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.
Sunday, January 4, 2015
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.
I wish Will could talk so bad. What I wouldn't give to have a conversation with him. He's almost 5 now.
Tuesday, February 25, 2014
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.
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.
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.
Wednesday, January 8, 2014
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.
Wednesday, November 20, 2013
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!
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.
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.
Wednesday, October 30, 2013
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!
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| Afternoon after getting stitches out |
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