have to rule that out.

And so... off to the Neurologist we went. Dr CB was great... a lovely woman with a gentle voice and kind eyes. She spent TWO HOURS with us... getting Jonathan's history and our history and observing Jonathan. She even had read some of the reports I had sent her the day before (SHOCKING!). And she felt like it would be a good idea to have an EEG, a MRI, and genetics/chromosomes drawn "just to rule everything out".

On one hand... HOORAY! Maybe we will get some answers!

On the other hand... CRAP! First, the testing itself is bound to be a nightmare. He is having a sleep-deprived EEG, a MRI with sedation, and labs drawn. An all day affair. And he is gonna HATE it. It could get ugly. Second, what if they find something horrible??? That is scary. Third, what if we go this this whole thing and they find nothing? Is that good or bad? I don't know... it is just nerve wracking.


Pia

Consistantly Inconsistant

The Eyes of a Two Year Old

It has been a rough week. And it is only Tuesday! Ok, well, not ROUGH... but I am frustrated. Last weekend I started to try to "raise the bar" with Jonathan It started out when I took out the crayons and paper and gave him one. He will draw a little, but he also likes to chew on the crayons somewhat and will take them and run around. I didn't let him. I took them away when he started chewing on them and/or running around. The result? Temper Tantrum! I sorta expected it. He ran over to the steps, sat down and cried. And looked at me and cried. And looked to see if I was looking and cried. Little BOOGER! After about 2 minutes I got him and snuggled him. He got over it. He is such a stubborn little man. But I think he did understand. He just didn't like it! I told Dan to expect more of those...

I am trying raise my expectations. At lunch he saw the chips on the counter and pointed to them and made his grunt noise. I got the chip bag, held it between my body and my hands and did the "more" sign. I said "want MORE?" He has done the sign a few times up to this point, but not consistantly! He kinda whined and brushed his hands together... maybe by accident... so I gave him one chip. When he pointed again I did it again and he signed MORE! It was quick and sorta surly... like he really didn't want to... but he did it.... and we did this 2 more times!! I could tell he didn't want to do it.... but he did it!

So then Sunday... tried that whole scenerio over again. And I couldn't get him to sign "more" for the life of me. I did a "hand over hand" more several times, but he was actually mad that I did. It almost seems like he doesn't WANT to communicate! So frustrating. Kristin (our EI teacher) and I discussed it today. Jonathan is consistently inconsistant. Some days he does things right away... is engaged and willing.... and it seems effortless (ok, maybe not EFFORTLESS... but easier). Other days, things we KNOW he can do... he won't/can't do at all. It is so hard to tell if it is a CAN'T or a WON'T. I don't want to push too hard if he CAN'T do it (the neurons are just not working today)..... but I don't want to be too easy on him if it is a WON'T. And meanwhile I am getting exhausted!

I often tell parents who have a baby in our NICU that this journey is a marathon, not a sprint, and that it can feel like you make two steps forward and one step back. I just didn't realize that was gonna be our journey too.

Pia