Updates! ABA, VNS, Hydrocele, CNA

Hi! Wow! How did almost a whole year go by and I haven't written anything new? Have we been busy? I guess. Aren't we all?

It's January. Ugg January and February: My two worst months. I have been feeling the winter blues coming on pretty strongly. It doesn't help that my little Willie has been constantly sick with one thing or another since September. At least Christmas is over.

Right now Will has a mysterious set of symptoms that have been nagging at me and I just feel like there's something wrong. He's tired all the time. He hasn't been eating much. He's super bored and hard to please. Maybe he's feeling the winter blues too. I just don't know. I fantasize about moving to a warmer climate all the time. I love Colorado so much all other seasons, but winter is not for me. I'll just keep dreaming.

Will has been keeping busy with preschool and his ABA therapy five days a week for two hours each day. ABA stands for applied behavioral analysis. He is starting his 4th month now and he is doing very well over there. They have now got him using a spoon and fork to eat. That's nice! He's not very consistent with it at home but he is good for the therapists. His main therapist there told me she loves working with Will because he is a 'learner.' I'm glad.

Last August Will had a vagus nerve stimulator (VNS) implanted into his chest. This is sometimes recommended for certain types of seizures in intractable epilepsy. Intractable meaning uncontrolled with treatment. Will failed a number of different meds and was suffering from side effects from them. I was uneasy about this decision but now I'm so happy we went this way for Will. At the time he had it implanted he was having 20-30 absences a day. Now at this point we are seeing one or two a week! It is very fantastic. The VNS is comparable to a cardiac pacemaker but for the brain. The device is implanted in his left upper chest. It has a wire attached to it that is coiled around his vagus nerve. Every 5 minutes it 'goes off' for 30 seconds with a certain level of electrical current into his vagus nerve which goes up to his brain. I can't even really describe how it works, but it does. It's worth reading about if you have the time and interest. We can hear a vibration in his voice for the 30 seconds it goes off. It doesn't wake him up at night. I think he is now very used to it and doesn't notice it at all. The only side effect he is having from it is he has a hard time swallowing his saliva sometimes. I'm not sure this will ever go away. Maybe. All in all I'm happy we made the choice to do it. One day we may be able to wean him from some seizure medications. He is on two heavy meds still.

Another thing Will has going on is he has a hydrocele 'down there' haha. Please feel free to look it up. I won't get into it too much, but he's had it since November which prompted an emergency room visit. In the ER they did an ultrasound and confirmed the hydrocele which was likely from trauma. He basically racked himself really hard. The doc there told us it would go down on it's own and to treat it like a bruise. Well here we are two months later and it hasn't changed. In fact, tomorrow I'm taking him to the urologist to find out what's going on. I'm 90% sure he's going to need surgery. Yay. I'll keep you updated on that.

The last thing I wanted to write about is how I got my CNA license in October to be Will's parent caregiver. I wanted to write about this because it's a little bit of a controversial topic. When Will was 10 months old I quit my job to be with the kids more. Then a few months later I started taking him to therapy all the time and it really worked out for me not to work. I'm so deep into it now that I don't know when I would even have time or energy to work. Yet, I know people do it all the time. Now, Mickey has a really fantastic job with benefits and all the good things. However, it's not always easy to make ends meet. Well a friend of mine told me about this program Medicaid has. There are only three states that have it in the US. Will's situation was assessed and he qualified for 4 hours a day, 7 days a week of assistance with activities of daily living (like feeding, bathing, dressing and grooming, diapering, therapy activities, among others) and with his severe language and comprehension disabilities he was given these hours. Now, I could hire a CNA from an agency to come help me with these things or I could do it myself and get paid. Umm, not a hard decision.... So I took the CNA class and passed the state test and am now a CNA. I learned some helpful skills and feel like I can do more for Will and keep myself safe as he gets bigger and ever more physically challenging to control. The idea is to keep children out of state-funded institutions and at home with their loving families. It's really a nice program and I don't see why there aren't more states that do it. I love Colorado and take back what I said about winter earlier. :) It's all about perspective right? The reason I said it's controversial is because I have had a couple people say to me: 'so basically you're getting paid to take care of your kid?' Umm yeah I guess.... I mean: NO! There are so many people out there who do not understand the level of care special needs children need. Will is almost 5 now and the things I do for him are the same things I did when he was an infant, yet he is 5 times heavier and 3 million times more stubborn. Arrrrggg!!! I'm not well spoken and confident enough to say all these things in person so I'm writing it here to clear the air for myself. So anyway, I'm pretty happy I'm doing this and feel like it's already helping with finances.

Well, hopefully it isn't another 11 months before I write again. I have a list of things to write about so maybe this will start that fire under my booty to continue tapping away at these keys. Thanks for reading.

Dream

I just woke up from a dream where Will could talk and we were discussing soccer and cats in great detail.

I wish Will could talk so bad. What I wouldn't give to have a conversation with him. He's almost 5 now.

Aytpical Abscence Seizures; Epilepsy

Well hello there and good day to you all! Things have been happening in Will's life I'd like to sort out a bit and write about. It's a whole big thing. Let's get right to it.

I had briefly mentioned in a previous post how Will tripped on a rug and got a big gash in his forehead that required stitches. Well, a few weeks after that Will fell face forward onto the pavement and hit his mouth. He hit it so hard his front tooth suffered some nerve damage and turned gray a couple weeks later. I'm happy it didn't fall out at least. And then not long after that in the middle of December Will was standing next to me and suddenly seemed to lose muscle control and smacked the back of his head into a corner of a wall. This injury was so scary with the amount of blood. I rushed him to the emergency room in a panic and he had staples put in to close the wound. It has since healed up nicely thankfully.

These are just the major falls with injuries here I'm highlighting. I will tell you there have been countless more falls like this. I always thought Will had poor balance, but at this point it was getting out of control. I had no idea what was going on, but I knew it wasn't right.

Thankfully I had the sense to call Will's neurologist and she immediately said to me, "it sounds like he is having drop seizures." She had me describe how it is getting worse and what they look like. What I have observed happening is that Will will be going about his normal business and then suddenly his eyes roll a bit and his head seems to fall. Sometimes he falls all the way and sometimes he catches himself. It all happens very fast, like 3 seconds at the most. So the neurologist prescribed him a medication to help with seizures. I was very apprehensive about this from the get-go. These are the kinds of drugs a person takes for life. They are expensive and synthetic. But also I am a believer in modern medicine and so I said okay, if it helps I am glad to try it.

This new medication I felt worked for about two weeks. He stopped dropping and he seemed overall better with his balance. But then the drops started again. I called the doctor and she said to give him a stronger dose of this medication. So we tried that. And it was horrible. The kid would not sleep for the life of him. He would fall asleep but be up banging on his door, playing with toys, being all kinds of crazy in the middle of the night for hours! He was so tired in the morning. We all were. We live in a small ranch style house and those kinds of noises are impossible to ignore, even with ear plugs. You can feel the thumping of items against the walls and doors. And also with this increase in meds I one day observed more than 30 little drop seizures. It wasn't helping anymore. I called the doctor again and said this isn't happening. He needs something different. She decreased back down to two pills and added another drug. Cool. Now we have to force the guy to take two medications. But I saw a huge difference in seizures with this new drug. I only saw him drop once in two weeks. And he was back to sleeping fairly soundly which was fantastic!

I also mentioned in a past post that Will would be going back to Children's Hospital for a 24-hour EEG to look further into his abnormal sleep-deprived EEG and now to look at his drop seizures. Well this happened and we found out even more about Will's brain activity.

First of all, this was not a pleasant experience. I brought Will at 11 o'clock in the morning and went through the whole rigamarole of getting his history and all that. Then came time to hook him up to the EEG. They put little electrodes all over his scalp and covered them with a bandage so he couldn't pull them off. Will hates being examined or touched on his head or being forced to lay still. He screamed and cried for 45 minutes while the tech attached him to the EEG. At the same time one of the male nurses came in and tried to put an IV in his arm, all while 4 grown women were holding his little 3-year-old body still. Will's arm was bleeding everywhere. The IV slipped out because he was sweating so bad from the fight. He bit one nurse and scratched another. He was looking into my eyes like, 'why are you letting them do this to me?' It was awful. I was in tears for him by the time it was done. Anyway, the stupid thing with the IV was enough to make me want to leave right then and there. And the male nurse stomped out and said something along the lines of 'I'm not going in there again.' Nice, guy. Thanks a lot for being a d**k at a children's hospital.

So uh anyway... He's all hooked up and falls right asleep, exhausted.

There is a video camera in the room that records him and the parents are supposed to push a button whenever we see what we think is a seizure. He had been tapered down on his new med in order to get a semi-accurate reading since it was working so well.  Mick and I probably pushed the button 8 times or so while we were there. It was a bit boring for Will and hard to keep him in the one room the whole time. He doesn't like to watch TV or play games. I brought toys and books and things he likes to play. It was okay. Mick stayed overnight with him so I could come home and get Colin to bed and school the next day. It was great teamwork on our part!

The results from the EEG actually showed Will is having atypical absence seizures, not drop seizures like we all thought. His brain is disorganized with very frequent spike and wave discharges. He has been diagnosed with epilepsy. Atypical absence seizures present in Will as staring, possibly losing muscle control (dropping), but during these events being somewhat responsive. He doesn't remember anything that happens during them. I don't know what he thinks happens, to be honest. I'd really like to know what it's like for him. Anything he does during these events will not be remembered. The doctor said it happened constantly while he was hooked up, sometimes in clusters and when he was asleep.

After I heard all this I began my online reading and researching. Now that I know what they look like, I can see they have probably been going on much longer than I knew. I feel really guilty about all this. I wish I would have known about these kinds of seizures sooner. I did have therapists and doctors tell me the staring is just part of who he is. He has autism and autistic traits sometimes mimic that of seizures. Nice. Well we were all wrong, weren't we? But now we know I guess.

Here's a video I took of Will in June 2012, so nearly two years ago. I am certain this is a seizure. I could cry. I could have helped him so much sooner.

I hope with the right medication we can get Will's brain more organized and settled down. Maybe he will be able to learn and retain information easier. I hope all our therapy the last few years hasn't been a waste.

Here's Will a couple weeks ago having a seizure. This was when his med was being tapered for the EEG.

They are hard to distinguish from his regular behavior. I wonder if it's just been going on so long, though, that I just expect him to act this way. Since starting the meds he seems much happier and is playing really well. He is interacting and just much happier! He still has his stubborn and screamy and bitey moments, but I know that has more to do with his lack of communication than seizures.

Now you guys are updated. :) Thanks for reading.

A Socially Challenged Family

The winter holidays are now over. I sound extremely cynical when I say this, but I am so glad they are over. I used to love Christmas. I remember growing up being so excited for Christmas, like most children I suppose.

It starts out with me having a great deal of enthusiasm for Thanksgiving. It's a nice day where we get to eat delicious food and spend time with family. But then Thanksgiving passes and Christmas is a month away. Oh boy. I have so much going on all the time that I feel like I never get to enjoy the season. The month is a blur of stress and anxiety. But when it's over I always feel sweet relief.

So while this is all going on my little child with autism who has incredibly-challenging sensory avoidance issues can't cope with what's happening to his routine and all the new things in the world around him. There are bright lights all over the place. The weather is cold. His play space has been overtaken by a pokey Christmas tree with breakable balls he's not allowed to play with. People are sick and coughing and sneezing everywhere he goes. His brother is running on crazy energy anticipating not only Christmas but his birthday. Will gets cooped up in the house and can't play outside. He has to see all kinds of people who talk loud and laugh and it hurts his ears. His mom is stressed out to the max.

It's so hard for Will. I feel I am tuned in to Will's needs and moods more than anyone. I hear a certain noise and cringe when I know the next second Will is going to be upset by it. I go on alert mode and am constantly shooshing children and yelling at dogs to be quiet. I wish it wasn't this way. I once read this quote somewhere online: "A mother is only as happy as her saddest child." This is so true.

Lately I have really been struggling with trying to make people understand why we don't go out and do things as much as we used to. I am generally a social person. I like visiting with people. I like spending time outdoors. I love going out for a meal. Basically all of these things are stressful now when Will is there. There are a few outings he enjoys. He likes going to peoples' houses and exploring them. He likes going to the park. He likes going to the grocery store and opening and closing the refrigerators. Umm, I think that's it. He definitely doesn't like getting cold if we were to go sledding. He doesn't like swimming. He wouldn't be able to handle going to the zoo. He would never sit still at the movie theater. My gosh, there are way more things he doesn't like than things he likes. I could keep going.

I have a hard time saying no to people. I genuinely want to please people. I have always been this way. But I am finding myself having to say no to more things than I care to. Then I feel guilty like I am letting them down. My family is really limited in the things we can do together. What happens now too often is that I end up taking Colin to do something while Mick stays at home with Will or vice versa. A couple times a month Will goes to Respite Care and Mick, Colin and I are able to do something special together. Those are good days. But we hardly ever do anything with all 4 of us together anymore. It's really sad.

So how can I make people understand? More often than not I keep friends more at arm's length where they can't get too close to me for fear of letting them down. It's not right. I know a lot of people but have very few close friends. I have begun to feel more isolated than ever now. I don't see it getting any better any time soon either. And that is depressing. I hope when the spring comes we all may be able to get out more and I will feel better about it all. Warm sunshine always helps.

2013 Evaluation - What's Next?

The developmental pediatrician ordered a few new studies. Will has already had an EEG which was ABNORMAL. I don't even understand what the neurologist was telling me. I look forward to getting the report so I can read it better and hopefully understand. Because it came back abnormal, we will now go back for a 24-hour overnight EEG in January. They will look for seizure activity.

Will is going to see the autism geneticist in February and I assume have a more in-depth genetic study done. The doctor mentioned something about exome sequencing. I hope he gets it done.

Will is getting another MRI of his brain in January to see if anything has changed with his Chiari malformation... or anything else for that matter. The neurosurgeon didn't think it was necessary, but I said: Yes it is. So the doctor agreed to order another one. She's a good one. Plus, Will has hit his head on various surfaces so many times in the last year, I think we need another look. I'm glad for him to do this again.

Will was started on 0.5 mg of melatonin and it is really working well to help him fall asleep at night. It's kinda like a miracle! The only problem we're facing is he wakes up now in the middle of the night wide awake and ready to play. He is up for a couple hours every night at least. I'll keep monitoring this situation and maybe get him some different help. But I'm happy he is at least able to fall asleep now, rather than trash his bedroom for an hour or two as he goes to bed for the night.

Now with a diagnosis of autism Will is on a wait list for the autism Medicaid waiver. The wait list is 6 months to 2 years. Don't even get me started on how I find this to be outrageous. But once he gets the waiver he can get different therapies covered. I get upset because he needs help now. His behavior is getting worse and I hope we will be able to combat it with some behavior therapy in the future.

That's about it for now. Once all the new stuff has been done, I will write more about what we found!

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.

Updates!

Two months ago was my last post. Wow! I suppose with school starting and Mick's new job I've been a bit more busy doing various things. Will's naps have been hit and miss these days and that also dictates my available time.

Colin has been doing really good in school. I'm really proud of him. His parent-teacher conference went very well. She really had a lot of good things to say about Colin. He catches on to new things really quick and his level of understanding is something to be admired. I would say the main thing he needs to work on is taking his time when coloring. This is kindergarten after all and there is a lot of coloring involved. haha. But I am really amazed at how fast he is learning new things. His writing is pretty incredible for a kid who I couldn't get to sit still for 10 minutes to practice writing.

I have been volunteering in Colin's classroom 1 or 2 days a week, depending on what the teacher needs. I go in for an hour and a half and am exhausted! I have mad respect for his teacher in regards to her patience and energy. She really has a huge job and there is just so much going on with each individual kid. She is a wonderful teacher and just perfect for kindergarten.

Mick's new job is going well. He's putting in a lot of hours and driving 2 hours a day to get there and back. He's pretty quiet about the whole thing, but I haven't heard him complain yet so that is a good sign. A great thing is we just got health insurance from this new job. I am so relieved and feel blessed to have it. We were in our 3rd year without insurance and lucky nothing major happened during that time. Oh and by the end of this week I will have some new glasses and look forward to being able to see more clearly again. Sweet. And I'm really proud of my husband for getting this job. He really went for it and got what he wanted. He is pretty cool.

I have recently started helping my friend who has a cleaning business. It's been 2 to 3 days a week and surprisingly I don't mind cleaning other people's houses. It's so much faster than at my own home without all the distractions and mess-makers around. The best part, though, is the company. I feel in such a good mood after spending time talking to my friend and keeping busy. It has really been good. I actually look forward to it!

How about Will? Well he is doing okay. He's got almost two months under his belt now of preschool. At first he cried when I left him there, but he has adjusted to being separated now. It's a small class he's in of 7 little boys. He is able to play a lot of ball and sits in a cube chair during circle time. He likes music and the "Brown Bear, Brown Bear" book a lot. He hates eating at school and I don't think has eaten much yet. I love when I pick him up and see him sitting in his chair smiling and listening to his teacher sing their goodbye song. Sometimes I hear him make sounds like 'hey' without the 'h' while they are singing. It is really cute.

All Will's therapies outside of school are going well. Physical therapy is a joy as always for him. He loves that body work. Occupational therapy has been great too. He's starting to be able to follow simple directions and giggles with his therapist all the time. Speech therapy is actually going pretty good too. Will is learning some new sign language. He can now sign "more," "go," "ball," and every once in a while "stop." I think Will is also starting to be able to say "ball." It sounds more like "mmm-ba," but he is very consistent with this sound whenever we are playing with a ball. Speech therapy is one of my hardest therapies to cope with because Will's progress is so very, very slow. Sometimes I want to give it up. But we will of course keep going for now.

Will's behavior has been going downhill lately. For a while in the summer he was doing pretty good, kind of evening out; but that's sadly over. He has a lot of frustration and takes a lot of anger out on me and now on various items. He is throwing things and slamming doors and sometimes hitting his head against the wall or floor. He is more sensitive than ever to noises that bother him, especially coughing. He doesn't like to be told no or be scolded for doing something he shouldn't be. He breaks down in tears and screams any time we tell him to stop doing something. He has also had 3 head colds now since starting school and that really hasn't helped at all. During his last illness he got feverish and lost his balance. One afternoon he happened to trip on a rug and smacked his face on the tile floor. He got a big gash on his head and a bloody nose. I took him to the emergency room and he got his first stitches right in the middle of his forehead. It wasn't too bad, though. I'm really surprised it hadn't happened sooner!

Afternoon after getting stitches out

 I could talk about Will all day. Next I'll write a new post about his most recent Children's Hospital developmental evaluation and talk about what we learned this time.

Colin the Tenderhearted

Colin started kindergarten this week. So far he thinks "it's great!" This morning he was ready to go at least a half hour early and said "I just want to go to school." His teacher said in a postcard, "Welcome to kindergarten. The happiest place on earth!" I love it!

Yesterday we went to an open house for Will's preschool which he will be starting next week. Yay! There was a little boy there who will be in Will's class that wears a special backpack. I was talking with his mom because I had seen her son at Respite Care before. He's really cute and unforgettable. His mom told me he has a feeding tube. I'm not exactly sure what the backpack is for, but I've only ever seen him with it on and I think it must have something to do with his feeding tube because it beeps as if alerting that something is happening.

When we were driving home I was telling Mickey more about my conversation with this boy's mom and all the helpful things she had told me about getting more help and services and money from various organizations. I said something about the boy and how his mom said he has a lot of health issues. I didn't realize Colin was listening so intently, but he said to us something along the lines of, "I wish I could have talked to that boy with the backpack. I love kids. They are my favorite. I never want to hear about them being hurt."

Oh how sweet is my little angel Colin. I never want to forget this. It is one of the first times he's shown compassion for another individual. I was so proud to hear him say this.

Humiliation

So, uh, this has nothing to do with Will or anything, but I just have to write about this as I need to sort it out. Eleven years ago Mick and I bought our house we currently live in. We were young. We were in love. We didn't know what the heck we were doing. We wanted something we could afford. We wanted to live here for 5 years tops. Five years went by. We got married. We had a baby. We lost jobs, got new jobs. We got ourselves in debt. The market crashed. Needless to say, we are still here. We are blessed that we own our house. It's a little old ranch house and I love it. I may trash talk it sometimes; but honestly, it's my nice space and I really do like it. There are three main things I think it needs: A dishwasher, another bathroom, and some storage space. These things we are managing along fine without, though. And it is our home.

I suppose it's okay to talk about publicly now. Mick got a super amazing new job! He starts in a week and a half. It's just what he's been wanting all this time. He is going to be a facilities electrical supervisor. This job is going to be so good for him. Full health benefits, vacation pay, sick time, stock options, retirement, etc. All the good stuff! I am so proud of him for getting this job. He has worked so hard all these years putting in his time. We're not getting any younger. He needs something stable with opportunities to advance... and we need to start thinking about the long-term future. So this is such a great thing!

Now, what comes with this new job is that it is in Cheyenne, Wyoming. It would be an hour commute away and a lot longer in the snow. We are starting to realize that we should move closer. Mick's family lives up in Cheyenne. It's a decent city with all the amenities you could possibly need. My family is in the same town we live in now. There is a half-way point that I am willing to move to if needed. It's a half hour between each family. It's actually really pretty convenient both ways. Some people may not understand, but I love my family and I really hate to move away from them. They help me so much and provide me with part of a social life I just don't want to give up. So I think it's very fair to say we will meet half-way between the two families. The school district we would move to is also top-notch for special needs kids, which is a huge concern for me.

So that's our idea. We try to sell our old house. Can we? Can we afford a new house? Will we get enough out of our old house to help with a down payment on a new house? These are questions we are working on now.

Yesterday our friend who is a realtor came over to assess the house situation and all the work we need to do. This is where the humiliation comes in. She right off the bat said, don't worry. I know you live here; you collect things, etc. Well we ran down a list of stuff that we need to do to this house. It is a little scary. I mean, I know things aren't as clean as they should be and there are definitely things that need to be thrown out, but I'm not a hoarder! I can't stand having unused stuff laying around everywhere. Things that are Mick's domain are the garage and the yard. I don't have much to do with those areas. I like to plant flowers and mow. But the big stuff is for him to do. Mick is super busy. He always has been. He works himself ragged most of the time. And having time is one thing, but having extra money to put into this kind of maintenance is a big struggle for us. Anyway, we've let some things go. I didn't realize it was that bad. I think it looks pretty nice here myself. But just running down this list makes me cringe with embarrassment.

All we can do now is get to work and hope to impress the realtor when she sees how much we've done in a few months. It's a little bleak maybe, but I have hope. And also it really depends on getting another loan. I just don't know yet. I've got a few inquiries pending right now. If we can't move, it's not the end of the world. I really do like it here. It's my home.

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! 

Mom Thoughts and Possible Rants

This blog is really all about being a mom. Really it's my #1 job. And oh how I love being a mom. I always wanted to be a mom since I was little. I have a great mom and I always admired her. I used to look at her when I was little and think she was the most beautiful lady in the world. She would sometimes wear her hair up on her head back in the 80s and she looked like a princess.

My beautiful mom and I back in the days

My mom is a smart woman who knows tons of things. She is strongly-opinionated and can debate her points well. She was always so good about taking my brother, sister, and I to do fun activities when we were kids. She also worked a lot and it couldn't have been easy for her to juggle everything. I really respect her. She is now retired and enjoying life in the best way.

I used to play with these little critters called Sylvanian Family when I was a kid. These are some of the ones I had, same outfits and everything. I had a doll house they fit in and I remember spending hours with them, setting them up, talking to them, dressing them, making up family stories. I still remember this activity very fondly. My little sister was born when I was 5 and I took a lot with me from having her around as a baby. Someday I would have my own little baby to take care of.

My sister and I

When I was pregnant for the first time with my baby girl Frances, I really started reliving all these old days and couldn't wait to share these kinds of things with her. Now having boys, it is quite a different. I have to reach into my memory bank and think of what was going on with my brother back in the days. My brother was my playmate for our younger years especially. He is 18 months younger than me. I spent most of my time bossing him around. I remember more than anything playing in the sandbox in our backyard with him. As we got older I found him to be the funniest person I knew. He always made me laugh. We would laugh at the craziest things. My brother is the best. I miss him so much. He lives in California with a beautiful family of his own now. Someday when traveling becomes feasible with Will, we will go see them. And they come out to Colorado a lot too. I can't wait to see them again.

Me, my dad, my brother

My brother and I

From what I gather, Colin is really a mix between Mick and I. He is also pretty unique in his own way. Mick's mom passed away years ago, before I knew him, so I don't have her perspective to draw from. But Mick's dad and brother are here and they have some hilarious stories from when Mick was growing up. Mick is the little brother of his family. He seemed to be picked on a lot and made to do crazy things by his brother and his friends. He also got into some trouble in his teenage years... always messing around with friends... enough to be sent away to military school to finish out his school career! I find this to be funny now as Mick is so responsible and laid back.

Mick and his mom

Little Mick. He was so cute!

Colin is a mix between us. Colin's birthday is in the middle of the 28 days between mine and Mick's, although Colin favors the Capricorn side... so I think he's a tad more like me. He's really carefree and likes to laugh and smile, more like me. He's like Mick in his love for playing video games and learning about superheroes. He's also smart like Mickey and is good with numbers. I've never been too good with numbers.

And then there's Will. He looks a lot like Mick, especially the older he gets. Personality-wise, he's just on a totally different wavelength than all of us. Some days I wish I could see some personality resemblance and know what he's going through. I try and try and I just don't know. I do love it when he's happy and laughing. He reminds me of Colin then. I desperately want to understand Will. I remember a lot from when I was a kid. The obscure details and feelings still stick in my mind. I go back to them when parenting Colin, but for Will I just don't know. I am working on it. It's more like I just try and keep him happy. I think as times goes on we will connect more. He's like a baby about many things still, but I think he will make some gains in intellect and I hope speech and I will really get to know him more. He's still my little guy and I love every little thing about him, despite how much I complain about things. I feel like I'm here to protect him and help him grow to his highest potential, just like parenting any average kid.

Mother bear gets mad! So the other day we were at the local bounce house having a good old time. Will happened to make a big milestone there in that he finally climbed to the top of the big bouncy slide all by himself. For 2 years he tried and tried and this time he did it at least 20 times! How exciting! So there's Will at the top of the slide and two bigger boys, probably 8 or 9, are waiting behind Will so he will slide down. Will was just sitting there checking it all out from up top. I encouraged Will to come down. The boys were growing restless. I said to the boys, "go around him." They wouldn't. Then one of the boys said, "what is wrong with you? Why don't you go?" over and over again. I grew livid. My heart beat fast. I looked around to see who was responsible for these boys. No one was there. I then roared at these boys, "Not cool! You guys can wait or go around. He's only 3!" Then Will went down the slide. 

This was my first experience with other kids trash-talking my little son. I'm going to bet this happens a lot in the future, especially once he's in mainstream school. I worry so much about this. He can't speak for himself, so who will? He doesn't deserve to be treated this way, especially when he works so hard to accomplish all he does. It's a mixed blessing at this point as he doesn't understand what's going on yet, but I don't doubt that someday he will. Will he be strong enough to let that stuff not bother him? Will it hurt him? These thoughts plague my mind. And he looks normal, if not older than his age due to his height. That makes it hard for others to tell he might be different than them by looking at him. I don't think these boys meant much by it, but it still pissed me off. Have some respect people! 

Now I can't even come close to comparing myself to some of the bullying children endure that we hear about these days. There is some messed up garbage going on out in the world. Sweet children committing suicide due to being bullied. Beautiful young people being attacked due to their sexual orientation. Gorgeous young ladies being drugged and raped because they are perceived as "sluts." It is so sad. I will say I received my share of bullying in school; a little in elementary school, but middle school was a nightmare. F those bitches who picked on me for my big butt and plain face. I never said anything to them and tried to ignore it; but it was hard. Those feelings I'd prefer to stay back there start to come out, especially when someone picks on my own baby. Now I am a little more articulate, if not overly emotional, and hope I can handle situations like the one above better. Same thing goes when I overhear people making insensitive remarks that "I think there's something wrong with him" or the blatant stares we get from the public at large. Some days I want to scream in their faces to mind their own business. I can see you looking at my son. He is an innocent angel. You are the ones with the problem and no manners. I think as time goes on I will either have some good comebacks or handle it better. Ignore it? I hate ignoring that crap. Mick is so good at ignoring it. He says to me "who are they?" Like why do they matter to you? They are nothing... I don't know. It just does matter to me. It matters to me deep down in my core. It's not right.

Well, what am I getting at here? I was going to write about being a special needs mom. I'll try to do better later. But this is all part of it I guess. It started out with two people who have pasts and our hopes and dreams for a family. Then there's the little people we created and we get what we get. We face adversity head on and try and survive and grow good people in the end.

Thanks for reading everyone. I've been getting awesome feedback from some of you and I appreciate that! xoxo

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.

Arnold-Chiari Malformation

The routine brain MRI Will had done showed an Arnold-Chiari Type I malformation. Ever heard of this? I hadn't heard of this. Initially the developmental pediatrician called me with the results and said she didn't believe it was of significance but asked us to see a neurosurgeon so he could explain it and take a good look. That appointment was two weeks out and I had plenty of time to use my Web-MD mom-ster skills and I immersed myself in learning about this condition. For those two weeks I had a lot of hope and was so sure this surgeon was going to tell us our son would be a candidate for surgery and this could be the answer to all his mysteries. That's not how it went down. Not at all.

First, what is a Chiari malformation? It is a disorder where the cerebellum, the lower part of the brain, protrudes out of the skull and into the spinal canal. Here's a diagram:

There can be many, many different symptoms associated with Chiari. The main symptoms are pain and headaches. We were told as many as 1 out of 3 people have a Chiari malformation and most do not know they have it. It is a fairly-common condition. But for the adults and children who do have symptoms, their lives are a living hell. I also read on one parent's blog a list of possible issues associated with Chiari and this includes (but not limited to): Visual disturbances, impaired fine motor skills, clumsiness, poor motor skills, insomnia, intolerance to loud sounds, difficulty swallowing, poor depth perception, unusual pupil size, poor muscle tone, and developmental delays. I read this list and you can imagine how I felt. I was just so sure getting this thing taken care of would be the answer! I jumped-the-gun way too soon and told everyone who would listen I thought this was exactly what Will's problem was.  

I'll just show myself out!

People who are candidates for the surgery I speak of can have a decompression surgery. It is a craniotomy which is supposed to make room for the protruding cerebellum and would relieve pressure on the brain as well as restore normal flow of cerebrospinal fluid.

We met with the neurosurgeon and he blatantly said this was not causing Will's issues. We had a few questions for him, but he didn't really feel anything as drastic as surgery would make any difference. The one thing that bothered me about this was he asked if Will has headaches. Will doesn't talk and doesn't understand what we are asking him if he's in pain. He can't point to his head and say or signal in some way that he has a headache. He at this point was starting up with his behavior issues and I said, well he's really unhappy most of the time. I had tons of examples, but this doctor just didn't agree. I can't make a doctor agree to brain surgery!

Sometimes people with Chiari can have a condition called Syringomyelia. This is a collection of the abnormally-flowing fluid that is building up because of the Chiari and creates a cavity of fluid called a syrinx down into the spine and can cause many problems including (but, again, not limited to) pain in the extremities, numbness, weakness, loss of normal gait, and dizziness. This is a really serious condition and tends to get worse over time. The neurosurgeon ordered another MRI of Will's spine this time to look for a syrinx and, if there was one, he would revist the surgery idea. Will didn't have one. Here's a pic of a syrinx:

This doctor told us to follow up in a year with another MRI to see if anything had changed. That's coming up towards the end of this year. He essentially told us if there was no change, then not to pursue this further. I guarantee I will fight to have this condition monitored at least every couple of years... And if there is any indication of pain, we will go back immediately.

The back of a child's head after decompression surgery.

We also ended up seeing a neurologist to talk about Will overall and also the Chiari malformation. She agreed with the neurosurgeon, but also did a wonderful job explaining things to me in a way I could understand.

We decided to also get a second opinion from a different neurosurgeon from a different hospital. I was starting to be suspicious that maybe Children's Hospital had some kind of standard thing they told parents about Chiari malformations and I really just wanted to see what someone not associated with them thought. This isn't really rational thinking, but we did it to cover all bases. This new neurosurgeon was a great lady and she is famous in the community of neurosurgery. I appreciated her taking the time to talk with us and look at Will's MRIs. In the end, she agreed with the other doctors. We decided at that point to take a break from all this Chiari business and revamp our focus more on helping Will through his various therapies. I think we made the right decision.

I still have a bit of a fire under my feet, though, about Chiari. I joined several message boards and groups on Facebook for families affected by Chiari. I will tell you there are some really incredible families, amazing warrior mothers in particular, and super-hero children out there. Some of these children have had multiple brain surgeries sometimes before they are even 2 or 3 years old and are fighting for their lives... They live with pain and endure many visits to various specialists and doctors and therapists. The mothers are some of the smartest and most educated people I've ever encountered and they always are willing to answer questions or lend an ear. I feel very lucky to know them. It feels good to be informed of something I never knew existed before. It also makes me feel blessed for all the things we really do have.