Children's Hospital Evaluation 2013 - Autism

I took Will back down for his yearly checkup at the Child Developmental Unit at Children's Hospital in Aurora. The appointment went well. He did a really good job and did everything he could. He wasn't tired or unhappy. He saw the occupational therapist, speech therapist, physical therapist, child psychologist, and developmental pediatrician.

The biggest thing was that Will was given a diagnosis of autism. Last year they told me: 'No we don't think he has autism. He is too social.' In the last year he has changed in that he is able to focus for very long periods of time on repetitive tasks, like throwing balls or rocks. Over the summer he loved throwing rocks so much that some days he would be outside 3 hours throwing rocks and never get bored with it. He also has his obsessions with opening and closing doors and drawers. When we go visiting family or friends he isn't interested in the people so much as interested in their houses and the things he can explore there and the doors he can open and close. Will makes good eye contact with me and Mickey, but we are really the only ones.

The way autism was diagnosed for Will is the professionals take his overall developmental age, which was 9 months. Some categories were higher than 9 months, but that was the average. They look at what a typical 9-month-old is doing socially and Will is not doing what a typical 9-month-old does. He doesn't interact like you would expect a baby to do. So since he falls below that, they put him on the spectrum. I'm happy to have a diagnosis of something. I don't know if that is Will's only issue. I think he has a lot more going on. I think his brain is having some very mixed signals and things just aren't connecting properly.

I will be honest: When I picture a child with autism, I picture hand flapping and rocking along with some genius activities; smart at math or amazing at playing the piano. I really do not mean to be offensive about this. I am just saying that's what I have always pictured in my mind. Now I know differently. They call it autism spectrum disorder because of the large spectrum of symptoms, skills, behaviors, and impairment. And Will doesn't really do any of these things I picture. He doesn't really flap his arms around or rock. He is aware of us and his surroundings. He likes to cuddle and be close and shows some affection. He is very silly sometimes and loves to laugh and be tickled. My eyes are more open now the more I read and learn about autism.

The team of professionals used a thing called "The Bayley Scales of Infant Development" to evaluate Will's overall development. In cognitive he is "extremely low" at 4 months. In fine motor he is 9 months. In gross motor he is 19 months. In receptive language he is 5 months. In expressive language he is 9 months. Will is 3-1/2 years old. In a year he has made 4 months' worth of progress. Some progress is better than no progress, yes. But I find this to be sad. I'm sorry, but I do. I'm worried about Will's future. I am worried about it more than anything else. I do not know what he will accomplish. Will he ever be able to be toilet-trained? Will he ever be able to read? Will he ever have a friend? What will he do without me when I'm gone? We can only keep pushing forward and pushing him harder to learn.

A Good Day at Speech Therapy

When it comes to raising a child like Will, patience is a virtue. For sure. Everything moves rather slow. But the gains, no matter how small, are HUGE! I mean when something new happens we usually make a crazy big deal out of it and celebrate. I love when he does something new!

In the last week Will has been saying his "M's" pretty well. Yesterday when he was in distress I heard him blurt out "mmmm-mama, mmmm-mama." I wasn't really sure if he meant to say mama, but today he did it again when I tried to leave the room so he could be one-on-one with his speech therapist. This in itself is very cool. I like for him to be able to call me something other than screaming. For many kids their first word is mama!

There have been three other times when I can think of Will saying a word. One was when he was about 20 months I swear I heard him say "bird" when a black bird was cawing. Then a few months later I heard him say "ga-pa" once (for grandpa). Around that same time he also was getting pretty good at saying "kitty" for a couple weeks. One of the problems with verbal apraxia is that words can be spontaneously said, but if they aren't practiced over and over again they can be lost. Back then Will didn't have much interest in saying much and was always so busy doing his own thing in his own little guy world.

I found this chart below to be very interesting... Mostly due to the fact that the first sounds a child make are usually vowels, which I think he has mastered for the most part, and N, M, P, H, W, and B. I have heard him say N, M, H, and B. So hopefully soon we will hear the other sounds and he can start making some words. We'll see!

What was even more exciting today, though, was that Will said plain and clear "more" to his speech therapist. Since he was in distress and wouldn't do anything for her without me, I went back in the room with them and helped cheer him up. She was doing a spinning top toy with Will and she asked him if he wanted more, and he did his sign language for "more" and then said it! We both looked at each other and cheered for him. He only really did it once, but the rest of the time he was signing "more" he was doing the "M" sound. Maybe next time I will try to take a video of him. It was so cool! And I loved it that she witnessed it with me to help me believe that was really what was going on. Sometimes I think, did that really just happen? It was so great!

Also, I took this video a little while back (before Will had a haircut haha), but it shows Will signing "more" in his own way. This was his first few days of doing it. He's actually getting even better at it! And also he had just woken up when I took this video and was still a bit tired. But anyway, it's cool. Check it out!

More more more more more more more more more more. Let's go more! 

Discipline and Negative Behavior

Straight off the happy train back into Downersville! Well no, I don't think this is going to be as much as a downer as it is just talking about a tough phase we are in right now.

Will is 3. Three year olds are widely known to be adorable little devils at the best of times. My nonverbal 3-year-old can be the devil and all his little minions rolled up in to one ball of temper and teeth and nails. Will gets really, really frustrated. When he was smaller he would just roll along with everything and went with it. Things are different nowadays. A friend of mine who has an incredible child with autism, who is I believe about 9 years old now, said when her son was Will's age he was a "hot mess." I would definitely use this term to describe Will. He's a total hot mess!

Can you imagine not being able to communicate effectively? What if your most-effective methods of communication were to bite, pinch, and scratch? It gets my attention pretty darn quick and I can imagine it's a way for Will to release his negative feelings and gain some control. He has learned that doing these negative things to me will get my attention fast and he has learned to do them all the time. Sometimes he laughs at my reaction to him scratching me. Like he thinks it's funny when I say "Ouch. That hurts mommy." Great.

A recent pinch from Will on my arm

This biting and scratching and pinching crap hurts. It hurts like a mother. Will's got the sharpest little teeth and comes at me from all angles. He is known to drop down and bite my leg or sneak up from behind and bite my booty. In the last month he has learned to pinch and scratch. And he is strong! He drops down now like a noodle and makes it really hard for me to pick him up. He knows how to fight back. He has that all figured out. I worry he is starting to manipulate me in some way, but it's so hard to know what to do. It is really tempting to spank him. Several people have told me to bite him back or scratch him back, but I don't see how this would help. He doesn't really understand what he's doing and doesn't know what it means to hurt me. He wouldn't understand why I am spanking him. And the times I have scratched him back or snapped him on the cheek to make him stop, he just gets more mad. It becomes a cycle of madness.

These days Will is starting to understand words and simple phrases more, which is great; but he still really lacks in understanding why we do things or why he can't do certain things. He just gets really upset when he doesn't get to do the things he wants. For instance, he wants to go out in the front yard a lot. We live on a quiet street, but he certainly can't be out there unsupervised. And I don't always want to go out front. He doesn't understand if I say to him "we will go out there after I finish what I'm doing"... or whatever. He gets so mad when he doesn't get his way and out come the teeth and nails and screams again. This kind of thing happens all day long. Sometimes someone forgets to lock the front door. Will seems to realize this immediately and will be out the door before I can stop him. I then have to try to either coax him into the house (which works maybe 1% of the time), drag him into the house while avoiding teeth and nails and fighting his weight and strength, or I simply give up what I was doing and go outside and play with him for a while. You know what annoys me about this? We have a pretty fun backyard with tons of stuff to do back there. The front yard has our cars in the driveway and grass and a tree and some flowers. I don't know what it is about the front, but he just loves it. He always wants to be out there, no matter if it's raining, snowing, windy, etc.

So how does one discipline a child like this? I admit I have lost it a few times and yelled back at him. He looks at me with a blank stare, doesn't care or even understand that I am mad or he's in trouble. Will shows no emotion when I yell at him. Sometimes he laughs and thinks I'm being funny. It is extremely frustrating. It's infuriating. I have to check myself too and take my own break. A mommy timeout. Regroup. Try again. Then try to cheer him up, even though I am still pretty upset with him. He doesn't get social cues, although he is starting to not like stern voices or being scolded. I think this is a good step.

But I have got to find out how to stop this awful behavior. Therapists have given me some ideas. One therapist said to have him hit a wall or stomp his feet instead. This worked maybe once. When his little mouth is ready to bite, there is very little that can stop him until he bites. He wears a chewy tube all the time that I can shove in his mouth instead, but this is probably 10% effective. He is frustrated and wants to hurt me. I don't hold it against him. Some days I handle it better than others. If we're at home I usually put him in his room alone to cool down. But there are days when he's gone in there 15 to 20 times for a time out. It gets to be a little much and I don't think he needs to spend that much time alone in his room. It's hard to know what to do.

I really hope preschool helps with this. I have heard great things about the preschool class he's going into in September and I think it will be great. He is going to be there 4 days a week for 3 hours at a time and some of this behavior is bound to come out. There is also behavior therapy out there and child psychologists and I would love to get him into something to help control his emotions. I'm working on getting something going for him. 

Will's Strengths

Hello! Today I'm going to write a positive post... with likely tons of exclamation points!!!!!!!!! My dad said my blog was a little depressing and another friend said she made sure to grab the tissues before settling down to read it. I am sorry for being so negative. It feels good to talk about all that stuff, though, as it is in my mind and sometimes I look at our situation as a real tragedy. This is no tragedy, though. This is a good life and we have it better than many people of the world. I really don't know true suffering compared to some. This is a truth in my life that I always hold on to. I know we have it good. If you know me in person, you know that I always try to keep things upbeat. I don't like to rock the boat much and enjoy laughing and making people feel good. Sometimes the negative feelings get buried inside and I think it has been really helpful to write those feelings out and now I can go back to them whenever I feel the need.

So let me tell you about some of the incredible things about Will!

Laughter and smiling: My very most favorite thing about Will is his ability to find humor in the smallest things. I can say a phrase in a certain way, like "THIS little piggy..." and he cracks up. Will has no filter on his feelings and emotions like the majority of us do and when he is happy, you know it's an undeniable, genuine happiness. Along with his laughter comes his amazing smile. He has a bright-eyed, super sunshiny smile. I love it.

Will laughing with Grandma

Ball Skills: Will has a really good attention span when it comes to doing things he enjoys. This kid probably spends 60% of his awake time playing with bouncy balls of all shapes and sizes. He will play with a ball alone or with other people. He is extremely motivated by balls! You should see him catch a ball. It is amazing. I will try to get a good video of him doing it. He also likes to sit down with a small bouncy ball and listen to it hit the ground with the different ways he drops it. He turns his ear towards the ball and concentrates on the sound. I know I kind of put down the doctor in a previous post who told me to get Will into the Special Olympics, but if he continues on with his amazing ball work, I am really thinking about getting him involved with them. He could be an Olympian! I can see it now.

USA! USA!

Easily Entertained: Another great thing about Will is that he is rather easily entertained. If we are in a safe kind of environment and one that he feels comfortable in, like a house, the park, or someone's backyard, he is usually a really good boy. I really feel blessed that Will can entertain himself so well. It lets me relax and enjoy the company of friends and family more. It is a different story at home, however. We spend so much time here and I think he gets bored or worried I'm going away if I am moving about the house trying to get things done. But if you were ever to invite us over to your house, Will would probably be an angel and enjoy climbing your stairs, opening your doors, bouncing your balls, and playing in your yard. He also doesn't mess with people's breakable things. It is really nice.

"The way this sand falls is fascinating."

"This water feels good."

"This metal is fun to stomp on and makes a great noise."

"These bubbles are supreme!"

Intelligence: Remember how I told you the doctors down at Children's thought Will has an intellectual disability? Well, I want to dispute that claim right here. I think Will is much more intelligent than he is able to show. He doesn't understand or have particular interest in many things, but he is smart. For example, one day I opened the refrigerator and found a bar of soap where the sticks of butter are. I thought it was Colin playing a joke on me, but he denied it. Then I realized it was Will. He was playing in the bathroom and took a wrapped bar of soap out of the cabinet. He then took it to the kitchen and matched it up with the butter. Isn't that something? To me it was incredible that he made that association. A bar of soap is kind of similar to a cold stick of butter. I told some of his therapists this, but they didn't find this as profound as I did I guess. This to me is a sign of intelligence.

Another example is Will will sometimes take a frying pan out of the cupboard and set it up on the stove top right where we normally cook. He will take a spoon out from the drawer and add it to the pan. He is really observing things more than is apparent at first.

Will is really starting to understand language a lot more than ever. He is definitely delayed in this category, but in the last 6 months he is starting to understand things more. I can ask him "would you like pancakes?" and he gets so excited and leads me to the kitchen to make his favorite food. I tell him, let's put on your shoes and he stops and lifts his feet and lets me put his shoes on. We can tell Will that we are getting ready to go somewhere and that he needs to get into the car, and he runs right for the door and heads outside.

Will doesn't watch TV or play video games. I mean, he is only 3; but still, TV has never interested him (other than one particular music DVD I played at least a couple hundred times for him... it was nice while it lasted)! I said to Mick the other day how I feel Will is probably going to be more well-rounded and experienced than Colin due to the fact that he has very little interest in electronics. He is learning so much through his environment. It would be really nice for a break if I could sit him down to watch a little TV, especially some of the Signing Times videos, but so far that's not happening. I'm okay with that.

Animal Love: Will loves our pets. He particularly likes our dog Lucy. When he is feeling like cuddling, he will cuddle right up with her and suck his thumb. She doesn't mind. I want to get Will a service dog someday if I can figure out how to go about that. I love animals too and am happy he likes ours so much.

Will also loves our new kitty, Ricola

People Love: Will loves his peeps. He particularly adores his dad and his grandpas. He is also starting to like his grandmas and my sister more too. The more time we spend with certain people, the more Will is comfortable with them. He has a tendency to like men more than woman, although I am the number one person in his life. Maybe I am enough as I am the ultimate woman! Ha ha. Just kidding. I'm just his mommy and I'm glad he loves me and trusts in me so much.

Mick reading to Will

Grandpa dancing with Will and Mason (my nephew)

Enjoyment of Praise: A particularly-nice thing that makes therapy a lot easier is that Will enjoys being praised for what he is doing. He loves when we (therapists included) clap for him after he accomplishes something. I hope this lasts for a long time as it is an easy thing to do and he is really motivated by it. He also likes to look for recognition after doing something. My friend was over the other day with her kids and Will went flying down the slide like a pro and he looked at her and waited for her to acknowledge what he had just done. He does this kind of thing all the time. It is really an endearing quality and I am told a good sign in his development.

There are many other examples I could get into, but I think I will save them for another post sometime. These are the main ones for now.

I am learning to work with Will more effectively and take him to do the things he enjoys rather than do things that upset him. I always end up pushing him a little farther than he is comfortable with, but I hope it makes a difference someday and doesn't have a negative effect. It isn't bad to push him, though. And I'll tell you, doing the things he loves does some days become tedious. Sometimes I just want to do something different and exciting! I mean, I don't particularly enjoy standing out in the hot sun watching Will go up and down the slide 40 times, but I stay there because he is happy and is working on his skills. 

The Challenging World of Sensory Processing Disorder

My cute little baby Will around the age of 12 months was starting to show some significant signs of sensory processing disorder (SPD), although I didn't know what this was at the time. One of the first things I noticed was when we did parent-baby swimming lessons he would crunch up into a little ball and cling to me for dear life when we got him in the water. He didn't enjoy one minute of swimming lessons. It was sad because I think learning to swim is important and I wanted him to enjoy it as much as Colin did. These days Will is starting to be okay with getting in the water and playing a little. He LOVES the hot tub so much that he pulls me there when he sees it.

Sensory processing disorder is defined as a neurological disorder where a person's brain cannot organize and integrate certain sensations from the body's five sensory systems in a normal way. SPD is not an officially-recognized medical diagnosis; but let me tell you, it is very real and it is horrible. It rules every single minute of Will's life... and mine when he's there. It is like a ball and chain that never gets taken off. I have noticed in the last 6 months or so that Will is starting to cope with some things better and perhaps his brain is learning to work around some of his issues, but it's still bad. Some days are worse than others and new things are now bothering him that never were a problem before. 

Children with developmental delays often have some kind of sensory needs. Many average people also have minor sensory issues. For instance, ever since I was in elementary school I cannot stand the feeling of my hands after getting them wet or washing them. I learned to deal with this in school by putting Elmer's glue on my hands! And when I got older I learned it is acceptable to carry lotion with me everywhere.

When Will saw his first occupational therapist (OT), she told me about SPD. Will's young brain is not able to handle all the sensory input. Our early examples of issues for him included being deathly afraid of loud noises like pots and pans, hammering, dogs barking, and babies crying. He didn't react like other babies do. It was (and still is) more like clawing and biting and screaming and it takes a considerable amount of time and work to come down from the terror. Another problem for him that is still a problem to this day and I think is getting worse is that he has a fear of certain enclosed places like elevators, bridges, tunnels, and even the outdoor areas at stores like Home Depot or Wal-Mart. It doesn't matter if he's walking, in a cart, in the car, or in his stroller. There is something about these kinds of spaces that terrify him. I took Will to a local splash park the other day, a place we had been to many times before and never bothered him, and part of the toddler playground and sandbox has a cover over it. He refused to go into this area, which would have been lovely in the shade on a hot day. He scratched me and bit me and screamed if I took him anywhere near it.

What makes this so hard is these are activities I enjoy taking both my kids to and Colin suffers as well. This makes me really sad. It's sad to see the terror in my child's eyes and listen to him scream over an activity so many children enjoy. This happens all the time, though, and Colin and I are growing more accustomed to it.

The first OT started working with Will's tactile defensiveness in his hands. I think this has pretty much resolved and wasn't really a big issue for him in the first place. His senses that are off are sight, hearing, and touch. The touch issues involve more of him being defensive with anything to do with his feet and his head, but not his mouth. He dislikes having his hair washed. I just do it as fast as I can and try to distract him with something. He absolutely cannot stand having his hair cut. I get anxious just thinking about it now! It takes Mick and I both holding him down to shear it as quick as we can. I tried growing his hair out for a while, but then it gets on his ears and he's always messing with it. And of course it gets dirty with food and such and I have to wash it even more... Plus he's so cute with a fresh haircut!

I think OT's have an interesting job. They use different methods to help develop daily living skills. They also are the ones who help Will with his SPD. There are a lot of different treatment ideas. It's hard for me to know where to begin. We hope someday we will find something that really works for Will. We started out doing brushing, which means every 2 hours or so you take a little brush and brush his skin with deep pressure and then do joint compressions. It is a big time commitment, but I think it helped. He hasn't really needed brushing as much in the last year, although I'm thinking about starting it back up again. I will do anything to help him be happy. Everyone wins when Will is happy!

There are tons and tons of other sensory activities. Some that Will likes are carrying around heavy objects (like plastic gallon jugs filled with water), jumping on the trampoline, swinging, listening to calming classical music, beating on the piano keyboard, chewing on a toothbrush, pushing a grocery cart around, spinning around to music, getting an essential oil massage from me, and looking at and feeling his textured baby books.

Another big problem involving Will's SPD is his ability to fall sleep and stay asleep. He is a light sleeper and every little noise wakes him up. It is really frustrating. I keep a fan or white noise on in his room and also have a fan running outside his room next to his door. During his nap, if I'm lucky enough to get him to nap, I go about the house "shushing" everybody and sending them outside to play so they don't wake Will. He also always wakes up with the sun and won't fall asleep in the summer until the sun is down, even if he's really tired. The last time Will slept anywhere overnight but at home was when he was 2 months old at my brother's wedding in South Carolina. He is almost 3-1/2 and we haven't gone on any trips with him. That's a whole other thing I could get into: Vacations. Maybe I'll write about that later. But for now, there's no way I would take him overnight anywhere. When he was a baby I would bring Will into bed next to me in the early mornings, cuddled right up next to my chest and we would sleep together. I thought then that he would be my little sleeping buddy for a long time. Nope! Even when he was sick with the fevers I couldn't get him to cuddle and sleep with me anymore.

This is getting long-winded and I thank you for sticking with me if you are still reading. There is so much to talk about regarding Will's SPD!

Will can scream at the top of his lungs the loudest, most ear-splitting shrieks you have ever heard. He can't regulate the loudness of his voice. I believe I will probably have some sort of hearing loss someday due to his screaming in my ears if I'm not far enough away. It gets so loud that I will have a ringing in my ears afterwards. And this happens many times throughout the day for various reasons. I bought a pair of noise-cancelling headphones for Will to help him deal with loud noises, but I ended up giving them to Colin so that he could protect his ears when things are getting bad with Will. Will wouldn't let me put them on his ears anyway. Colin some days says to me, "I can't handle all this screaming!" I sometimes even may end up putting earplugs in my ears if the screaming isn't stopping. They are usually in my pocket. It is no bueno.

It used to really bother me when Colin or Will would cry. I would do what I could to stop the crying and make the kid happy again. But now I've grown so accustomed to the screaming that it's just part of the background noise. I usually try my tricks to comfort Will, but sometimes they just don't work and I really don't know what's bothering him. I wish so badly I could get into his head and feel what life feels like to him. I have a feeling it looks something like this, but spiraling and spinning and making loud mechanical noises:

I wouldn't wish SPD on my worst enemy. It is a terrible thing to live with. Will tends to get in moods for days where he just can't break free from the monsters that he lives with. It is so hard for him and I feel for him so much. I wish he didn't have to experience any of this. I really just want him to be happy.

I know it's always better to be positive and not dwell on the negative things. There are some days, however, that I worry for all of our futures. I worry about what Will will be like when he's bigger and I won't be able to stop him from biting, scratching, and pinching me. What will we do when he is a big teenager? There are times when I am so jumpy that I flinch when someone comes close to me. I'm worried it's Will coming up to bite me from behind. I fear that this could be the thing that breaks me.

I can say that most of Will's anger is taken out on me and Mick. He bit one little girl once on the hand who was getting too close into his personal space and that was the only time. He has gone after Colin a few times, but it was never anything too bad and Colin knows to keep his distance when Will is in a particularly bad mood. I am hopeful more therapy and school will help... I think they will.

I don't write this for anyone to feel sorry for me. This is my child and this is my life. I will do whatever I can to make it better for him. I really hope to make people understand that these things are out there and happening to countless families. I would like to inspire compassion and empathy.

The Big Evaluation

Nearly a year ago now Will had an evaluation done at Children's Hospital in Aurora, Colorado by a developmental pediatrician and her team of therapists and a psychologist. They all looked at him and asked him to do things. The only thing Will wanted to do was open and close the various doors in the unit. It was so hard to get him to do anything. We had to tell them that he can do more than he is showing you now. And they had a zillion and one questions all about everything from our family history to pregnancy history to Will's history. It was an exhausting day. It feels really strange to have people poking and prodding your child as if he were a specimen to behold. I had to remember the goal was to find out what exactly is going on with him and if there is anything else we should be doing, and I guess this is how it's done.

So why did we want to have Will evaluated? Mainly I really wanted to know what is going on with him. He is in a gray area for many things. He could have this, or he does this sometimes, etc. I thought maybe he has some kind of brain damage or something. Or maybe there is a genetic condition. I had read tons of times about how early intervention is key and I wanted to make sure there wasn't something we were missing. I'm one of those people who really want to know I guess. I just want to know! It may not even change anything, but I just can't stand to leave a stone left unturned.

The results of this evaluation were official diagnoses of childhood apraxia of speech, global developmental delay, intellectual disability (formerly known as mental retardation). I couldn't stand that last one. It's as if they were telling me my son would never amount to much. They told us to get him into the Special Olympics. They gave me a handout with this poem called "Welcome to Holland." If you have time, read it here. It's a nice sentiment and all, but not really comforting at the time. I suppose it may be more meaningful down the road. I still don't really believe my son has an intellectual disability... or might not be very severe... or maybe he will grow out of it. He is very far behind his peers at this point, but I see intelligence in his face. I see a boy who can't make his body do the things he wants it to.

From this evaluation Will was referred to several different doctors and tests. We spent a good deal of time in Aurora over the fall and winter. He was ordered evaluations by Genetics, Ophthalmology, and Neurology. They ordered a full body bone scan, front and back; and a brain MRI to look for anything unusual. He also had urine and blood work done for a metabolic panel.

The Genetics evaluation was the one I was most looking forward to. They dissect your child and lives even deeper, but it's nice to see actual results in the end. I found it funny that they said he had slight dysmorphic facial features, mainly his big smile. I wanted to ask, "well have you seen his dad or his brother?" All three have that same large smile! -Same thing with his tall, lanky body. Genetics ordered a microarray of his DNA and we waited and waited for 5 months for the results. At this point I was searching for every possible genetic condition that he could possibly fit into. I made myself batty waiting. I thought it was taking so long because they were examining it even deeper. I didn't really understand much about genetic testing at the time and I honestly still don't. It turned out the results were "lost in the mail" for a couple of those months. Nice! I actually asked Will's usual pediatrician if he had gotten anything from them and he was the one who told me they found no concerning findings. The doc was looking on his little computer trying to tell me what everything means. It was kinda funny. I did end up getting the official report that went into greater detail. I'm glad to know he doesn't have a genetic disorder. However, that leaves even more unknown.

Will saw an ophthalmologist from Children's who had an amazing bedside manner. I loved that old dude! My mom came with us to that appointment and I think the doc enjoyed that. Will's eyes looked normal. I was worried about Will's eyes because his pupils tend to be really large while everyone else in the room's look the same. There was no explanation for this and, in fact, they were normal size and reacted perfectly during the exam, of course.

The worst part of this whole workup was the bone scan. I couldn't stay in the room for this. Will hates being confined or held down in any way. He screamed bloody murder for a good 20 minutes while the techs got it done. It was ridiculous. I was crying in the hallway by the time it was over. When the lead tech came out to tell us it was over, all four people in there were sweating and did not look happy. This leads me to wonder about post-traumatic stress. Why does Will scream like that when anyone unfamiliar comes close? Why will he not lay flat on his back? Why will he not let me cut his hair without throwing a raving tantrum? Why does it take three people to hold him down to cut his toenails? A lot of this has to do with his monster sensory processing disorder, I'm sure. I hope all these things aren't going to cause some bad problems for him as he gets older. I think he feels the loss of control greatly. He doesn't understand why we are doing this to him. We aren't trying to hurt him.

Finally, Will had the brain MRI under sedation. This showed two things of note: 1) An old brain bleed; and 2) A Chiari I malformation. The brain bleed looked old, something that happened during birth or right after birth and was punctate. I have no clue as to how this happened. It isn't in a region of the brain that controls speech or development and the neurologist was not concerned. It is yet another mystery. Now, the Chiari malformation I can write much more about.... so I'm going to do that in my next post. It's a complicated and sometimes controversial condition. A link to some general info is here to get you started if you're interested.

First Steps to Getting Help

Between the time I realized something was wrong and now, honestly not much has changed in 2 years in Will's neurological status. He has grown very big and is moving along at slow pace. We don't really have a true answer to what he "has." Sometimes people ask me, "what's wrong with him?" And then I try to come up with an answer without getting in a pissy-fit about what a rude thing that is to say... Not that I didn't just previously post "something's wrong with Will." But I'm his mom. I know he's deep down a sweet thing and I know he has gotten the short end of the proverbial stick. Everything he does is a challenge and it is heartbreaking to see him grope for words that don't come out; not be able to figure out how to sit down to use a slide; not know how to make his body climb a flight of stairs; not be able to tolerate loud laughter in a room. It's hard to listen to him scream at the top of his lungs about me not letting him open the grocery store's refrigeration units another 20 times. He doesn't know how to control his feelings and takes most of his anger and frustration out on us. He bites my husband and me and no matter what I do I can't get him to stop that painful behavior. He doesn't know how to play with other kids. He can barely play with a toy. I promise I will write a post on the things he can do because he can do a lot of things and tends to amaze me.

At 15 months Will's pediatrician sent us to a speech therapist. She was a nice lady who first told us the word "dyspraxia." She had been a speech therapist for many years and had a lot of experience. She could tell he couldn't motor plan. He had the intention of doing things, but his brain would not send the signals to his body to make them happen. She said he needed as much speech therapy as possible and to start now. She also told us to get evaluated by a physical therapist and an occupational therapist.

The physical therapist Will sees still to this day is my absolute favorite of all Will's therapists he has ever had. She is a wonderful person and really is great with Will. She takes it easy and he loves her. She works with him every week on getting his core strong and helps him practice walking up stairs, among many other things.

Will has been through a few different occupational therapists for various outside reasons. They work on things like pincer grip and getting Will to open his hands up instead of holding them in fists. They also have helped him deal with his sensory processing troubles. Again, I will write a separate post on this awful-horrible-bad monster condition. It is just so huge. It effects every single moment of his life, including sleep.

Around this same time I also got hooked up with Early Intervention, which is a free service for birth to 3 years provided by all states, some under a different name. They do a big formal evaluation of your child and then recommend different therapies that are provided in the home. Their big thing is that they teach the families in their own environment so that therapy can become a way of life. I have really mixed feelings about our experience with Early Intervention, though I would never truly knock an organization whose purpose is to help small children from all walks of life. We just had a few flaky therapists and I don't really know how much I learned from them; most of it was common sense. I will say that the OT who came was a really sweet woman who was great at listening and cheering me up when things felt most desperate. She also helped Will learn how to climb up and down some playground equipment and he really liked her company. When Will turned 3 Early Intervention was over and we have moved past it.

But for a good year we worked with Will and his therapy diligently. Back in those days I hoped he would just be a late bloomer and could possibly even have "Einstein Syndrome." There's another one I have heard dozens of times: Einstein didn't talk until he was 4. And I would send out my prayers and wishes to the great beyond: Please make my child a genius and I can look back on how silly I was when he was a toddler. Wouldn't that be great? Truthfully, I haven't given up hope on Will and I never will. Things move so slowly with him that it's hard not to get discouraged. But there is always hope. Eventually meeting milestones, even the littlest things, really do encourage me and I know it's all worthwhile. I try to visualize a time when he will be able to talk to me and understand and cope with what is going on in the world around him. And he is happy in those visualizations.

A year into Will's therapy not much progress had been made. The pediatrician referred us down to the developmental unit at Children's Hospital in Denver. What kind of wonderful, mind-blowing insights did we get down there? That's the next post!

A Boy With Developmental Delays - Part 3 - Realizations

For Will's 1st birthday we had a party at the park and it happened to be really windy out. He was one of those babies whose breath gets taken away by the wind. It was still happening. He was so uncomfortable with that wind on his birthday. It was also kind of too cold yet in April for an outside birthday party, so we moved it back to our house. Opening presents he had no interest in. He could have cared less about the wrapping paper excitement. The toys: Forget about it. The kid had yet to show interest in any kind of toy... other than baby books. He did eat the cake and that was cute.

My sister had a new baby in March of that year. How exciting that our kids were going to be able to play with each other and grow up together I thought! In December Mick and I decided it would work out financially for me to quit my job in order to stay home and save money we were spending on childcare. Money was tight, but I didn't really care. I would give things up. I was just so happy to be able to spend all this time with my kids. It was a dream! Mick's mother was a stay-at-home mom and I think that made a big difference in his acceptance of me not working.

My mom spent the majority of our childhood working and how badly I wanted to spend time with her back then. I loathed going to the babysitter. No one understood me there. My mom was burnt-out between work, housework, and three kids and I could feel that as a child. It still has a profound effect on me to this day. I understand that my family needed money and I have no bad feelings to my parents for this. We really wanted for naught and were able to experience some great things. I also do not judge working mothers in any way. We are all doing the best we can out here trying to survive and be happy. There are many days now that I wish I could go to work. I don't doubt that I'll be working again when the kids are in school. The world we live in is all about money, money, money. Always need money. Need to have a house, need to have a car, need food, need vacations from all the work.

Because of the fact that I was staying home now I offered to my sister to watch my baby nephew while she was at work. It would be perfect. Will was between 14 and 15 months at this time... And this is where my eyes were open to the fact that Will wasn't developing normally and something was really bothering him.

He still had no words. He still wasn't yet walking. He seemed to be getting more upset by things like the wind, loud noises, gas, constipation. My nephew was a little over a newborn and I had him over a few days a week. He was just a baby with regular baby things going on. For a few days it was nice, but then Will started to be really bothered by the baby's crying. I had Will screaming and hanging on my leg and a baby crying in my arms. It's an experience many mothers have had at some point, but it was really hard for me. I couldn't have these two babies crying and screaming at me nearly all day. It was really awful. Colin was also there and my niece who was around 6 then. Those two were easy as pie compared to this screaming and crying situation I was in. It was too much. I didn't know what Will was so upset about, but he absolutely could not stand the sound of the baby crying. Both of them ended up spending too much time alone in their cribs at different times and I was guilt-ridden. It was a hard time.

I had to break the news to my sister that I couldn't do this. This is the first time I admitted, in tears, "I think there's something wrong with Will." My sister was mad at me. I had made all these promises and had all these dreams of how it was going to be like the old days when people helped their families out and cousins grew up together. I guess she didn't really understand what it was like with the dueling screaming and crying I was dealing with all day; not to mention the bigger kids were on their own playing video games the majority of the day because I couldn't keep them in-line very easily. My sister got over it quickly, though, and no harm done. She made alternate arrangements for my nephew, but my niece got to stay and entertain Colin and that was good. But how sad I feel missing out on this time with my nephew. It really does hurt.

CRYING BABY ALERT: Crying babies had become a common issue. If we went to a restaurant, I would search for any babies and sit as far from them as possible. How tragic! I love babies! I loved taking the kids to the storytime at the library for babies. Will lost it a couple times and I thought, I'm never doing this again. This isn't worth it. Later down the road when Will started up with Early Intervention services, I had mentioned how hard storytime was and they recommended I make it a goal for Will to be able to tolerate storytime. Great! Sounds like torture.

Around the 4th of July Will finally started walking. He was 15 months. We were so happy for him. Maybe he would cheer up a little now. He was becoming more and more aggitated by the world around him. Later I was to learn about a monster called sensory processing disorder. I'll talk about that in a future post. But the walking thing was great! He was unsteady and walked around like a drunken sailor, but he just started, so no big deal.

It was during Will's 15-month checkup with the pediatrician where they have you fill out the developmental questionnaire and pretty much every category had "not met yet" for various developments. This is where our new life for Will begins. Stay tuned!

A Boy With Developmental Delays - Part 2 - Baby Days

 

One of the first things I remember when we brought Will home was crying to Mick about how things weren't going to be the same for Colin and I. I had given Colin so much undivided attention and he was so attached to me. He was the light of my life. Most people have siblings and I don't really know what I was so worried about. It was just going to be an adjustment; our family dynamic was going to change. I had no idea how different it would be! But the differences really didn't happen until Will was about 15 months when I started to feel things weren't quite right. 

I'll back up to Will's blissful baby days. First, he was absolutely adorable. He was chunky and soft and loved to cuddle. He nursed with the best of them and loved to fill his belly. He had a little colic for a few weeks; but, again, nothing totally out of the ordinary. 

I remember Will being a really good baby. How many times have I read of moms saying their speech-delayed kids were great, quiet babies. Will was so quiet. I don't remember him babbling like a baby does. More than anything I remember about Will when he was a baby is that he loved to bounce in his bouncer. He would bounce for hours a day. In retrospect, I believe this was probably really good for him as it helped him gain some gross motor skills. He just loved bouncing and bouncing and bouncing. I loved it too because I was able to get tons of things done. I would just bring that bouncer around the house with me and he would be happy in there. 

When I think of Will when he was a baby, I also see him strapped into his baby chair on the kitchen table staring at the ceiling fan moving on low. He always seemed so mesmerized by it. He would sometimes kick his little legs and get so excited about it. It was same thing over and over and over again, day in and day out.  

Will sat up at a normal age, about 7 months.Will crawled a little later than I guess what would be considered average. He was 10 months. He worked so hard on it for so long. I have heard of babies walking at 9 months and I thought, 'well, he's so big, it's probably harder for him to move that body around!' He was always so content just to be in one place. He would just sit there too; never played with toys; never had much to vocalize or complain about. I would encourage him to play, I would sing to him, I would constantly be talking to him. Things were just a little different than with Colin, who I had started to think was a super baby! Though realistically Colin just moved at the average pace. 

A couple little things when I look back that I can see as possible issues are: Will had a hard time holding a bottle for his babysitter or me once he quit nursing. He didn't really know how to do it. His little hands were always kind of in a fist. He also would not know how to swallow baby food properly. We would stick it in his mouth and he would kind of like "bleck" it out with his tongue thrust forward. Eating was a messy ordeal for him, but he always managed to eat.

The thing about Will that is still very apparent today is he has a social smile and many facial expressions when you interact with him. I often would catch him with his mouth open, "catching flies" if you will, but as soon as we'd play or get down to his level, he would light up and smile. His smile is big and bright and fantastic. He loved faces. He had a baby doll that he would look at and smile. He loved the baby books with photos of babies.

Still, these days nothing really seemed amiss yet. True, there were no words. No mama or dadda or doggie or kitty, but I don't even really remember fretting over that one bit. I had tons of people say to me "his brother talks for him." Lordy, how many times have I heard that one! I remember we were all worried more about the fact that he wasn't walking yet. I don't know why we wanted him to walk so bad. There was something about that. It seems stupid now how bad we wanted him to walk! 

All in all, Will was an easy baby and had no red-flag issues. And also he was absolutely adorable. Did I say that already? 

A New Blog, An Old Journey

They say history repeats itself... so away we go again! I'm starting this new blog to help document our lives and give some insight into my personal feelings, struggles, pleasures, amazement, and amusements that go along with raising my son Will, who happens to be developmentally-challenged, and our family experience as I see it. Will has a big brother Colin who is the angel of my life and a happy, fun, super smart kid. Colin is now 5-1/2 and Will is 3. There's also the big guy of the house, Mick, who is a heck of a hard worker and cool and fun-loving dad. I'm Lauren and the mom. I do a lot of mom stuff and house stuff; a lot of reading and a little too much obsessing over certain cable TV shows and immersing myself in pop culture; I also love music and dancing and singing in the kitchen with Will and sometimes Colin and this is where I seem to spend a lot of my time. I love being around my extended family and wish I could spend more time with all of them. I hope to travel more one day and visit some particular family members my heart longs to see. For now, social media and technology are filling that empty space.

This blog is going to be more of my writing and less photos, though I'm sure I won't be able to resist posting photos and videos every now and again, especially since I've recently been blessed with an iPhone and have all this at my fingertips. Growing up I loved journaling and writing, though it was more about my daily life and feelings than any creative type stuff. Being a mom of young children, I feel like a lot of myself has been put on the back burner and lately I've been yearning for an outlet for all these thoughts and feelings. I'm doing this for myself too and am rather excited! Ideas are popping into my head and I'm trying to keep up. This is going to be good.

Welcome to Colorful Colorado with our gorgeous blue skies and summer breezes; welcome to my new blog. Thanks for visiting and come back often.