Angels Abound - Just Keep An Open Eye

Mister Man is a special needs child. As "normal" as he appears to many, especially at first glance, he isn't. He's autistic, although happily he's very high functioning and we're anticipating that he'll grow up to live a "normal" productive adult life, albeit with a quirky personality. He isn't your typical child, however, and I've known that for a long time.

I was part of a playgroup from the time he was about eight or ten weeks old. Most of the moms in the playgroup had children who were a few months older than Mister Man, but they were relatively the same age. Even when he was a year old, however, it was apparent that he wasn't the same as the other children in the group.

He didn't play the same way they did, side by side and often interacting. He was off doing his own thing in his own way. As much as I tried to tell myself that it was because he was a little younger than they were and because by that point, he was just about the only boy in a group filled with girls. Of course he was going to be a little different.

As the other children all talked and he remained silent, that little niggle poked at me. As the other children started picking up crayons and wanting to color while Mister Man's interest in color remained purely walking around with a yellow block in his mouth, that niggle prodded. As they made friends and he didn't know how to interact with them, I felt it. I knew.

My friends didn't say anything to me, of course. Who's going to be the one to ask what's "wrong" with your child, after all? I could see the looks that they'd give him - and me - periodically after he'd done something that just wasn't typical. There's something wrong with my baby, and even when my pediatrician assured me I had nothing to worry about, I knew.

Somehow, the right people are always in our lives. We just have to be open to letting them in. They are the people who you can call in the middle of the night when you just can't deal anymore. They're the ones who show up at your house with exactly what you need, even when you didn't ask them. They're the ones who call just to check in and offer a shoulder, not even knowing you'd need it.

I was lucky - am lucky - to have many friends like this who appear at just the right times. When Mister Man was just over a year, one of my friends continued to open up to me about her daughter who is a few years older than Mister Man. Her daughter had troubles in preschool, she was challenging for my friend at home, and for years she knew there was something but didn't have the help or support she needed. It wasn't until her daughter was four years old that she learned about the preschool program that would be the start of a 360 change in her daughter. Finally, her daughter was diagnosed with an auditory processing disorder - it wasn't that her child wasn't behaving but that she quite simply only heard a portion of what she was told and it made no sense to her. The therapies she received both in preschool and elementary school made a huge difference for her.

I'd never heard about preschool programs like this - and besides, Mister Man was only a year old, so he wasn't going to preschool any time soon, and besides, her daughter's issues at the time were very different from Mister Man's issues. My friend was the one, however, where I could open up about my concerns regarding Mister Man. She was the one who encouraged me to share what just didn't feel right to me, even after that pediatrician told me everything was just fine. It wasn't just fine. He wasn't just fine. She shared information about the Early Intervention program that exists not just in Illinois but throughout the country in various configurations. She was the one who encouraged me to keep after my pediatrician and ask him specifically about having Mister Man tested for the program - something that the pediatrician initially brushed off saying there was no cause for concern but finally agreed that I could have him tested if it was that important to me. (And I've since found out that there's no need for your pediatrician to a) say you need the testing or b) be the one to initiate the process.)

With my friend's support that this is something I can do and the reassurance that the earlier I get started the more results we will see, I took the plunge and started the process of having Mister Man tested for the Early Intervention program. To qualify for any therapy, a child must have a 30% of more developmental delay. Although my concern was with his speech (it wasn't just that he didn't talk - he didn't babble), any testing required that they examine at least three areas, which I thought was silly. It ended up not being so silly, as part of his speech issue was relate to his lack of core strength - without being strong enough to sit up straight and support himself when taking breaths deep enough to push through the air required to speak, he simply couldn't speak. Oh. Thus, physical therapy was added to the speech therapy he began at 17 months old (though we started the process when he was not quite 14 months).

When we heard the news that yes, he had not just the areas of delay that we'd expected but additional concerns, my friend was there again to offer support and help me work through how I felt about it. She was the one who helped me navigate both what to do next and my emotions about it. I wouldn't have been nearly so stable, wouldn't have had nearly the sang froid that I did. She was the one who encouraged me with the stories about the changes her daughter was making and what I would expect, too. As I drifted further from the playgroup as he grew older and was more and more obviously different and not fitting in with the other girls in the group, she was there for me, making that break much easier than it would have been otherwise.

But yet how easy would it have been for me to brush her off when she talked about her daughter - not even knowing that first time that I was so concerned about Mister Man? How simply could I have not asked those questions that she so honestly and thoroughly answered for me? It never ceases to amaze me how the right people appear when we need them. The trick is to let them in, as hard as that sometimes is, especially for people like me who are so very used to doing things on our own without any help from anyone.

Who has been your own personal angel walking into your life?

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In the interest of full disclosure, I received a copy of the book "Expecting Adam" by Martha Beck as a part of the From Left To Write book club where we don't write book reviews but instead write posts inspired by the books we read. I received no compensation, and all opinions expressed are my own - as for the book, I'm mixed on it. Parts of it I loved and parts of it drove me nuts.

Mister Man Spoke, Too

As a reminder, I still have a giveaway going for e.l.f. cosmetics here and several more to come when I have more than ten minutes to put up a post!

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I wrote last week about Little Miss's first word because I thought it was pretty funny. Really, how often does a one year old know the world "eyebrow" (notice I said know and not pronounce correctly), let alone have that for her first word.

That being said, I can't just leave Mister Man out. After all, he's quite the verbal little guy. He didn't start out that way, however. Like Little Miss, he didn't babble as an infant.

In fact, when he didn't talk at fifteen months, I expressed concern to my pediatrician. She told me that she wouldn't be worried until he hit eighteen months without talking, but that if I were really worried she would help me through the Early Intervention process (which I had asked her about, having a friend who knew enough about it to give me the basics).

Any parent with a child under the age of three who is concerned that the child might developmental delays from social to speech to fine or gross motor and more can have the child evaluated for free to determine if there is actually a delay and, if so, how severe. Each state does it differently, but let me encourage you to google Early Intervention for your state if you have any questions. It's much better to know and be prepared than it is to try to deal with something at a later age. If therapies are needed, they're far more effective the younger the child is.

PSA over, and back to my point.

We started down the path of requesting an Early Intervention evaluation for Mister Man. We received the paperwork via mail and returned it as quickly as possible. From that point, the county (it's done at the county level, at least in Illinois and I believe most if not all other states, as well) had sixty days to set up an evaluation to determine if he had more than a 30% delay in any area, which would then qualify him for therapy.

While we were waiting, a seventeen month old Mister Man was playing in our guest room around 11am one Sunday morning. He bent over to pick something up and leaned slightly into the guest room. He puked. I sent my husband over to clean it up, since I don't do puke. We thought it was weird, since he was playing just fine but shrugged it off.

Within an hour, he had vomited another seven times and the diarrhea was starting to kick in. We called our doctor who told us to keep him hydrated and just watch him. At that point, he'd fallen asleep atop our guest bed and seemed relatively comfortable.

As soon as he woke up, he began vomiting over and over and was completely listless, and we called the doctor again. This time, she told us to go ahead and take him to an emergency room with a pediatric specialty. We packed Mister Man up in the car and drove the forty-five minutes to that hospital, with me on the phone along the way trying to determine from my insurance company whether this hospital was covered and what we had to do. It was, fortunately, our first ER trip.

As we walked into the ER, I carried Mister Man while my husband parked the car. Mister Man began vomiting again as I walked through the doors. A nurse kindly gave me a puke catch bucket for him as I began to cry and started to register him. It was now 4pm.

At 7:30, we still hadn't been seen by anyone, but his vomiting had stopped since the major episode when we first came in. Part of that was likely due to the fact that he'd puked up everything in him, and he had no interest in any popsicles or cups or anything. We sat in our little corner as far away from anyone else who might be contagious as possible, and I rocked my limp ragdoll of a baby.

We were finally taken back, and the doctor immediately started fluids by IV. Mister Man perked up a little. He now had a fever, and the diarrhea had returned. His poor bottom! The doctor told us that he likely had rotovirus. The big question was whether Mister Man would be sent home because he appeared to be doing better or whether we would simply be back in the morning and he should be admitted. Around 11:30pm, they finally decided to admit Mister Man.

We were ushered up to the pediatric wing, and Mister Man wore a tiny little hospital gown with cute clowns decorating it. He was hooked up to all sorts of machines, and the IV was continued. Luckily, he was asleep for most of this.

By morning, he was far worse. It was definitely rotovirus, and he simply lay there like a doll with his eyes open and staring at the ceiling. He had no energy to even blink, let alone move. Nurses checked him every hour, taking his temperature, fixing his pulse-ox meter that kept falling off his tiny little finger, giving him shots, adjusting his IVs, listening to him breathe, and more.

The whole time, he lay there unmoving and silent. It was heartbreaking. I was lucky enough to be able to stay in the hospital with him, and my parents also took shifts sitting with me when my husband had to go teach. In fact, the second or third night we were there, my father saved Mister Man's life.

I was asleep in the hospital chair and Mister Man had rolled over such that his IV line was wrapped around his neck and was strangling him. My silent boy struggled, and my father was luckily awake and was able to untangle him before it was too late. I still shudder to think what would have happened had my dad not been there that night.

By the third day we were there, Mister Man was starting to feel slightly better. I was able to take a short break to run home to shower and grab some Baby Einstein DVDs to entertain the boy who no longer wanted to lay in his hospital crib. He was finally standing up or sitting on our laps and needed entertaining. With so many wires still attached to him, he couldn't go far!

The nurses were still monitoring him regularly, and he was not a fan of the temperature taking (keep in mind, he was seventeen months), nor did he like the shots they gave him. The probiotics they were not giving him to counteract the massive doses of IV antibiotics he'd received were also not high on his list.

As the kind nurse stepped toward him one morning, he was standing up leaning between my legs as I rubbed his back. He heard her coming and craned his neck to see who was coming. As she approached, his eyes widened. He shook his head back and forth rapidly. Nonononononono! he shouted.

His will was denied, and the nurse did what she had to do as he fought her to the best of his ability. And me? I sat there in shock, reeling from the fact that my little boy who had been near death just a day before had finally spoken his first word.

As a post script, Mister Man was evaluated for Early Intervention less than a month later. He had over a thirty percent delay in a few areas and began speech and occupational therapy twice a week shortly thereafter. His big issue with speech was luckily not comprehension but simply that he didn't have the core strength to draw enough breath to make sound. We added physical therapy later that summer, and the improvement he made was impressive. He picked up on the major signed within a few weeks of starting. By twenty-two months - less than four months after beginning his therapies - he was putting together two and three word sentences. And now? His speech rocks. I thank my lucky stars for my friend who knew enough about the services that are available to recommend the Early Intervention testing. And I encourage you to check it out if you are at all concerned. It is often nothing, but what a relief just to know for sure!

Angst

Mister Man started preschool on Tuesday. He's doing well, and except for the mishap where he almost got onto a bus that would have taken him to the elementary school instead of his school, it's all gone well. I still can't believe he's only got five kids in his class this year -- I know it will grow as the year goes on and more kids qualify for and enter the preschool, but still five kids is tiny!

Little Miss was also supposed to start preschool on Tuesday. In fact, we've been using the "They won't let you go to St Marks if you aren't potty trained" refrain for several months now. But she didn't go. Why not you might ask?

Well, Mister Man's preschool is our local early learning center for special needs and at risk kids ages 3-5. Mister Man qualified when he turned three and graduated from Early Intervention but still needed services. His social development was far behind (fortunately much due to his speech delay that is now resolved), and his fine and gross motor were also delayed.

Little Miss has also spent time in Early Intervention. When she was six months old, she wasn't babbling at all. And by not babbling at all, I mean she didn't make a sound, including when she "laughed" - all she'd do was open her mouth wide with a smile and shake. She entered speech therapy shortly thereafter.

A little over a year into her speech therapy, they wanted her evaluated for occupational therapy, as well. She fell constantly and didn't use her hands to catch herself. Plus, she showed no reaction to pain. She had a really hard time moving from one surface to another, like from the sidewalk to grass. She qualified for occupational therapy well before her second birthday. But there were no therapists in Early Intervention available, so we were put on a waitlist.

Last August 31, Little Miss graduated from her speech therapy and now has quite the vocabulary. We were lucky. Her delay was due to constant ear infections (see the comment on pain -- we had no idea) that essentially had deadened her hearing. She's had tubes in for almost two years now, and the hearing is fine -- a huge relief. The speech therapy allowed her to catch up, and she shouldn't need any going forward.

When she graduated from Early Intervention, we still were on the waitlist for a therapist and we gave up in October. It seemed silly to keep paying for a service we weren't receiving. But she still falls all the time and ends up with huge welts and bruises and scrapes whose source are unknown. We constantly get incident reports from daycare and preschool from injuries she's incurred - at least once every other week, if not more often.

So we wanted to have her screened at the early learning center. The screening isn't scheduled until the Friday before school starts. So I found out last Friday that they want her at the school. I knew previously that she would have qualified as you now only need one qualifying criteria to attend (a change in Illinois this year, as it had been at least two until now). Qualifying criteria include everything from a second language spoken in the home to having been in Early Intervention at some point to having a sibling attend the school to income levels and more.

However, the recommendation is to have your child in the least restrictive environment possible, and I was hoping that this would mean the private preschool we'd signed Little Miss up for. They were concerned about her balance and stability, however, and strongly recommended that she attend his school. They picked up on something I hadn't noticed which is that when she stands to play with something, she sticks her feet out like a ballerina which is indicative of a balance problem.

I got the recommendation at 1:26 last Friday and immediately called the private preschool to let them know the verdict. They were closed last Thursday and Friday, so I left a message explaining and asking the director to call me. I just realized that I've yet to hear back from her. Now I'm irritated by that. Hmm.

Because the screening didn't happen until last Friday, the newly eligible students aren't to start until this coming Monday. I made sure to get all our paperwork in by this afternoon, including the bus forms on Wednesday.

By this afternoon, I still hadn't heard about when the bus was going to come to pick her up or who her teacher would be. When I called the school, the admin told me that the principal had yet to make up the class lists and may not get to it today. And that students may not start until Tuesday or Wednesday.

Oh no no no no no.

Monday is my in the office day. I leave the house at 6:15. My mom comes over, and the plan was for her to put Little Miss on the bus at 8:30 or so and to get Mister Man to his "kindergarten" program by 9am. Since it was her first time, I was going to stay to get Little Miss on the bus and take the requisite pictures but then head to work. And my mom had bridge at 10am. And our daycare doesn't exactly smile upon random added hours, nor should they.

I called again a little before five to get an update and spoke to the principal who explained that she'd spent much of the week putting out fires but totally understood my issue and was going to go work on the class lists right then and would call me back later. But no bus. Maybe no bus until Thursday.

I called my mom and she graciously agreed to take Little Miss to preschool on Monday -- which means that I miss out on seeing her off on her first day! -- and ensuring that my dad would take Mister Man to his program. That whole thing about trying to be in two places twenty minutes away at 9am just wasn't going to happen, and I can't go into the office that late. Or shouldn't anyway.

The good news is that she does have a class now. She has a teacher, and it's a teacher that I'm totally cool with. And there are currently only ten children in her class with a teacher and two aides. I know that will grow as the year goes on, but I don't think it will ever get above 17.

The bad news is that I'm missing her first day now! I'm debating faking the photos and pretending like her first day on the bus is her first day. Or making my mom take the photos and praying that she learns how to use the zoom feature.

The other option that I've seriously been considering for awhile is quitting my job. What I do is generally interesting, but I have a schizophrenic boss now. He's a huge micromanager which just doesn't work for me in general. And he piles on random assignments that he then forgets about two days later. He is never on time for meetings and frequently blows off meetings with me with no warning. But yet I'm an incredibly valued employee who they treasure.

I hate missing the moments of their lives. And I have so much going on outside work that I'd love to focus on more. I've yet to put together an agenda for the PTO meeting on Tuesday. I need to confirm that the newsletter goes out on Monday or find someone who can go to school and copy and distribute the announcements that the PTO meeting is occurring on Tuesday. I'd really like to get back to running. I'd like to do more on a day to day basis for and with the wee ones.

I knew I was getting burned out in mid to late June. My new boss started in early May. I had my week plus off at the end of August and thought that would be enough to recharge my batteries. I purposely didn't dial into any meetings while away and only checked email a few times. I came back and even that first morning soooooo didn't want to go to work. This is the first time that a vacation hasn't done it for me.

But I work three days a week, two of them from home. And I make more doing that than my husband does working full time. How can I justify giving that up? The situation I have isn't something that you can easily replicate elsewhere. And being completely meanspirited, I work in finance and that sector isn't doing so well. It's possible that my division would be shut down at some point in the next couple of years. The severance would be really nice.

For now, though, my alarm will be set for 5:40 on Monday. I'll leave my mom detailed instructions of what pictures to take of Little Miss. I'll call to make sure the handoff went well. And while I'm at work, I'll have plenty of moments wishing I weren't there, regretting that I'm not with my wee ones, and wondering if I'm doing the right thing.