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