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

Friends and Family

Jonathan at 6 months

One frustrating and confusing part of all this “diagnosis & intervention” business is actually dealing with other people. And by other people I mean EVERYONE… strangers, friends and even family members. Now don’t get me wrong… I love my family and friends… and strangers are, well…strangers. But when we started to notice issues with Jonathan’s development, I had a very difficult time deciding how to broach the topic with friends and family. Who do you tell? Who don’t you tell? What should my expectations be? And how do I defend… yes defend… our decisions for Jonathan?

Many moms I know who have a child with a developmental delay run into this problem. The moms on the Speech Delays board run into these issues all the time… It is a constant source of postings! And I have a few friends who have children with developmental delays who also deal with this… and we all grouse about it! After much thought and debate, I have narrowed down these reactions to the following:

The Doubters

These are the friends and family who think you are nuts. They tend to say things like “oh, he is just a late bloomer” or “you are just looking for trouble”. They will tell you stories like about their great Uncle Fred who didn’t talk until he was 12 and look at him now…. He is a nuclear physicist. Or about how Einstein didn’t talk until he was three. They tend to believe you are an overprotective, paranoid mom who has watched too many episodes of Oprah and reads way too much into those milestone charts. They will try and tell you to stop worrying, give it some time, and your babe will just grow out of it. They will make comparisons between your child and their child…. Say things like “oh, well, I worried that little Suzy was behind when she wasn’t walking at a year, but then she was a toddling nightmare at 13 months” or “you know, little Mark doesn’t say mommy either” (even though little Mark has a vocab of 20 words which he uses VERY appropriately).

Maybe these folks are trying to be helpful. You know, downplay your worries just in case you really are an overprotective, paranoid mom. Or maybe they don’t know what to say… they wanna make you feel better, but don’t have the words. Or maybe they are just stupid and insensitive.

I ran into a LOT of Doubters when we first had Jonathan tested. To lay eyes, he does look just fine. A normal happy boy. And he was quite young, so I was prepared for it… one does not normally hear of a 16 month old in speech therapy! Typically, my response has been something like this: “Oh, I HOPE so! Wouldn’t it be GREAT if that is the case??? But hey, it can’t hurt to start early… just in case”… and I smile. Because all of that is true. I would LOVE to be wrong. In fact, there is nothing I would like more…

The Helpers

Overall, these folks are great. They tend to have a child with special needs, or have some experience in the area. They believe you, and want to help. Occasionally the advice is wrong, or inappropriate… but their hearts are in the right place. And very occasionally there are a few of these people who don’t really understand your situation… but try… usually it goes like this : “Oh, we had something like that going on with our youngest. He didn’t know his ABCs until he was 5! We were so worried. But with extra work and tutoring, we got past it.”. I just smile and nod. What else can you do?

The Avoiders

These folks don’t wanna hear about it, don’t wanna talk about it, and tend to phase out of your life rather quickly. I am not sure if it is because they think it is catching, or they just don’t have the energy to deal with someone else’s problems. And that is fine… I certainly don’t need THAT negative energy around.

So what does one do? When we first realized Jonathan has issues, we did keep it fairly close to the breast. I mentioned it to my mother… and she had the Doubter reaction. I was looking for trouble, her grandson is perfect…. Actually, a great reaction for a Grandma! But, as time has gone on I see that she now sees what we see and is supportive. Still, therapy talk is still a bit taboo. We have friends who are very supportive, others who I am sure think we are nuts. We “came out” slowly. I think we needed to see how all of this was gonna play out. Now I am quite open about it. Still, it is difficult. I started taking Jonathan to ECFE classes this winter, and when we do the parent class time, I feel awkward. Those mommies talk about issues that we are not even close to worrying about… getting rid of the passy, beginning toilet training, etc…. I am so not even in that ZIPCODE. So it gets a little lonely.

Pia

Happy Birthday, Baby Boy!

Tommorrow is Jonathan's 2nd birthday.... Oh my, how time has flown! Sometimes it seemed like he would always be a baby, and now... at 2... he is offically a toddler! Milestones like this make me think about where he is developmentally and who he is becoming. It is so hard not to compare him to other children... I think all parents do this... and when your child isn't "meeting the milestones", your heart aches about it. I fear for his future. I question whether I do enough for him.... what more should I do... and would it matter? I wonder if parents who have "typically" developing children even think about these things.

On the other hand, Jonathan is truly the most delightful, funny, beautiful boy. He is good natured, curious, social, and loving. Every morning I bring him into bed with me (to try and get a few more ZZZs while he watches cartoons), and he will turn to me and press his forhead to mine and grin. He can be silly. He can be crabby, but is easily soothed.

He is our love. Happy Birthday, Jonathan.

Pia

Our First Word!

Jonathan at 4 months

I have delayed this blog for a a couple of weeks because I wanted to make sure that what we were hearing was real.... but it is official! We have our first real WORD! And it is.... dum-dum-de-dummmmm.......

Ball!

Well, really, BA ... the L appears to be silent. It took me a while to believe it, but he consistently says it when he sees balls, he plays with them... even if he sees one on TV. Katy (speech) and Kristin (EI teacher) agree with us. He is ALSO saying mama.... that is more sporatic, but I believe it to be true. He is also making soooooo many more noises. The other day it really sounded like he said night-night to his doll... but of course, I have not heard it again. He also made a "Kiiii" noise when he was trying to get me to pet the kitty. So we are just thrilled that we are starting to hear sounds that are more like words!!!

He ALSO has signed "more" a few times. It is inconsistantly happening, but the few times he has done it were witnessed by both our Speech and OT.

One of the interesting things about these developments is that Jonathan appears to have an easier time generating these words/sounds/signs when he is NOT prompted. They are spontaneous. When we ask him or prompt him to say or do these things, we have to be VERY patient and wait ... wait ... wait for the word to come out. And it may not. The interesting thing about this is that this actually supports an Apraxia diagnosis.

Developmental Apraxia of Speech (the Unknown "A") is a motor planning problem. Essentially, the brain has difficulty telling the body (in this case, mouth and vocal cords, etc) what to do to produce speech. It is a coordination problem.... organizing the movements, etc etc... It is not a motor problem in the sense of making movements. The muscles all work. But in Apraxia, the brain has a hard time telling the mouth what to do. That is the best way I know how to explain it.

Since it appears Jonathan can and does make these words/sounds spontaneously... but has trouble when asked to do it (he wants to... it is just hard) ... it makes sense that maybe it is a planning issue. Hmmm.... makes me think. Typically Apraxia is VERY difficult to formally diagnose before age 3. If our Developmental Pedi was right about him at 16 months... then he is the MAN! Props to Dr M!

Ahhhh... time will tell!!!

Pia

The “A” Words

Jonathan at 8 months

The other day a friend of mine at work asked me if we had a “definitive diagnosis” for what is going on with Jonathan. I laughed. It appears THAT is not something that we are likely to get for a while. At first that drove me a bit crazy… but now I am actually quite OK with it.

When your child has a “language delay” of any significance, you start to hear a lot of the “A” words. There is the Big "A" : Autism. It is on everyone’s lips nowadays… the ‘disease d’jour. Then there is Little "A": Aspberger’s Syndrome. It is like Autism’s little brother…. Some of the aspects of Autism, but not all. Then there is the Everyone-Has-It "A": ADD/ADHD. Enough said. And lastly there is the No-One-Has-Heard-Of-It "A": Apraxia.

Of course, there are other terms and possibilities:
· Receptive/Expressive Language Delay
· Developmental Language Disorder
· Pervasive Developmental Disorder (aka PDD-NOS)
· Sensory Intergration Disorder
· Overly-Worried Parent Disorder
· Just a Late Talker

The interesting thing is that when the child is young (less than 3 years of age) it can be quite difficult to truly diagnose any of these. Now, some might disagree. But the truth is that many of the behaviors that are concerning at one stage of development are perfectly normal and acceptable at an earlier stage of development. In addition, the root purpose of a behavior needs to be considered. For example, recently Jonathan started ‘hand flapping’. Now, hand flapping can be considered a stereotyped motor behavior.. one of the diagnosic criteria for autism.

(http://www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm)

However, you have to put the behavior in context! Jonathan has difficulty with motor planning… he does not clap his hand in midline, for example. So when he is excited he will wave his hands. The purpose of his ‘hand flapping’ is not self stimulatory. He is excited! Other kids might clap! In fact, other normally developing two-year olds will ‘hand flap’. NORMAL! I believe we all have “self-stim” behaviors. Nail biting, knee-jiggling, finger tapping. The issue isn’t the existence of these behaviors… it is the intensity and the interference of these behaviors in other activities of daily living. Playing with just the wheels on a car is fun!!! But if that is all you do, and you will not be engaged in other activities, and you have screaming tantrums when you can’t spin wheels on a car…. That might be a problem!

The issue with diagnosis in a young child is that the professional doing the assessment needs to truly understand appropriate development, what is ‘outside the norm’ but still acceptable, and what is truly problematic. Some behaviors that are definitely symptomatic of autism at 3 years of age are not at 2 years. Understanding the path of normal development and how one delay (like language) can affect others areas of development (like social skills) is complex and highly dependent on experience and knowledge.

So, what do you do when you start down this path of diagnosis? For Jonathan, is this autism? PDD-NOS? Apraxia? Just a late talker? And what do these terms mean for Jonathan’s life? What do you do?

I have decided that it doesn’t matter right now. What matters is that I am sensitive to his needs… that I play with him in the way he needs…that we get him the right supports. Terms and labels will come on their own, but they will not define him. They can’t…Jonathan is far too Amazing for that.

Pia

The Invisible Mother

Jonathan at 1 year


My sister-in-law Angie just sent me this via email I don't know the author, but I want to tell her that she is my hero. I hope this makes your day.

**************

The Invisible Mother

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously, not.

No one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The invisible Mom.

Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this? Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated sum a cum laude - but now they had disappeared into the peanut butter, never to be seen again. She's going; she's going; she is gone!

One night, a group of us were having dinner, celebrating the return of a friend from England .. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe .. I wasn't exactly sure why she'd given it to me until I read her inscription:

'To My Dear Friend, with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work:


No one can say who built the great cathedrals - we have no record of their names.


These builders gave their whole lives for a work they would never see finished.


They made great sacrifices and expected no credit.


The passion of their building was fueled by their faith that the eyes of God saw everything

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees' I closed the book, feeling the missing piece fall into place.


It was almost as if I heard God whispering to me, 'I see you. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.' At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life.


It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride. I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on.


The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree. When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 i n the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'you're going to love it there.'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right.
And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Off-Topic: Oprah, Our Guru

Newborn Jonathan & I

I’ve been watching Oprah this week. Every year she does this Best Life Week thing… you know, reach-for-the-brass-ring-you-too-can-be-fulfilled shows with advice on how to make your life good. I like Oprah, don’t get me wrong, but sometimes it is so apparent that she does not live in our world. Anyway, this year she started out her Best Life Week thing with a confession. She had let herself go. Gained weight. Stopped exercising. Fell off the wagon.

Join the club.

After Jonathan was born, I lost a vast majority of the baby weight rather quickly. I think breastfeeding helped. But once that stopped, my eating-and-no-exercise lifestyle came back to bite me in the butt. My big butt. And now I struggle with a weight issue. Like, a 30 lbs weight issue.

So as I listen to Oprah (and Dr Oz and her other teams of experts) I recognize that I should really take charge. Love myself. Make myself the priority.

Except WAIT…..oh yeah, I forgot. I am a MOMMY! Darn it… that is right! I have a two year old! With therapy four times a week and ECFE once a week, minimal communication skills and who doesn’t go to daycare. Oh, and I work evenings, 3pm-11pm. And I get up between 6 -7am with my darling boy. Oh yeah, and my house generally looks like a daycare vomited all over it.

Maybe I could work out when he was napping. Oh wait…. He naps at 2 pm and I go to work. Hmmm. Maybe I could get up at 5:30am and work out. Oh wait… that interferes with my sleep since I don’t go to bed until midnight. Dr Oz would NOT approve. I could take him on long vigorous walks…in 10 degree winter weather.

Maybe I could just stop eating. No chocolate, no naughty food.

Oh joy

One of the issues I have seriously struggled with since Jonathan entered the picture is finding any “Me” time. I know that this is a perpetual complaint by many mommies. I am not alone. But I still can’t quite figure out how to balance all of the things Jonathan needs from me… and he needs them NOW… and my husband, my house, my job, and me. I have read all these articles and heard all these news stories about how overworked mommies can be… especially if they have a child with special needs… but until you live it you just don’t know.

It feels like Jonathan has such a narrow window of time to progress. Of course, I know this isn’t true. But that is how it feels. I feel like “Me” time is selfish. Plus, and this is the truth… I am just plain tired. When I do get time… and I do, let’s be honest… I just want to sleep and eat and watch TV and clean my house. Blog on the computer (HA!). Not JOG!

When you have a child who has special needs, I think priorities shift so radically it is hard to put life into any real perspective. Suddenly, nothing else seems as important. However, that is just not true. My weight, my marriage, my home, my job, ME... they all still matter. Alas, I have no advice here. In fact, I am open to some. So if anyone has some tips on how to maintain a balanced life with a toddler who has a speech delay, I would love to hear!

Pia

Finding a Therapist OR The Quest for the Holy Grail

I am a member of a couple of mommy-support boards (Hi Ladies!). These are lovely, amazing mommies who are dealing with a lot of the same issues as we are. One of the most common ‘threads’ on these boards pertains to “getting a therapist”. What kind? Where? How much $$$? What do you do if you don’t like your therapist? What if your child doesn’t like therapy? Etc, etc, etc…

We are lucky. When I called St David’s School (my old work), we were able to be evaluated by a Speech Language Pathologist (Katy) pretty quickly. At that evaluation, we fell in “like” with Katy. She was great with Jonathan… playful and fun. She spoke to us in terms we could understand, and she was open to working with a child so young. He was only 16 months at the time. Of course, St David’s in a non-profit private agency. That means insurance. She quickly submitted a request for therapy services with the evaluation report. Thankfully, we were approved!! We still had to pay co-pays… and drive of nearly 20 miles one-way… but having a therapist that Jonathan responded to was sooo important to both of us. She also recommended Occupational Therapy, which we started in the fall with Janet. Expensive… $80 a week for all this therapy (our copay). But he responded to them and was engaged. We decided we couldn’t skimp.

In June, the Birth-to-Three program had finished all of its evals and started sending out an Early Intervention teacher to our home. It was lovely to avoid the drive and the cost (FREE!), but we struggled a little with the teacher. She was very nice and very well intentioned. She tried so hard to work with Jonathan. And I really did want it to work out with her. But after about 5 months, things between Jonathan and the teacher had not gotten better. His progress was slow, too, and I was getting concerned that he wasn’t getting enough out of the sessions. He would be so avoidant and get so easily frustrated. Plus, she had her agenda… Her plan… and did not take the “child led”, floortime approach I had been reading about (more later). She expected Jonathan to do things he was just not ready to do… sit at a desk (at 18 months??)….

So, I fired her.

Ok, that is harsh. Actually, I called up the Care Coordinator for Jonathan’s case and asked if it would be a very big deal to try another teacher. I felt awful… she tried so hard! But I was going with my gut. I had to see if he could work better with someone else. He worked so well with Katy and Janet. I knew it was possible.

And then came Kristin. It was LOVE at first sight. She engaged Jonathan right away!!! He giggled and laughed the first day he met her. He NEVER does that! He started following her directions. She made some suggestions to us the first day… which we implemented right away… and he responded immediately! In fact, as a result of those responses, Jonathan has started down a whole new track! In the last month we have made more progress with him than we have the 6 months before! So… we feel like we have won the EI Teacher Lottery! She was willing to come more frequently, work with us more, and start WHERE HE WAS. It is wonderful!

I don’t know if I can pass on any great wisdom for advice about getting good therapists. I think the only things I can pass on are that you have to trust your gut. Ask questions. If a therapist is doing something you don’t understand, ask. Sometimes there is a method to the madness. BUT, feel free to challenge them. I really feel that the therapy needs to be more of a collaborative effort between the parent and the therapist. Be involved with the therapy. When we first started speech therapy, Katy wanted me out of the room. Well, Jonathan was 16 months old. And if you know ANYTHING about a 16 month old, they do not appreciate being separated from mommy. So I stayed. And I still do… because now I am a PART of the therapy. As I should be… I am with him all the time. I work with him at home. In many respects, what mommy and daddy do at home is WAY more important than what happens a few hours a week in therapy. So take every opportunity to learn what you can!

One great resource for mommies is the http://teachmetotalk.com/ website. The DVD on this website is an awesome resource for working with your child at home. Stuff that MOMMY can do!

Whew… all for now!

Pia

Welcome to Holland

Jonathan at 2 months

This "poem" was at the back of a book I just read, and I thought I would pass it on. I like it... iit makes me think about appreciating the way Jonathan is... his spirit... instead of mourning his issues. Of course, I still would like to see Italy... and I am gonna work to bring Jonathan with me :)

WELCOME TO HOLLAND

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

The Initial Evaluations: A How-To Guide

Ok, when I started to suspect that something “wasn’t quite right” with Jonathan’s development, I knew that people would think I was crazy. Or paranoid. Or both. And with WAAAY to many years of education in child development, I was a prime candidate for the “Looking for Trouble” award. But when that naggy little voice just would not stop, I knew I had to have him evaluated. At the very least professionals could tell me I was crazy and paranoid.

So, what do you do when you have concerns about your child’s development? Whom do you turn to?

Good Question! Not that I have any answers, but here is what I did.

1. Emailed my old boss. Just for the record, I have a PhD in Developmental Psychology. Yeah, I know… see what I mean about too much education? My specialty is neonatal development, but while I was in school I worked as a clinical coordinator for an Early Intervention/Assessment Clinic for Autism. So my fears were not based on NOTHING. I emailed him my observations and concerns. He agreed I had reason to be concerned and recommended getting him evaluated by a psychologist or developmental pediatrician.

2. Emailed our regular pediatrician. Great guy, but he doesn’t check his email fast enough. I had already moved on to step 3. Lucky for me, he concurred with my concerns and recommended my step 3… which I had already done. Yah me!

3. Made an appointment with a Developmental Pediatrician at Children’s Hospital. Since I work there, it was easy for me to find one. Alas, it was April and the earlist appointment I could get was end of June. Not gonna fly, brother! TIP: If there is a long wait to get an appointment with any specialist, ask if there is a waiting list. Make your appointment, but then get on that waiting list and if you get that call… GO! Drop everything! Just GO! I did, and we got moved up to the middle of May! Yah us!

4. Made an appointment with a Speech Language Pathologist. I made it at the same time I made the Developmental Pediatrician appointment. We had that evaluation at the beginning of May.

5. Made an audiologist appointment. I mean, really…. What a simple answer if he couldn’t hear. (He can).

6. Made an appointment with Early Intervention. Every state is different, but ours is a Birth to Three program through the county. They did an initial screening, and three different evaluations. It was VERY through! We started this process at the beginning of May and we were done by the end of May. Let’s just say April and May were very tough months!

So here are my recommendations to anyone who has concerns about their child’s development:

Like any good high school cheerleader could tell you: BE AGGRESSIVE… BE -BE AGGRESSIVE!

Talk to your pediatrician first. They can often refer you to the right professionals in your area. We used a developmental pediatrician, but a pediatric psychologist would do well too. Even some school psychologists have the experience to evaluate young children. But ask questions about qualifications!

Call your local Birth-To-Three agency. If you aren’t sure how to locate one, call the school district. They should be able to refer you. Their services are free or low cost, and can often be done quickly.

Consider getting an evaluation from a Speech Language Pathologist. Sometimes you can get in quicker and often these evaluations are covered by insurance.

Don’t expect solid answers. Seriously. We still are not 100% sure what is going on with Jonathan. BUT… and here is the kicker… we have him in therapy and are learning how best to help him learn. It is a starting point. The evaluations and opinions are going to change. As we learn more about Jonathan, we get more confident in our feelings about his needs and are able to be advocates for him.

Pia

Our Story in a Nutshell

Jonathan at 7 months

How to begin?

Girl meets Boy. Girl and Boy date long distance for a year. Girl quits job at University and moves to Texas (eekk!) to be with boy. They get married. She becomes a neonatal nurse and drags him to Minnesota (ahhhh). They buy house and settle in. And, then comes Jonathan!

In many ways this is a journal about Jonathan. Born February 2007, the long-awaited-for baby was a complete blessing for us. Still is. And as he is growing and changing, so are we. This journal is meant to detail the joys and struggles we have had as Jonathan grows. Jonathan has presented us with so many life-lessons, and we are continuing to learn as we go.

Ok, I will admit it. I was ready to be done being pregnant! I mean, you can only go so long without being able to lay on your back. Or go an hour without peeing. I was huge in only the way a 5 ft 2 in woman can be with an 8 lb 4 oz baby boy in her belly. It wasn't pretty. So, we induced on my due date. And, after 12 hours of labor, 3 hours of pushing, and one vacuum, TA-DA... Jonathan Arrived!!

He was beautiful from day one. Still is. The kind of pretty that makes people in Target stop me to comment on him. And while Dan and I were completely and utterly exhausted for a full year, we have never known a love more profound than him.

When Jonathan turned one year, my paranoid-mommy-with-too-much-education came into full force. Don't get me wrong.... I was as neurotic as any new mommy. But Jonathan's communication skills were a big fat zero. No pointing, no waving, no jargon, no words. No gestures of any kind. His engagement with us was inconsistant at best. Some days he was all smiles and interaction and eye contact. Other days, it was a struggle to get him to "be" with us. Of course, my concern was the "big A". But I waited. He was still struggling to learn to walk, and I thought maybe we would see more progress after he hit that milestone. But, by 14 months he was walking (like a drunk... but walking!) and there was still zero progress in the communication department.

So, I hit the ground running. I contacted old collegues. I emailed our pediatrician. I made appointments at Children's for hearing screenings and a Developmental Pediatrician. I called my old work and made appointments with a Speech Langauge Pathologist for an evaluation. I contacted Early Intervention in our county for a screening. I was a madwoman. Alas, while many waiting lists existed, I was persistant and was able to get the initial screenings done by the time Jonathan was 16 months.

Alas, the news was not good. At 15 months Jonathan's language development was moderately to severely delayed. The Developmental Pediatrician was concerned about possible Dyspraxia. The Early Intervention professionals were concerned about Autism. I cried. And cried. And freaked out. And cried.

However, that was then. This is now. He is 22 months, still delayed, but making progress every day. We still don't have a definitative diagnosis. The Developmental Pediatrician still thinks dyspraxia. But this next year will be an important year for determining that. As time has gone on and we have worked with all the professionals (Speech Therapy, OT, Early Intervetion, etc), I feel more and more confident that... regardless of the outcome... Jonathan is far to happy and social to let this little blip in the road be that big a deal.

I will continue to use this "blog" to inform and educate others about language delays. And, I will record our journey. Hopefully you will find something in it to help or inspire! Or at least not bore you!!!

Pia