Tag Archives: MEEI

A Whole New World

iep4At least that’s what we’re hoping now that J is 3. It’s not that turning 3 has any particular special qualities our middle child was supposed to wake up with, but since he qualifies for special education services, by law in the commonwealth of Massachusetts J is now attending our town’s integrated preschool.

It’s a double-edge sword being told your child needs special services. I admit I fought for this. I’ve been asking for at least 2 years to get him help and was largely ignored by our previous pediatrician. So to have the process occur and have him accepted into the program has made me feel validated. The process was swift due to the timing of his birthday, so it’s been kind of difficult to wrap my head around. However, I have to share I feel so much better knowing that I’m not completely crazy after dragging him to doctor after doctor after doctor trying to figure out what is going on. This has also made me sad because I wanted more than anything to be told “there is nothing wrong with your son.”

The old pedi kept saying B was doing too much talking and that J would “catch up.” But we knew we had a bigger problem on our hands than the older sibling who does all the talking when we learned he wasn’t hearing anything. I mean, if you can’t hear then you won’t talk. And if you basically couldn’t hear anything the first 15 months of your life, then you’re at least a year behind.

And that’s what the assessments – yes, more than one assessment – confirmed. While J is able to do some things above his actual age, more often than not his level of development is below average. Specifically, he’s more like a 23 month old instead of his actual age of 35 months.

Reading that made me feel sick, but I admit it wasn’t a complete surprise. If J had not continued to miss certain milestones or demonstrate some speech shortcoming – none of which were perceived by his old pediatrician as particularly problematic – we might never have looked into private, specialized services. Our experience is a testimonial to be your child’s advocate and go with your gut. Even if that means getting bad news it’s really good news, because no news is even worse, in my opinion.

Sweet J at the end of his first day of school.

J at the end of his first day of school.

Now that we had a diagnosis and a plan and J is formally in the system, I want to focus on the long-term. Unfortunately, that’s not really the way it works. Our short-term goal is to make sure he’s prepared for Kindergarten. We do not want to hold him back a year because he’d be in the same class as his younger brother. And while that’s not the end of the world, it is not ideal. So we’re working hard to make him better. J will continue with speech therapy from Gift of Gab 2x a week, but he’ll also receive speech therapy at his new preschool 3x a week. We will also work with him at home on his speech and vocabulary.

Today was his first day and it was a long one starting at 8:30 at his current playschool before heading over to the new preschool. But when I picked him up this afternoon he was all smiles. His wonderful, patient, kind new teacher included a progress note and said he did great. Seeing him looking like this makes me feel better about all that has happened and the bumpy road it took to get here.

Yes, it’s a whole new world for us. It’s a special one, too.

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Can I Get A Witness

J and his yogurt addiction began well over a year ago...

Last night was the first night in I don’t know how many nights that everyone in our home slept through the night. Hallelujah! 

Although it’s technically too early to tell, I think we have a little pill called Prevacid to give the credit to. We gave J his first dose after dinner and maybe it was a coincidence, but I have hope it is what did the trick.

I am convinced J has some acid reflux and it makes going to sleep and eating painful. Short of holding him upright all night in our bed or on the couch – and yes, we done it more times than I care to admit – the only other thing is give him a bottle of water to soothe him. During the day, he barely eats. Sometimes he’ll go days, yes days, with nary a nibble except a few raisins, a couple bites of popcorn, and some Activia yogurt. Everything else is refused. Then on other days, like some binging college girl, he will inhale a mind-boggling amount of “normal” food in one sitting only to have the worst gas on both ends and then no more eating again for days. It’s been a nightmare rollercoaster for nearly 2 years. He used to be the best eater, too. This summer he lost so much weight I took him to Children’s to make sure he didn’t have something like Celiac disease. Turns out he does have a minor egg white allergy, and his diet was modified slightly by the gastroenterologist. Since then we’ve sought out sleep specialists. We adjusted his mattress. We changed cribs. We modified his diet again. We switched diapers. We did everything except have him tested for acid reflux because our pediatrician didn’t think it was warranted.

“He’ll be fine,” she pooh-poohed me. “Just you wait and see.” Oh, I’m certain he will be more than fine, thank you very much; but why should we wait when we’ve seen zero progress? What if we need to do something now to prevent other problems in the long run? I know it takes some children a while to talk. Sister K apparently took a while to be vocal because I was doing all the talking for her as a child. That said, she didn’t have months of raging, recurring ear infections that might have damaged her hearing like J. I already feel guilty for not pushing my pedi at the time for not recommending ear tube surgery sooner. Here we are, nearly a year later and J still doesn’t speak well. In fact, he barely talks at all in clear English. It got to the point that we finally had his hearing tested at MEEI. He can hear but the audiologist recommended an intervention with a speech pathologist. J will have at least one more round of tests because they weren’t very conclusive, but in the meantime I made the speech appointment. In fact, I completely switched all the boys to a new pediatric practice that has a speech pathologist on staff because I didn’t feel our last pediatrician was putting enough resources or concern about his lack of speaking and weight gain.

I’m convinced somehow, someway all of this is tied to the reflux. So, no, I’m not going to wait and see like the former pediatrician suggested. We got the divine intervention and the hope we needed last night with a decent night’s sleep. He’ll take a Prevacid daily and along with some hard work with the speech pathologist, his audiologist, his gastroenterologist and our family I believe we’ll get our Sweet J back up to snuff on his speaking and eating faster than we can say “Stop talking and eat your dinner!” Can I get an Amen!

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Update:: Since I first wrote this morning, I had to check with our insurance company to make sure the speech pathologist is in our network and J’s visits will be covered. As the agent was going over our benefits and double-checking my request, her tone made me wonder if we were going to be denied and forced to find someone else to help J. Thankfully that is not the case. We are blessed to have the very best health insurance. I mean, really, who says that about their insurance company? Thank God for mine.

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Jibber Jabber J

J talking to the ducks

J is becoming quite the talker. Ok, jibber-jabber is probably a better description. He really didn’t begin hearing clearly until after he had surgery for ear tubes at 15 months. His ENT said that basically anything up until that point was like hearing underwater.

I’m still concerned that he doesn’t speak clearly. I’ve even worried he may have some hearing loss. At the very least, I expect he’ll need to have speech therapy at some point. You can guarantee this will be one of the very first things I discuss with his pediatrician at his 2 year well visit in November. I have reached out to the ENT though and perhaps will get in a visit with him in advance.

He does get frustrated because I know he understands us, but we simply don’t always understand him. Milk and juice sound the same to me, so we do a lot of pointing and constantly repeat words to him in hopes he’ll pick it up and say it clearly. He is wonderful with ‘please’ and ‘thank you’ so at least he’s polite. As his mother, of course I’m proud of that!

All in all, he’s in great general health. J is our sweet boy who loves to give hugs and kisses. He still naps well, but eating a diverse menu a bit a challenge. Thankfully, he no longer has issues like he did earlier in the summer with some foods, but we were made aware he might have an egg white allergy. More details to come on that front soon.

I’ve often felt J hasn’t  had enough of our attention since we learned of C’s impending arrival. Between taking care of C and tending to the demands of B, poor J has been left on his own in some ways. Typical middle child. I’m really looking forward to some one-on-one time with him when we travel to Texas later this week for MP’s baptism. Maybe, with some time for just the two of us, we can work on his words and he’ll bring back a y’all for the Yankee family. Fingers crossed!

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