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