The Elephant in the Room

 

Mummy Gus

Anyone who knows me well, knows my thoughts of pacifiers being used with children over the age of one. I'm all for parents doing what they feel is best and necessary for their kids, but I don't want to see it. I especially don't want to see a four year old hanging out at a store sucking on a paci. It's just gross to me. I honestly don't know where my intolerance for pacis has come from, but trust me, nothing sets me off quicker than seeing a paci in a child's mouth (I have no issues when the child is less than one). 

Anyway... it's related to what I'm about to share (trust me). Last week when we found out about the SPD- SS diagnosis, I made it a point to do as much research and reading as possible on the topic. I talked to my friend Melanie (an OT) and asked about some suggestions and whatnot for Gus. One of the things that he does excessively is chewing on/sucking on his shirts. He has the collar portion of his shirts in his mouth at all times. 

I told Melanie about this and that we have to tell him to stop chewing on his shirts. She said that a lot of the time, it's an instant way for him to regulate his sensory system. Her explanation made total sense, and  I asked her for some suggestions. She gave me the link to a few therapy sites and I was able to get some different things to try with Gus (not just for the chewing).

One thing that I found on Amazon, in the "chewelry" department is this elephant necklace. The idea is that the child wears the necklace and then chews on the trunk of the elephant. It's supposed to be like chewing on a shirt and the elephant and necklace is made of shirt material. I figured I'd give it a shot.

Well... today Gus chose not to nap (AGAIN-- grrrrrr) and decided that he wanted to hang out with me all afternoon. I had some things to do on the computer, so he brought his chair and iPad into the office and sat and played while I worked on some things (like ordering our tickets for Disney eeeekkk!!!).

 

Enjoying some popcorn for a snack

Then the mailman came and I went to get the mail. He delivered a package from Amazon. I knew immediately that one of Gus's Christmas gifts was inside, but so was the elephant chewelry. I carefully pulled out the necklace and showed it to him. He was hesitant to put it on, but once I explained that he can chew/suck on it, he was so happy!

 

Checking out the elephant

 

Into his mouth it went and we began popping the packing bags that came with the box

 

So happy with his elephant

He (obviously) loves the necklace. It's better for him to chew/suck on that and let us throw it into the wash, than to constantly be nagging him to stop chewing on his shirts. However, Steve made a comment about it looking like a paci and I have to admit, that it DOES. It's NOT a paci and not being used with the same purpose as a paci, but it does irk me a little. I guess it's a matter of me getting over my issues and just being elated that we've provided him with something that can help regulate him.

I don't plan on taking the elephant out in public, but it'll be used around the house for sure. We have one other piece of chewelry coming for him to try and if he likes that one, we'll use it in public as needed.

It's Like A Puzzle, Right?

 

I adore these two!

A good friend of mine that I met when we lived in NC, messaged me on FB about my blog post about Gus being diagnosed with SPD. She's an OT and said that if I had any questions, she'd love to talk to me and help in any way. I decided to take her up on her offer.

So after our morning playdate, and shopping at the Goodwill (I had no idea how quickly they turn over merchandise!), we came home and played for a bit and then once I put Gus down for the nap that he never took (LOL), I gave her a call.

She was super helpful and helped explain a lot of things that I have been wondering, but have no one to ask yet. We have to wait until our BCW case worker calls us to set up anything with a speech pathologist. I think after talking to Melanie, I'm going to definitely ask about doing speech for like a month and then OT for a month and then we'll see what we should do from there. I have a nagging feeling that if we do the speech for a long period of time, it'll just delay the help needed with the sensory issues. At least by doing OT, we can still get some help with speech, since most OTs also have some speech things that they can do.

It's all a very fascinating world and one that I never thought I'd be in. He's not autistic (I don't think anyway), and Melanie said if he was, they probably would have mentioned it. So, I guess that's a good sign. He doesn't have all the quirks that come with all parts of sensory processing disorder.

Melanie told me about some things that we can do with Gus while we're waiting to see an OT. She also sent me some info tonight and I went onto a therapy website and ordered some things that I think he'll really benefit from having. I'm hoping that Steve can submit the receipt to our flex-spending account. We'll see.

I feel like the puzzle pieces to represent autism are so appropriate. While Gus doesn't have autism (at least I don't think he does), SPD is something that many children with ASDs have. It's a complex disorder and something that many don't understand or see as real. I guess the more I'm reading and researching about it, the more real it's feeling, and the sadder I get knowing that there are people who don't think it's real. I guess until you've got a child who is suffering from something that you can't see or understand, you can't say if something is legit or not.

I feel like it's a big puzzle and I'm slowly getting various pieces and I'm left trying to put it together and find out what it all means. My hopes are that once we have contact from BCW, we'll get some answers (clues to our puzzle) and have a better idea of the whole picture and what's next to come.

For now, I'm eagerly awaiting my books to arrive that I ordered from Amazon. I'll read them and try to start creating a healthy "sensory diet" for Gus. Those are two words I never knew about before Monday, and here I am using them like it's been something we've been doing for months. A sensory diet includes things that we (mainly I) can do with him during the day to keep him busy, active, happy, and balanced. Having a good OT would be awesome because they can help create the sensory diet for him and I'd just have to follow it for him.

We shall see what comes. Melanie said it might be worth it to just find out the name of a good OT, meet with them and pay whatever is needed (we have a $1,000 deductible), let them get us started with what we need, and then not worry about the OT until we've done the speech for a while. I don't know... not sure what we'll do. I do know that our insurance doesn't cover a lot once we actually do meet the deductible (25 total visits a year from all therapy). 

Don't get me started on why I think we should have universal health care... but honestly, the fact that I have to pick a therapy for my child, because we can't afford more than one... it's ridiculous. But anywho...

 

The trampoline has been amazing for Gus. He jumps on it for several hours a day. Sometimes while watching MMCH, others while listening to music and dancing.

 

Gus and Steve at dinner on Tuesday

 

He loves bead mazes!

So as the picture becomes clearer, I'll be sure to keep y'all updated. Please keep us in your prayers as we head down this unfamiliar path. I pray that God equips us with all that we need to make sure that Gus is happy, balanced, and having all his needs met.

10-22-12 He Qualified!

We took Gus to the North Fulton Training Center in Sandy Springs today to be evaluated for Babies Can't Wait. I had hoped they would observe and evaluate him and then report back to us that he did indeed qualify. Hang on, let me back up a minute.

In my deep heart of hearts, I've felt like something has been "off" for a while. Gus still speaks a lot of gibberish and while it's somewhat normal, it's not progressing. He doesn't use pronouns (doesn't say, "Gus go" or "Me do" or "Mine") ever. He doesn't even refer to himself if you ask him what his name is. If you say, "Where's Gus?" he will point to himself and say, "Gus" but he doesn't just tell you that his name is Gus.

So anyway, while I have known that something isn't right, I had a part of me that was hoping that it was just in my head and they'd tell me that he's absolutely fine. After all, when I told his pediatrician at his two-year appointment, that I was concerned, she didn't hesitate to write a referral and said if a parent is concerned, she let's them have a referral. But she herself, wasn't concerned and didn't bring up taking him for a referral.

I wasn't sure what to expect today. We walked in and there were three individuals. One was LaTasha, and she's the person that I talked to on the phone to set up the evaluation. Then there was the evaluator named Rebecca, and then a guy named Phillip who would also be doing some of the evaluation.

Right away, Rebecca had Gus join her on the floor and Steve went down too. She asked Gus to point to a few pictures for her (and he did) but then he saw the train and wanted that. While they were on the floor doing that, I was asked questions by Phillip. The whole time, LaTasha was at a computer just observing and taking notes.

We were there for an hour and a half. When we started, Gus was somewhat hesitant and nervous/anxious, but after an hour or so, he was himself and started into his happy gibberish chatter. I'm glad they got to hear it. He did really well with the tasks that they asked him to complete, and after about 90 minutes, they started to compare their scores/notes.

I don't remember the exact numbers for the five areas, but 85-100 is considered normal range for the five areas. For gross-motor, he scored 100. We weren't surprised by this at all. His cognitive score was in the 90s, but then the auditory processing (how well he listens and follows directions) was like 84/85 (not enough to be a moderate delay). I kinda knew his speech and language would be delayed, but in order to qualify for BCW, you have to either be significantly delayed in one area, or moderately delayed in two areas. 

His speech and language was like 79 (moderately delayed) but then his sensory processing was also 79/80. I was shocked. So he was moderately delayed in two areas, and hence, he qualifies for services through BCW.

So what does this mean? I was completely shocked by the sensory processing delay. However, when Rebecca explained it, he's basically sensory-seeking. The medical term is sensory modulation disorder. He's hypo-sensitive. Several of the things that I just thought were either normal for a toddler, or just because of teething, are aligned with being hypo-sensitive. For example, he sucks on his shirt (he'll get as much of the neck area into his mouth and wad it into a ball and suck on it. We have to tell him to stop chewing on his shirt. Sometimes, he sucks on his arms (giving himself a hickey). He puts things into his mouth all the time (we assumed it was teething). He'll bang his head on the floor occasionally, sometimes walks on his toes (when nervous, and though it was just a quirk- but it's what hypo-sensitive kids do). He also loves messy play and loves play-dough. He likes spicy food, he loves swings and slides and anything with a lot of movement.

Other things like the tamborine at Rigg's birthday party and it freaked him out... and loud noises and the vaccum... all go with this. Being scared of elevators and physically clinging when in one (which he does), and being a thrill-seeker, all go with this. Loving being tossed in the air, wrestling, jumping on furniture, trampolines, his pillow racer... running and hopping and galloping instead of walking. 

So anyway, the list is long of things that we thought were just normal but turn out to be sensory seeking traits. The good news is that we will receive services to help. We can only pick one area for our focus, and for now it's the language. He was evaluated at one year and nine months. Just under a year behind. So they want to get that under control, but they said that often times, once you get the senses organized, language will bloom. We're hoping that's the case.

We'll get a call within three weeks from our coordinator and then we'll set up our therapy. We can go a few months with S&L and then move into Sensory Processing if we want. The good news is that he's qualified and isn't three yet. We'll be able to transition him to Fulton County Schools at age three and they'll continue his services at our local elementary. He has been diagnosed and will continue with services until he no longer needs them.

Rebecca said that her son was SPD- Sensory Seeking and got it in check before school started. My hopes are that we can do the same. I fear that Gus will be labeled a bad kid because he's not the kind of kid who will sit still and focus. It's been my fear all along. Fortunately, we'll have plenty of time to work on it (and his language) and can make some progress before he's school-aged. It makes me even happier that I've got an elementary background and plan on keeping him home for preschool.

I think right now, if he were in preschool, we'd be having a lot of problems. I don't want him to dislike school or feel like he's not liked because a teacher can't tolerate his personality. It's why I don't like his gymnastics teacher-- but that's a different blog post.

I'm going to head to bed. It's been a long day. I've got a lot of reading to do on SPD and OT and I want to familiarize myself with how I can best help Gus. 

We have our home study tomorrow (I guess technically it's today since we're past midnight)... wish us luck!!!