My Baby Growing Up

Oh, my little baby is growing up and it is killing me!

With all of the changes over the last few weeks, I see him growing up right before my eyes. Now, don't get me wrong... he is behind the curve on a lot of things other kids his age do, and he has to be taught things other children just learn. But his rate of 'picking stuff up' has accerated. And therefore, I have been trying to raise the bar on him and introduce some stuff that he has yet to really learn.

Number 1: Drinking from an open cup.

Confession time. Jonathan has only ever really drank from a sippy cup on his own. I have held a open cup for him, but the few times he has been given a cup on his own he couldn't really figure it out. First, of course, he would just turn it over and spill it. So then, of course, the solution to not having a house covered in milk was to just put just a little bit into the cup. But then, you see, he has to grasp the cup and be able to lift it and tip it up (correctly positioned on his mouth) enough that he gets the milk, but not too much so he is covered in it. And he needs to have his mouth in the right position... not in the middle of the cup like he is trying to lap it up. And he needs to understand the whole point to this. So, motor planning and language skills....Hmmm, not exactly up his alley.

I have tried to figure out solutions to the open cup problem. I know it needs to be a smaller cup, with generally a smaller radius so his hands can go around it and he can have better control. Also, smaller cups allow me to put less liquid in it and have him still get the liquid quickly and with less effort (reward for his hard work). I tried dixie paper cups... but it didn't work. Dixie cups are far too crushable. I have 'cup shopped' for the last several months to no avail.

And finally, a solution presented itself today: IKEA

Specifically, the IKEA's Children's Toy department where I found a tiny little glass.

Perfect for his hands. A little Toddler shot glass (and no, we don't give him Diet Coke).

And, as you can see, success! Maybe now we can move on to Dixie cups.

Number 2: Toilet Training

The J-man is no where near ready to toilet train. And frankly, his mommy is a little at a loss for how to even start introducing the idea. He just recently discovered his "bits and pieces", if you will. Since starting at the preschool daycare, he is going to be exposed more and more to other children potty training, and it was time to buy a potty chair. Grandma and I went shopping and picked up his first potty. He loves it, thinks it is great. But as you can see, he isn't quite sure what it is for.

We are ready... sort of... when he is!

A Quick Recommendation: The Signing Time DVDs

I would love to take credit for the small vocabulary explosion that Jonathan has had over the past 3 months, but I can't. At least, not completely.

And I would love to say that all the therapy over the past year and a half was what did it.

I can't say that either.

However, I can say that since Jonathan started watching the Signing Time DVDs (we received 4 of them as a wonderful hand-me-down from some friends), he has learned nearly every sign on each of the DVDs. He doesn't used them ALL in context, but we have seen him sign back to the TV when he is watching them.

Today he signed "cheese" to ask for more cheese.

He TOTALLY learned that from the video.

So, Signing Time DVDs are teaching my son language. Go figure.

If anyone has an extra $750.00, we would love to get the whole collection. Heck, we'd go for even the full first series!!

Got hand-me-downs?? We'll take them! We aren't picky or proud!

A River in Egypt?

This has been a really weird week. A highly emotional week.

It is hard to get a pulse on what I mean. I am not sure how to articulate it. A bit of a roller coaster ride of emotions, both bad and good. But what I can say is that something seems to be changing around here, and whatever it is... it feels Big.

On the downside, we had a re-evaluation with Dr M at Children's Hospital. This evaluation consisted of a lot of questions regarding the J-man's development, where he is at, what he is and is not doing... and some basic observations of him playing in the room. Dr M completed both the Vineland and the CARS (standardized assessments) and from both these assessments and his 'clinical impression' he has diagnosed Jonathan with "mild autism and significant apraxia".

Of course, the "A" word makes me absolutely sick to my stomach. It is such a loaded word, filled with a lot of scary, negative unknowns and terrifing possiblities. While intellectually I know autism has a very broad spectrum and that many, many people have been diagnosed with the big "A" and either 'come out of it' or been so high functioning that (with intervention) were able to lead great lives... but as a parent, it is still a terrifing word to hear. And it isn't like I didn't know this word might be coming down the pike... I think we have been running from this word since day one.

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And what does our running from this word MEAN? Is it merely Denial... not wanting to accept what may very well be reality? Or is it something more? Why is it that a large part of my heart and mind that really feels.... believes.... that this is NOT autism? That this is something different, less easy to define, more specific to Jonathan. More based in language and motor planning, not socialization, not sensory. But on the other hand... is that just wishful thinking? Am I turning away from something true because I cannot look it in the eye? He has many of the symptoms... many, many 'red flags'. Is fighting that diagnosis about HIM or ME? If it is me... then I need to get over it. BUT... if it is HIM... then accepting the diagnosis is like giving up on his truth.

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To add to it all.... Jonathan has had an amazing week. NEVER has he been more verbal... both with signs and vocalizations. I cannot list the number of spontaneous new vocalizations he has had.... word approximations for things like bike, water, cookie, chip, passy, etc etc. He is imitating up a storm... he even copied me making a gobble-gobble turkey sound WITH ARM MOVEMENTS! Sounds that a truck makes... vrrrooom... beep beep noises. We have NEVER heard this from him. He also started preschool this week and did wonderfully. He even sat for circle time and clapped his hands! He has been so engaged, so involved, so here. These might seem like simple, silly milestones to you, but they are miracles for us. Nevertheless, he is still so far away from his peers.

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So how do I accept the big "A" with a week like this? Or rather, DO I accept it? Is my instinct to reject this diagnosis just denial or is it something more?

Right now, I am going with something MORE.

Of course, that might just be my denial talking.

As the Green Snot Flows...

What, Me Worry??

Jonathan is starting a preschool daycare this week.

Not the original fabulous place we had hoped for; alas, that place required that we also provide a PCA or Respite Care worker, and we could not afford that. So, we decided to look around some more and found our new preschool daycare: Jack and Jill Child Development Center. What won us over here? They incorporate Sign Language in ALL of their classes. That is a definite plus. Also, because it is in our school district, our Early Intervention teacher can work with him there. A BIG plus!

So why am I worried?

Probably because I am an overprotective, hyper-controlling, crazy mom?

We visited today for the first of two 'transition days'. The first day (today) we visit the room and let him play with the kids. Tomorrow (day two) I drop him off for an hour and see how it goes. On Thursday he has his first official day. I think my heart might stop.

Today went well. He had fun, and even sat down for circle time (albeit not in a circle... more in the middle of the circle). However, two key things made me a little nervous:

1) Snot. LOTS of snot. Clear snot, green snot, wet sloppy SNOT. Now, intellectually, I KNOW that he will get sick from all this exposure to other kids. This is just inevitable. And no doubt it will do wonders for his immune system. J-man has always been lucky to be very healthy. But soooo much snot..... what are we asking for?!?!?!

2) The Toys. And no, this isn't a tangent on the whole snot-germ relationship. The fact is, we are starting Jonathan out in the intermediate toddler room. We are doing this because the teacher-child ratio is lower, and they don't have expectations that he has a CLUE to what he is doing. They are there to teach circle time, basic routines, etc etc. And many of their kids are also new language learners. So we are hoping this room holds the best possible situation for his early socialization and language.

BUT... and I rarely get to say this.... he is WAY more advanced than their toys. He plays with legos and duplos, not big blocks. He does 24 piece interlocking puzzles, not wooden five piece non-interlocking puzzles. He plays with interlocking train sets, putting together the rails and train together. He plays on big kid slides and climbers, and will want to go on those instead of the 'baby area'.

So, I am extremely hopeful that he adjusts wonderfully, learns routines like a champ, and can 'graduate' to the preschool room before too long.

Where he belongs.

The Oral Issue

Don't go there.

Seriously.

J-man has always had 'oral sensory seeking' issues. He has chewed on everything since he could reach toys. It was especially pronounced when he was younger, where he had to mouth every toy he interacted with before he could play with it. As he has gotten older, this 'sensory seeking' behavior has decreased significantly... to the point that I thought we might be over it.

But over the last few weeks it has come back with a vengeance. He is chewing on his hand, his blanket (gross!), his shirt (double gross!!), a variety of toys, and pretty much anything he can get his hands on. Our OTs have tried to shape this behavior to "chewy tubes" and other acceptable things to chew on, but the J-man is the definition of uninterested. The only thing that can interrupt this 'oral behavior' is the pacifier.

The dreaded passy.
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Up until now, I never minded letting him have his passy. The way I saw it, it was a more 'normal' object to be sucking on than any of the other possible objects he might try to put in his mouth (like dirt, rocks, crayons, little people, cars, car keys, etc etc). A pacifier is 'normal'. However, the passy is starting to present some problems.

Firstly, he is getting a little OLD for a passy. I mean, he is a big boy, and I am sure he might look older than he is. So, while I could explain why a 2 1/2 year old boy has a pacifier, it isn't an easy sell. We are starting to get the sideways glances and disapproving looks... which does defeat the whole 'look normal' reasoning for using the passy in the first place.

Secondly, it is really hard to encourage vocalizations in a child who has a plug in his mouth. It is pretty easy for him to avoid making ANY noise whatsoever with the passy.

Of course, it is pretty easy for him to avoid vocalizing with his whole hand in his mouth too.

I am at a loss for what to do about this issue...except wait it out. And hope that he doesn't go to high school with a passy in his mouth.

Don't laugh, it could happen...

The Sound of Music

J-Man at 10 months: What a cutie!

Jonathan and I were watching one of his favorite movies yesterday, Wall-E. I am not sure what his attraction to this movie is, but I do think the relative LACK of dialog in the first half of the movie is a plus. I know he loves the expressions that Wall-E shows; the movement of his robot eyes, the quickness of his actions, the 'vocalizations' he makes.

And the music. Specifically, the soundtrack from 'Hello Dolly' that provides the background music for the movie.

As we watched the movie for about the 1000th time, I started to sing along to the movie "....if only, for a moooo-ment, to be looooved a whole life loooooong...." Or something like that. And Jonathan became utterly fascinated with my singing. He opened my mouth wider, looked inside as if to find where this noise was coming from. Now in the spirit of full disclosure, he may have been wondering how the human mouth could make such a god-awful noise. But he seemed to be honestly trying to find out where the sounds was coming from.

Slowly, I sang the refrain over and over again. He opened and closed my mouth, peered inside, and eventually brought his mouth close to mine, opened his and emitted a tiny "ahhhhh".

He was trying to sing!

I realized then that I have never heard Jonathan sing. Not even random sounds to music. He has never even tried. He listens to it, and thinks it is great when we sing, but he never has tried to make the sounds himself.

Until now.

Another Review of Sorts: This Lovely Life by Vicki Forman

"Grief sucks, don't it?"

This is the reaction I got from a friend to a recent GEMM entry. And she nailed it on the head. As a mom of some special kids of her own, she gets it way better than I do. It was a revelation to me when she said it.... AH YES this is Grief! DUH!! Why didn't I see it before?? This angry, sad, frustrated, lonely, searching, seeking, grasping, fighting, treading water, pushing against gravity feeling... this is Grief.

And so, in honor of grief, I wanted to spend a little time "reviewing" a wonderful book about confronting parenting grief at its very core. Allow me to state that I am not a book reviewer. I just have an opinion, actually lots of them, and I thought I would share this one (I will do my best to refrain from sharing specifics from the book... everyone hates a spoiler!).

The best part of Vicki Forman's memoir is its honest brutality. The experience of parenting a micropremie is... unfortunately... not a singular experience. And Ms Forman's book could have focused on her heroics... the sacrifices, the successes, the 'triumph of the will' stuff. But instead, she paints a brutally honest portrait of herself, her experience, her son, and the medical establishment as a whole. She doesn't pull any punches, but... as a part of that "medical establishment" I don't feel personally hit. Many, many, many of the ethical and moral issues she presents in this memoir are not new concepts for me... I grapple with these issues every time a baby like this is born...

... how much is too much? when do you stop? what are the consequences of stopping, or not stopping care? what are we doing to families, and these children? why is that we (the medical community) can impose care on these patients, but when it comes time to remove care we require that parents be the ones to decide (nice position to put them in, ehe???)

The list goes on and on.

She is angry. Angry that she is put in this position, angry at the doctors, nurses, with choices that she can and cannot make. Angry at the situation, at the course her life has taken. And with a loss of perceived control that she feels she had (we all have this idea of perceived control... it really bites when you realize there is no such thing). With that anger comes overwhelming sadness, soul-numbing guilt, frustration, denial, vacillations between hope and fear, and emotional highs and lows that wear down any soul.

Grief.

She builds up and tears down her own arguments, her straw men.... and I found myself simultaneously agreeing and disagreeing with her. She presents her experience as a special needs parent... warts and all... and does not allow the reader (or me) to raise her up on high. There are failures, and successes, and everything in between. She is a real person with real feelings, real reactions... and they are not always nice and not always friendly and not always 'good'. But they are REAL.

And that might be what I loved MOST about this book. I don't need any saintly martyrs to tell me how to be a special needs parent. I don't need anyone saying "count your blessings" and "he has a special purpose in God's plan'". Nice thought, but thoroughly unhelpful. And frankly, I really don't think that... if God exists ... he is a micro manager. I love my son more than anything... probably more than myself, to be honest.... but I hate his disability. I hate the being scared all the time: of today or uncertainty of tomorrow. I hate the fact that I... as his mommy.. may never get to experience "normal" parenting (if that even exists... apparently it does at ECFE). My worries will always be different, and our fights for the J-man will always be MORE.

And that straight up pisses me off.... and that's okay. It is okay to be this human that I am.

This Lovely Life is truly lovely. Not in a traditional way, or easy way, or a safe way. But in a very, very human way.

Pia

Choices

So, it all started with a friend getting a new job...

She leaves her job. Her job is now open. And I could get her job. A job I would probably love to have, and one in which I believe I would be well qualified for. Hmmmmmm....

And so the conversations begin. My hubby is all for the new job, if it was offered to me... "great opportunity" and all. But here is the significant rub....

It is a position during the day, and we do not have daycare for the J-man.

Now, I have loved this... the no-daycare thing. I liked the idea that WE are raising Jonathan... as flawed and freaky as we are... and that we didn't have to send him to daycare. I have nothing against daycare, actually... and at this point I am really starting to believe that it might do him a world of good....

But lets face it:

I have control issues.

And releasing my language-challenged, cute as a button, 'special needs' boy to the care of strangers??? Please. I go to every speech and OT session. EVERY ONE. Me, in the room. I am sure the therapists roll their eyes when I leave. So I have some serious control issues.

However, we are coming to a crossroads with Jonathan. I see the gains he has made this summer... and they ARE kick butt.... but we can do better. And I am starting to seriously feel like peer relationships and social situations might be enormously helpful. Plus there is the other issue: my own growth and development. Three days before my due date with the J-man I was offered a kick-butt job within the hospital. More money, status, clout (well, a little more of each). And I turned it down because in the end it was more important for me to be with my little man. I wanted to be his mommy first. I still do. But I am starting to think that he doesn't need me quite the same way. That I could let go a little and see if he might spread his wings.

Ahhh... back to control issues....

So, I have no faith that any daycare nearby can meet his needs. Except one: St David's Child Development Center. This one has seriously good potential. St. David's offers a integrated daycare/preschool program which provides services to both typically developing and special needs children. They have a Special Needs Coordinator who specifically works with the teachers to incorporate the IEPs or IFSPs into the classroom. We toured the facility and it was beautiful. GREAT gym, wonderful playground, and in the classrooms there were lovely children. Children with hearing aids, children with down syndrome, "typical" children, happy children everywhere. Plus, the school provides private speech and OT on site. The problem? It is 40 minutes away... the wrong direction. So, do I take a new... full time job... and have a nearly hour and a half commute so Jonathan can go to this school? Is that good for him? For us?

Ahhhh...

Pia

With the Signs come..

.... more vocalizations. A LOT more vocalizations.

Suddenly Jonathan gets that sounds/vocalizations and signs "get me things".

Signing 'more..please..open' while standing at the door: Let's go outside.

Signing 'more.. please' while saying "Bub" with mom holding bubbles: Blow more bubbles woman!

Signing 'help' while saying "Huu" : Help me already.

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Signing 'help' while saying "Up mam" : Get out of bed and lets go downstairs.

For those on Sign Watch, our new signs include:

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Daddy

Milk (used for juice too)

Help

All done

Chips/Crackers

Choo-choo Train

For those on Word Watch, here are a few new words/vocalizations:

Ish (Fish)

Huu (Help)

Mam (Mom)

Star (really, star?!?!)

Bubb (Bubbles)

Bo (Boat)

Up

Dog

So much progress in so little time!! It is fabulous! Of course, we still have a long way to go but it is so encouraging to see that something is changing for the better for once!!!

Alas, with the signs come..... temper tantrums. The J-man has always been good at them... he has a flare for the dramatic. But their frequency has increased. I am chalking it up to his newly discovered language skills. He has enough 'language' to understand the concept "language gets me things".... but not enough to have all the tools to get his point across. PLUS, he is now starting to realize that even though his words have power.... mommy can still say 'no'.

And that just pisses him off.

I just love it.

Pia

As GEMM lurks...

If you understand why this photo

scares me, then you "get it".

The Green-Eyed Monster Momma is always lurking in the shadows. Sometimes her voice is a mere whisper in the void. An edge of sadness, loneliness or guilt that taints me. On good days, in good times, when Jonathan is doing well and we are seeing progress, she is faint and weakened. But she is always there, ready to rear her head and pull me down into the depths.

This weekend, she really got her hooks into me.

J-man and I went up to my parent's cabin this weekend. It is lovely... cool and green and relaxing. Jonathan loves to run in the yard, around the cabin and in the woods. But he most especially loves the water... to go on the dock and on the pontoon boat, look into the water and feel the waves. He is no happier when we are at the beach; at the water's edge, splashing and playing with the plastic boats. It is a great way to spend a summer weekend.

The cabin is located near some family friends' cabins, which makes for a lot of get-togethers and BBQs. The families work on projects together, go out boating together. I wouldn't be surprised if my parents retire near these friends and grow old together. These are lifelong friends of my parents. I grew up with their kids and they all have children of their own. Three generations of friends that are practically family.

Generally they are aware of Jonathan's issues. Of course, they do not know the depth and breadth of his delays, but I have explained briefly what is going on with him. Basically, I get pretty much the same response I get from everyone who isn't around Jonathan that much.... apparently, I am over-reacting and he will grow out of it. After this weekend they may refine their opinion... but then again, denial is a river that runs very deep.

Last night we were invited to a BBQ at their place. Jonathan was being a pill. His ability to tolerate the word "no" is very small and limited, and his temper tantrums are a work of art. I also think he was overtired and overstimulated by all the people and activity. He wanted to go to the water, to the boats, and get away from everyone. So, he and I sat on the pontoon boat at the end of the dock and watched the shore from afar. Adults chatted, children ran and played, a bonfire burned bright. And I sat alone on the boat with my son and felt so isolated and alone.

As it got darker and closer to dinner, I decided to bring Jonathan up to the house and endure the tantrum. Jonathan has a bit of the drama-king in him. He can throw himself down on the floor with the best of them. I have found that the best response in no response. Sit him down and let him rage... ignore and it will abate over time. Alas, the old ladies in the room (of which there were four) felt a need to try and 'fix' the situation. Advice whirled past me. Firmly, I said no... let him be... and thankfully my mom backed me up! So there I sat exhausted, my non-verbal tantruming two and a half year old son on the floor next to me.

I am used to being around other children of the same age as Jonathan who are developing typically. It is to be expected, and although it often brings GEMM out of the shadows, it doesn't generally fire her up. Rather, it comes into focus how behind Jonathan is, and a certain amount of despair fills my heart. But I have gotten better at pushing that aside and going on with the hope that someday those differences won't be as stark.

This evening was no different. Two other toddlers roamed around the cabin, one six months younger than Jonathan and one six months older. Both perfectly verbal and playing appropriately. They offered him toys and snacks (at their grandmas' urging), all of which we rejected with a whine and a flop by Jonathan.

One of these grandmas... a family friend of old who is not really known for her sensitivity and tack... was able to rouse GEMM to a full fury. As Jonathan lay on the floor, unengaged and acting so terribly 'autistic-like', this grandma called to her granddaughter and said "Hey Susie*, tell Pia 'I love you'."

And she piped up in this sweet little voice, "I luv you".

This 'old friend' laughed and said "Isn't that the sweetest thing you have every heard?".

And I think every organ in my body stopped.

It wasn't that Susie said it. She is very verbal. It is that her grandma... this 'friend'... prompted her to do it. To me. When my own son might not ever be able to say it, who was currently laying at my feet and moaning. It felt like a slap. It felt a deliberate 'na-na-ne-na-na'. Even GEMM was stunned. My escape couldn't be fast enough. I regrouped enough to make our excuses and bale. And as soon as I hit our car GEMM came out, crashing through my body and soul. There are no words to explain.

Later my mother said that she was sorry... that this 'friend' is flighty and non-sensibly and doesn't think. All true. But cruelty is still cruelty, even if unintentional. I have a 1000 things I wish I would have said... have done... to respond. I wish I had let GEMM out to do some damage... to inflict a little of the pain I felt. I didn't and I won't. Instead it will nest in me... and I fear what might grow.

Pia

*Susie is the name I have chosen for all cute kids who are supposedly better than the J-Man. If your name is actually Susie, please do not be offended.

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.

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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