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