Why I let me son quit playing a sport he loves

From about as early as I can remember I played sports. When I was really little I remember doing tap, ballet and then even gymnastics and baton twirling. Nothing really fit for me until I started playing softball. I started playing when I was about 7 until I was probably 11 or so. I remember playing ball with the boys in my neighborhood and generally just loving the game. Playing softball helped me make friends and kept me active outside of school.

When Alvin took an interest in baseball I was hopeful. My son who knew the rules of the game at 6 years old and could tell you who a player was simply by watching him throw had found the game I loved when I was a kid.

The first year of tee-ball was a success. While Alvin had a hard time at first watching him learn to love the game made it all worth it.

This year when the time came to register I was concerned. Due to his age he would be moving up to coach-pitch baseball. I was concerned about the increased skill it would take for him to keep up and also worried about the social aspect. These kids would talk more and expect Alvin to carry on conversations with them. Even with all our concerns we agreed tp let him play understanding that we would once again be put in the position to advocate for our son to be able to do the same things the other kids did so easily.

The first few practices started out great. Alvin picked up hitting the ball well and did the conditioning (stretching, drills and warm-up running) with only a little guidance. He loved playing all the positions he could and had even come to understand that he wasn't allowed to play catcher because of his "C" on his head.

Then things started to change. The kids started to catch on that he was different. The coaches brought out different pitching equipment and Alvin couldn't keep up with the changes. He failed to hit a ball in the rest of the practices and never in a game. I started to see the kid that used to love playing the game doing everything he could to get in trouble to not go. One day he started acting up and told me that now he couldn't go to his game because he was in trouble.

This was the clue that something was up. It all boiled over in the last game he played before we removed him from the team. Close to the end of the game on a rainy and dreary day Alvin was once again up to bat when he was hit in the hand by a pitch in the hand. He immediately got upset and prepared to take his base when he was told not to. In coach pitch rules the player simply gets another try and does not get to take his base. He was crying and the other kids thought it was funny.

Alvin was so confused and I could see it in his face. He was crying and just wanted to leave.

It was that day that we made the decision to let him quit.

The kids picked on him at times and the only thing he was learning was how to avoid being bullied. That night I got in touch with the Monroe YMCA and started to make a change.

The next few weeks of starting a new program were rough. Things had drastically changed. There were now many people on the field and the social aspect was frightening to say the least. We met so many great volunteers during the season and by the end Alvin would get to the field early and immediately start pitching.



The last game was the where it all paid off. Alvin had been through a lot and in the past month and a half not been able to hit a ball on his own. Finally in the last game Alvin got not only one, but 2 hits by himself. His confidence was back and the look on the volunteers faces was wonderful. At that point all of the volunteers had heard his story and knew what he had been through. He and all of the other kids were out there to have fun and do their best.

The moral of the story hit home though with Alvin's sister Elliot. Having to explain to her why Alvin was quitting was tough. We don't believe in letting either of them quit just because something is difficult. The goal is to do your best (and with sports at their age) have fun doing it. At 4.5 Elliot learned another hard lesson as well. Not everyone is going to accept her brother or kids like her brother the way we do. She learned that we will fight for all of them when the time comes.

So where are we now? The YMCA has a few other adaptive sports coming up such as bowling and basketball. Top Soccer should also start in the fall as well.

For us, things have changed. We always had hoped Alvin could play "normal" or "mainstream" sports. At this point we know that just isn't going to happen. While he continues to make great strides socially and physically he just isn't ready yet. So for now we let ourselves grieve at the new discovery and we move on. We move back to acceptance and letting our goofy kid learn to be himself and have a great time doing it.

The Special Needs Spidy Sense

One of the things that W and I seem to have developed like most special needs parents is that ability to sense something is up with another child or adult has more going on than it might seem.

Two weeks ago was engineers week and with my current job I have the opportunity to go out and present to local schools and talk about what it means to be an engineer and do a small design competition. I've been doing this for 3 years in a row with the same 2 guys and its always fun. This year though during the second class we were presenting at one certain boy caught my eye.

The second class we taught was twice the size of the first and as the kids came into the library  a young boy caught my eye. He was socially more awkward than a the other kids and seemed to be a bit of a loner. Even the table he sat at the kids didn't acknowledge him much.

During the presentation though is when it all clicked. I called on the young boy to answer a question and as he started to answer the other kids in the class began to whisper. He was instantly frustrated and said he couldn't think with all the other kids talking. Without blinking an eye I told him to think about it and just raise his hand when he remembered and I would give him a turn to answer the quest. After just a minute he was able to collect his thoughts and give his ideas on the topic.

Once we got the activity started I mentioned to one of the teachers that I felt bad for him. I figured something was up but didn't want to say anything too straight forward in the chance that I was way off base. Sure enough the teacher confirmed that he has autism and is in a special program that allowed for kids on the spectrum to be in class with typical developing kids.

Later as we were leaving the school the senior manager presenting with me asked how I knew what was going on with the boy. I told him about Alvin and he seemed so impressed. To me it was just second nature to just give him a minute to collect his thoughts but to manager I was with it was far from normal. He then told me he as panicking when it happened because he didn't know what to do.

I guess when you live with a child like this you just have a sense when something is up in others. W and I have always just been able to feel things like this out when we are out in public, but this was the first time I've dealt with it directly in a social situation that wasn't geared for special needs kids.

Therapy Cat

Back in February we had a little incident where Alvin let our 12 year old cat out of our sliding glass door one morning and we never found her again. I was heartbroken because we had Katie a female calico since Will and I met and while she was old and temperamental we loved her. Back in early August our good friend brought over about 6 balls of fluff. She had 4 kittens that were ready to be adopted and had 3 that still needed a home I wasn't completely ready for a new cat, but I turned the decision over to Will since he would be home with it more than I would. That day Schrodinger joined our family. He was the last one out of the kennel and the first thing he did was curl up on Will's chest.

Their first meeting

Surveying his new territory

What has transpired over the past few months is amazing. Alvin wasn't one to show affection to anyone or anything. He was always reserved with his emotions to some degree. When we got our dog Ophelia we thought she would be the perfect companion for him. While she has been a great addition to the family,she didn't bond with Alvin the way I expected.

The cat has suddenly changed things though. From the time of his first vet visit Alvin started showing more compassion and attachment to this cat. When we took him to get fixed Alvin was comforting him the whole time and showed compassion that we were not expecting.

Playing with the dog

 The cat  himself fits in well. He plays with Ophelia all the time and keeps her on her toes. With the kids he is gentle and loving.

What really got me about this cat was when Alvin was hospitalized last month. I've never had a cat that was horribly affectionate or social with us. They were aloof and didn't seem to care much if we were around or not.

When Alvin was in the hospital Schrodinger just seemed confused. The boy he slept with part of every night was gone.

Once Alvin came home he was beside himself happy. Alvin wasn't allowed out of his sight most of the night and as soon as he went to bed the cat was right beside him. This cat now even has a small bed in Alvin's bed and he uses it. Most days you can hear Alvin walking around saying "I love this kitty."

He loves this kitty and I think the kitty loves him back

Never before would I have thought that a cat could be a therapy animal but I have been proven wrong. The cat follows Alvin everywhere and slowly but surely seems to be helping Alvin come out of his shell emotionally. An example of this was just last night he asked to have a sleepover in Elliot's bed. Granted this only lasted for about 20 minutes but he snuggled with Elliot. Elliot was beside herself happy that he wanted to and cried her eyes out when he left. 

So I guess I've now come to realize that any animal cat, dog, horse whatever can benefit a child with autism or other brain disorder can really help as long as the child/adult has a bond. In our case it just happened to be a furry little grey fluff ball that needed a home.

Back to school and back to less sleep

So after Alvin's dental surgery it was time to start school. Alvin's sleep habits over the summer had been gradually getting worse but we figured once school started it would get better again, but they never did.

Even with school starting things just have not been getting better. It hasn't been uncommon to see him up at 3 am and not be able to go back to sleep. He then would have a full day at school with reading and math, both in his regular class and resource room. By the end of the day he came home and just melted down. Things continued to get so bad that I started to video the episodes every afternoon and evening. While we knew he could do the homework, he was so exhausted that he mentally couldn't focus and his way of dealing with it was to scream and cry.

The screaming and crying episodes gradually kept getting worse until he finally started lashing out at me. The final straw for me was the week before Elliot's birthday he hit me 5 times. That's when I knew it was time for us to discuss it with his complex care management team.

The same day we were scheduled to meet with the CCM team he actually had to miss school. The night before he didn't sleep at all and was pretty on edge. Once we arrived at the meeting with the lead pediatrician on the team and she saw the video there was no doubt left in her mind. We had been working for the past year on how to regulate things at home and nothing was really working so it was finally time to consider medication. Part of me was ready to hear this, but part of me wasn't. I never wanted to have to result to using medication to control his behavior but for all of our safety it was time.

The next week was spent by the pediatrician at Seattle Children's talking to not only our pediatrician but also a pediatric neurodevelopmental doctor. The big concern was to find the right medication that would control his out bursts and help him sleep without making him a zombie.

Finally after almost a week of waiting trazodone. Its an antidepressant drug used to regulate serotonin levels in the brain. We were told we would start out at a low dose then increase as needed to get the desired out come or so we hope.

Now its been almost 3 weeks and some days it seems to be working while others not so much. He still has his (at times violent) outbursts that are normally directed at me. We still need to give it a little more time though until we say the dose isn't working.

The other issue that we still need to look into is getting more services through the autism center. His pediatrician at Seattle Children's thinks they could be doing a lot more and we need to follow up with them and see if they have any other areas that could help him.

Other than these issues school seems to be going well. I have an IEP meeting tomorrow and parent teacher conference next week to discuss his academic progress and how he is transitioning to the new school year. The initial feedback I've gotten from his general education teacher is that he knows the schedule better than she does and always reminds her of when he is supposed to be doing something else!

The long awaited meeting and next steps forward

A few weeks ago we finally had our 9 month long wait to meet with the Seattle Children's Autism center. This was a meeting that was talked about in October of last year when we first met with the complex care management team. The biggest fear I had with this meeting was that somehow the doctor/nurse practitioner we saw would look at Alvin's case and determine that he was not on the autism spectrum and we would begin a new fight to keep services that he gets during the school day.

First off the autism center itself is very nice. From the moment you walk in things are much different than any other doctor's offices we have visited. The lights are dimmed and the ambient noise was pretty low. All efforts are in hopes to make it a calm and inviting area for the kids. There is even a separate waiting room if needed with no noise and low light.

The meeting itself went well. We talked with a nurse practitioner for about an hour and a half going over everything from his initial diagnosis in Alabama to his eventual discovery of hydrocephalus. In the end after reviewing all the evaluations and reports he concluded that major additional testing wasn't needed. He said Alvin actually falls more on the higher functioning range of the autism spectrum and not really Asperger's at all.

The main recommendation that came out of this was for a new speech evaluation and further speech therapy. Since Alvin will be attending a mainstream 1st grade class in a few weeks it is important that he be able to communicate with his piers and teachers well.

Just this past week we met with the speech pathologist and once again Seattle Children's is on top of things. The speech pathologist was great with him and in just a few minutes discovered a motivating item for him (iPad) which helped him complete the test questions and on short breaks he got to play any game he wanted. She was very clear as to what the expectations were and he seemed to warm up quickly to her and completed the testing with no issues.

The end result was that she felt he needed a lot more assistance with his speech, which we basically already knew. He is age adjusted for speech about 3 to 3.5. He scored very well in answering what words were the opposite of others but when it came to answering questions about a story with no pictures he had a very hard time.

So the next step is to fight with our insurance to get them to cover the increased need for speech therapy. He is only allowed a certain number of visits before he has to be re-evaluated or they see no need in covering it.



Also this next week is his big oral surgery. On Wednesday we are headed back to Seattle Children's to have his baby top front 2 teeth removed and his first set of adult front teeth that are extra. They are going to do x-rays right before the procedure to be sure that is all that is going on and hopefully catch everything in one shot. We know already this is going to be a tough surgery and he will be pretty uncomfortable for a while. I've been pretty open with him about what is going on Wednesday and so far he is handling it well. I also have a good plan with the anesthesiologist to have him take a pre-medicine to relax him before he goes back to the operating room to go to sleep. This should help with his anxiety like it did last time and hopefully make it overall much easier on him to handle.

Right now we know what we are up against and have plans in place to do the best we can. From keeping his favorite bear and super hero cape close by to having plenty of scrambled eggs, pudding, yogurt and ice cream at home for his recovery I think we are as prepared as we can possibly be at this point.

T-ball 2013 The good, the bad and the weird

Alvin's first t-ball season is officially now over and its such a relief.

Over all I would consider the season a success for him. It started out in April which in Washington means the cold weather is still hanging around and the first few practices were quite cold. Alvin was normally the only kid in shorts (because we couldn't manage to get him to wear anything else!) and never complained about the cold.

Making sure he is in the right place

Alvin started off as awkward as ever. He was in a group of kids he didn't know and tended to not try to engage them. During warm ups instead of throwing the ball with other kids he preferred to go out to the outfield and pretend to pitch like a pro. 

The first few rounds of batting were also rough. The combination of hydrocephalus and autism make hand eye coordination really tough, so swinging a bat to hit a small ball was quite a challenge. There was one practice that I remember specifically that he missed the ball 6 or 7 times. The kids on the team started talking and snickering a little but he was determined as ever to do it.

Overtime he gradually started catching on. He started to throw, not like a major league pitcher every time but more like a normal player. When he couldn't figure out how to stop a ground ball with his glove he made up his own way with his foot.

Batting though was always fun for him during games. Every single time he walked up to the plate and did a routine to get ready just like the pros. The funny thing is when he did it all the way through he was more able to hit the ball. When the coaches stopped him from doing it then he had issues making contact.

Playing first base

The highlight of the season though was the last game. As I said due to the combination of hydro and autism hand eye coordination is rough. Well the kids had been working on hitting coach pitch balls for a couple of weeks and Alvin hadn't had much success. The last game of the season Alvin did the unexpected. On his second pitch from his coach he acts like he is going to bunt then hits it! The coach was shocked and all the kids were cheering. The next at bat the same thing happened and he was able to make contact and run to first base again. The coach later told me that once the other kids saw Alvin hit the ball every single one got a hit when they went up.

So the question now is, will we do it again? Right now, I am saying maybe. There is a lot he can learn by being around other kids his age. He is thrown into it and with very little adult help is slowly pushed to interact with other kids his age. He is still very shy and anxious but every little bit of social interaction lessons are worth it.

Team picture

End of the year party

1 year later

April is Autism awareness month and yet for me this week all I can think about hydrocephalus.

One year ago this week we met with a neurologist who showed us Alvin's MRI scan and told us about the cyst in his brain. He said not to worry but we would be referred to a neurosurgeon to see if surgery was needed on the cyst or not.

Two days later we got the call from neurosurgery at Seattle Children's Hospital neurosurgery department saying that he actually had hydrocephalus and that he would probably need surgery the next day.

I remember distinctly the day we heard the words hydrocephalus. The rest of the day and night W and I spent hours  researching on line what the treatment options were and trying to get in our heads what was going on.

On 4/20/12 we met with his surgeon Dr. Lee and started on this journey. She went through the options with us and suggested an ETV (endoscopic third ventriculostomy) instead of a shunt to treat his hydrocephalus. She said he may need a shunt later in life, but with a high failure rate, if we could do the ETV and it work we would have a better overall outcome for him. The news of the surgery followed a flurry of activity of an eye exam to be sure his optic nerve wasn't compressed then signing forms and prepping for surgery.

On 4/20/13 Alvin will play in his first tee ball game. While some parents will be there and hoping that their kids make a good play or hit the ball into the outfield, our thoughts will be in a different place. We won't be concerned with the things that other parents are worried about. Instead the thoughts of how far he has come in a year will be more on our minds.

One year ago he was having major surgery to alleviate the pressure in his brain. One year ago he was in the ICU and our world had just been turned upsidedown. The last year hasn't been easy. With a site infection and numerous scares from his inability to communicate have kept us on our toes. Both W and I are constantly on the lookout for the signs that things are going wrong.

Now one year later he is playing a game he loves with normal kids. He amazes me all the time at how far he has come in the past year, but right now it hits the hardest.

The dark side

Lately I have been wanting to write about things but with the challenge of a teething baby, a normal 3 year old and dealing with all of Alvin's challenges the words have been slow to come and the decision to talk about things has been hard.

Alvin in general has been doing well. He is still catching every bug out there and his dentist issue is just odd, but then again what's new. The dentist found out that he has 2 extra front teeth that will need to be removed some time in the next couple of years and will need to be followed closely by a oral surgeon to be sure they are removed at the correct time.

What I want to talk about now though is something that I haven't really mentioned before. The quote "Will you love me even with my dark side" comes to mind in what we have been dealing with things lately.

Back sometime at the end of last year as Alvin became more verbal his outburst also became more present. These outburst are normally confined to home and normally happen when he's stressed or had a hard day.

These outburst I'm speaking of are only directed at myself and husband in the form of screaming at us, hitting or kicking. They are never directed at other kids or his sisters, but just us. He gets frustrated with something as simple as not being able to find a lego figure or Elliot taking one of his many hot wheel or just singing.

What ever the reason the outbursts are never seen as ok and he never gets away with them without some form of punishment (losing his leap pad, going to bed early, ect).

I do though however understand them. He gets so upset and angry when things don't go his way and he can't deal with the change. He knows that he is safe at home and with us so that is when he acts out.

So why am I saying this, partially because it needs to be said. This isn't a part of autism that is talked about much and it needs to be said. Alvin underneath it all is still a good kid. He loves his siblings and dog and loves to play baseball.

Alvin though has started to understand that he is different. Kids in tee ball try to talk to him, but he can't. He wants to play/interact with other kids at times but struggles to figure out exactly how to do it.

So what is next? The next step is to talk to his complex care management team about it and push to have the new autism evaluation completed as soon as possible. With the autism re-evaluation completed we can be referred to a specialist who can help us and him deal with the changes that we are beginning to face.

So while we may be encountering his dark side right now we are far from being done with the fight to help him overcome it.

I'm back

First off I apologize for being gone for so long. With the end of my pregnancy things just got crazy and I ended up just posting bits and pieces to facebook and twitter rather than sitting down to actually write.

Now that Alvin's baby sister is here and I'm back at work, things are starting to calm down  just a little. Well at least until the first of the year.

The biggest thing going on right now is our family was asked to participate in a research study at Seattle Children's Hospital. Its called the Comprehensive Care Management study. About 600 families were selected and of those half are in the control group and half are in the intervention group. We are in the intervention group and are meeting with staff once a month to meet with a pediatrician, dietitian  nurse practitioner and when needed a social worker. The first meeting we had was rough. It was 2.5 hours of meeting with each individual on the team and going over everything that has happened up until that point. From the autism/asperger's diagnosis to the more recent hydrocephalus discovery. It was draining to say the least. The staff was great but in the end it felt like everything we had ever done for him was questioned.

We met with a nutritionist, doctor and nurse for 3 months straight once a month to go over not only health issues but also his weight issues. Now that things are calming down we have a 3 month break and in that time he will be seen by a pediatric dentist who specializes in autistic kids, a neurogenetics screen and the staff is having us re-do is autism screen as well just to be sure we know the extent of his autism.

We had another scare with his seizures returning and so far the MRI's show that his ETV path is clear but the underlying cause is still unknown. I can't stress enough how great the staff at Seattle Children's has been through all of this. The doctors, nurses and all staff we have interacted with have been wonderful in accommodating him as well as the rest of the family. The staff in the research study haven't treated us like a number but as actual people that are doing the best we can with what we have been dealt.

So this next year I plan to be back. I have a lot of things I want to talk about. Some with autism and some with hydrocephalus and some with both. So I apologize for being gone for so long but my plan is in 2013 to be back in force to talk about life and issues that come from having a son that is literally one in a million.

The point of understanding

There comes a point where we knew that Alvin would start to understand that he was different. Before the hydrocephalus surgeries his differences were harder to point out. He spoke a little differently and had different social interactions. His motor skills were choppy but for the most part it was hard for others, especially kids his age to tell what was going on. Most kids just thought he was funny or odd, but it never was really a factor.

Lately all that has changed. It occured to me during this hospital stay that Alvin  is starting to understand that he is different and that the hospital is now going to be part of his life.

This all started when we were in the playroom. There was a doctor's table with commonly used items such as a thermometer, pulse oxygen monitor, and stethoscope. While we were in the play room Alvin had a lot of fun showing me how these were all used telling me things about them. While I was impressed with his understanding it was also hard to take.

During the stay last week, from the first clinic visit all the way through discharge Alvin showed me that he does understand what is going on. He knows something is wrong with his head. He knows that the doctors are there to help but they do things that hurt sometimes and it can be scary.

When we got home I basically forgot about some of it until Sunday when we went to a local playground to get some much needed outside time.During our time there I noticed something very specific. When Alvin was playing with the other kids and his baseball cap was on covering his incision he was treated as normal as ever. He at one point took his hat off and went back to playing. The same kids that were just playing with him saw his head and made comments and ran away. These exact same kids started treating him like there was something wrong with him. Alvin noticed this and once again did something that I admire. He calmly came to me and said he wanted to go home so I got Elliot and we headed home.

Once again that was a kick in the gut. I see him deal with it so well, but later the emotional meltdown came out. He asked to be held and carried. He asked me to not let go.

Alvin knows that he is different now not just because of his mannerisms but because of the large "C' on his head. He knows at home he is treated just like Elliot, but for some reason the other kids don't see him the same way. They see him as odd or gross and avoid him which is so different because at home Elliot seeks him out and could care less that he acts weird or has stuff on his head.

We are struggling with this as a whole. So far the only thing we can do right now is tell him that some kids are just mean and don't understand. His family understands him and right now that's all that matters. Right now all we can do is just work through it with him. He really is handling it all very well for his age and we have been so proud of him. He is starting to better understand his conditions though which at times can be heartbreaking. We had hoped he could stay blissfully less aware for a while longer but the day has come and now all we can do is support him through it.

Hydrocephalus and ETV. When reality sets in.

One of the things you go through after the diagnosis of autism is a reality check. It’s when reality sets in and you face what your child’s new future is. Everything with your child seems uncertain and all of a sudden and you have to go back and understand that things have changed. The things you thought your child would do may no longer seem attainable. So you sit there and make new plans. You start taking things more day by day and learn what a new normal for you and your family is and will be.

To paraphrase a friend of mine, it’s hard to remember that during this time your child is still the same kid you have always known. It takes some time to look at them and remember they are not just their diagnosis. But slowly things get back to what the new normal is and one day you just can’t imagine a time where it wasn’t like this.

This same thing has recently happened to us with dealing with Alvin’s diagnosis of hydrocephalus. The diagnosis and surgery hit us so far out of left field that honestly it’s just taken a longer time to process what has happened and how it will affect us moving forward. The more I have told his story the past few weeks the more things have hit me. Both W and I are still working to really come to grips with what is currently going on with him and what his future will entail with the diagnosis.

I am an engineer and do my share of analysis and in this case I can analyze all day and never really be ok at this point. I’m ok in front of Alvin and E, but W knows me. I always have the facts and numbers in my head.

The general numbers for the procedure Alvin had (an endoscopic third ventriculostomy or ETV) is a success rate of approximately 80%. So in the first year 80% of the patients that have had this procedure the result is that the drainage of cerebral spinal fluid adequately controlled. The second year success rate is about 78% and the known time that the procedure is most likely to fail is within the first three to six months after the operation. The reasons behind the failure can vary, but the most common is that the hole in the third ventricle either partially or fully grows up and spinal fluid can no longer flow through the path

We know that no matter what, his condition will need constant monitoring by his neurosurgeon and the staff at Seattle Children’s Hospital. We know that for him, contact sports like hockey and football are out for good for the rest of his life. The chance of something happening and his catheter being damaged are just too great with both of these sports. Soccer and t-ball/baseball and gymnastics are all possibilities still but will have to wait until after his next MRI and meeting with the neurosurgeon in July to know for sure. Until this appointment we also have to keep a very careful eye on his incision. We have to constantly monitor it for any separation of the skin, blood or leaking of fluid. If anything comes up its back to the clinic or Seattle Children’s Hospital neurosurgery clinic or ER we go.

So what is Alvin’s overall prognosis? For all the information he has he should be fine. He will grow up learning more and more about his condition and how to manage it. We are working on getting him a bracelet as well to identify that he has hydrocephalus in case something happens and he can’t speak. The condition will never completely go away though. The best thing we can hope for is that for the rest of his life he stays in a constant state of remission where the fluid levels remain normal and all drain paths are working correctly. Could he have more surgeries? The answer is yes. Dealing with this condition means never really knowing what is going to happen. So future surgeries to repair his catheter or do a revision to the procedure are always a possibility for the rest of his life.

We know that for the next few months at least we are taking things one day at a time. If at ANY point we notice things that are troubling like loss of verbal skills (goes from talking one day to not being able to talk the next) or suddenly seems lethargic and responds less verbally or to verbal requests we have to get him back to the hospital immediately. These are all signs that something may have gone wrong and he needs immediate attention by the neurosurgery team.

Last week I had a conversation with one of the nurse practitioners in the neurosurgery department after Alvin gave us a scare the night before. She said Alvin was one of the kiddos that scared them. His hydrocephalus was diagnosed much later than some and if his fluid pathway is blocked and the pressure starts to build up again we won’t know what it is going to look like. For him it could present in a number of ways so anytime we have a concern we should keep an extra close eye on him and possibly get him to the ER at Seattle Children’s so that he can be evaluated and effectively treated by the neurosurgery team.

The worst part of all of this for at least the next few months we cannot continue with many of the activities where he is around groups of normal 4 to 5 year olds. Things like playgrounds are allowed only if there is no equipment he can fall off of. Gymnastics and socializing in a structured environment with normal kids is all on hold due to the fall hazards and the possibility of his head splitting open if he rolls on it too much. All we can do is keep home life the same and treat him as much as possible like any other kid his age. We can still go on outings and do all of the other things that we normally do but we have to be extra careful of his actions for the next few months.

So this is what we are dealing with. It’s an adjustment for all of us and is definitely taking time to get used to. Here soon though things will begin to take on a new normal for us and we will gradually learn to accept the new challenges the hydrocephalus diagnosis has presented to Alvin and all of us.