JOEL CAN COUNT TO TEN!

I will let the video speak for itself...

(make sure your volume is turned up!)

I am so full of joy!  I feel like I am walking on air.  :)  For those of you who know Joel or read my post "When Your Child Can't Talk", you know what a surprise this was and how much it means to us.

The amazing woman you hear in the video is one of Joel's ABA therapists (the one I call "K").  We have been working on teaching Joel to talk in ABA, with excellent progress, but he is still needing a lot of prompting.  We had not been trying to teach him to count.  That still seemed a ways off.  We have, however, used counting to ten several times in the last few weeks for taking a "break" when Joel has not cooperated with what he was told to do, or told not to do.  He occasionally repeated the numbers with slight interest, so you can imagine how shocked we were today when he took the lead in counting!  Our jaws were hanging on the ground!  I had tears in my eyes as I listened to him count over and over, every time he ran off the playground into the planter.  I am so thankful that K suggested to take video so Joel's other therapists would believe us.  I was able to show the video to Isaac (Joel's daddy) when he got home from work and my heart swelled as I  watched him get tears in his eyes.  I love that I will be able to watch it over and over, but even better, I love that I can walk into the back yard right now and sit Joel down and count with him.  :)  I can't stop grinning from ear to ear.  Tonight it's time to celebrate!

Survival Mode

I have been thinking about this blog a lot lately.  So many things have changed in Joel.  So much has gotten harder.  He has Autism.  It has changed him, changed us as well.  I really need to start posting again.  Updating.  I want his story to be full and complete here. I need to work through my thoughts and feelings...

But that's just it.  I don't want to think about my feelings, my emotions.  I think about sitting down to write, and after several moments of trying to figure out how to put everything, anything, into words I find it's easier to give in to a distraction like the kids or the house.  I sit down at the computer to try and force myself to write and somehow find myself mindlessly browsing Facebook, avoiding facing my emotions without even thinking about it.  Something, anything but thinking about my feelings.  Tears come more easily than I am comfortable with.  Autism is hard.  Behavioral issues are hard.  Life is hard.  Sometimes I feel like I can't write out of pure exhaustion.  Sometimes it's because I have a million words to say, but can't figure out how to say or write a single one.

So instead I just keep looking straight ahead, putting one foot in front of the other.  I call it survival mode.  The problem is that I want to do so much more than survive.  I just don't know how.

Every time I look at this blog it hurts.  It hurts because I look back at old posts and hear the excitement I felt at the progress he was making.  Progress that has been ripped from us in so many ways.  I look back and see the difference in the number of posts between 2008 and 2009.  That was about when his seizures started  coming back after not having them for a couple of years after his surgery.  That was when the Autism started creeping in, slowly stealing what little communication he had and locking him into his own little world.  That was when it got hard to write.

Things are starting to get better.  Joel just started ABA (behavioral therapy) last week and we now have an awesome support team.  We have been doing parent training with the best of the best since June.  It has forced me to face the Autism, which was hard at first, then good.  That's how I was able to write my last post.  But now that the ten-plus-hours a week of ABA has started, and at least one of the therapists is a counseling intern (both of Joel's therapists are psychotherapists), I am having to face my thoughts and feelings in a whole new way.  It's oh-so-hard, but I know it will be good in the end.  I have so much to be thankful for, and while I am going to try to process my thoughts, feelings, and emotions, I am going to choose to focus on the good.

With love and emotions,
Joel's Mom

Project 365 ~ Day 9 ~ Joel and Blue Snowball

Every Thursday Joel likes to "GO" to therapy. I mean he LIKES it! As soon as I tell him "Let's go to therapy" he says "GO" and rushes to the car. Today was no different except that today he took Snowball. He has fallen in love with this blue, stuffed bunny and since it's a bunny, it has received the love and name of our real bunny, Snowball. He insisted on taking it into therapy with us. Snowball had to participate in some way in most of the activities we did. It is actually very cute how attached he is to it. He likes to say "Ohhhh, kissy Snowball."

Joel usually gets a sticker after therapy. Today she asked which one he wanted. Knowing that there was no way he could understand or communicate enough to make a choice like that, I asked him if he wanted Pooh. He likes Pooh. He looked at her and very clearly stated "Elmo". He likes Elmo more than Pooh. Thankfully they had an Elmo sticker to reward his communication. When Isaac (my husband & Joel's daddy) saw the picture below, he was surprised. He reminded me that Joel doesn't like wearing his stickers. I don't know what was going on, but on this day Joel asked me (in his way) to put the sticker on his shirt. Of course, it didn't last long and then he transferred it to my shirt. And then back to his. The whole time not letting go of Snowball.

As you can see, he never did let go of Snowball. In fact, Snowball went with us into Costco after therapy. Snowball and Joel want to "GO!" somewhere, anywhere, anytime. It really is a blessing that this child likes to GO places in the car because he has spent A LOT of time in the car going to doctors appointments. As I drove away from therapy, I saw some people getting on a bus and it made me think about how blessed we are to have a car. It is one of those things that we tend to take for granted. There are many people without a car and if we were one of them, our life with Joel would be so much harder. On top of it being more work for us, he would probably not receive as much medical intervention. So, thank you God that we have a car. Thank you that we live in America where there is excellent medical care, excellent doctors, medicine available, ect. Joel is so blessed to have been born here. It is something we think about occasionally, if he had been born in a third-world country, he would be lying on a mat somewhere seizing constantly. He wouldn't be walking, talking, smiling, interacting. He would be a lump...like he was before his surgery. So again, THANK YOU LORD!

While I have these pictures of Joel in his carseat, I want to mention how much we have appreciated this car seat. I did a lot of research before we bought it, and I truly feel it is not only very comfortable, but it is extremely safe as well. The sides are so protective and keep him upright with his neck in a comfortable position when he is asleep. Joel and I both love his carseat made by Recaro.

And oh, I want to kissy Jo-jo...right in his kissing spot - the dimples just to the left of his beautiful smile (the right side in the picture)...and thank God that he is a part of our family.

Gray and dreary...

...describes my soul as well as the weather. (The weather isn't helping.) I am exhausted, the last several months have finally caught up with me. Isaac is still out of work and we've all been sick a lot. Joel has been difficult. I have been HOPING that what I have been seeing is not seizures...but when Joel's therapists started noticing, I knew that it's not just my imagination. Both therapists have seen possible seizures, the first time I didn't see it and his OT told me about it, but yesterday I saw it along with Joel's speech therapist. The three of us were sitting at a table playing and all of a sudden he looked in my direction but his eyes didn't focus. He started saying "papa, papa" in a whimpering voice (which could be him asking for his grandpa or pacifier - he calls it "baba" which sounds a lot like papa.) His little face looked so scared, terrified, and his eyes were twitching a little bit and just not focusing. It seemed as if he was looking for me but couldn't see me. He was shaking a little and looked really weak. I knew something was wrong and couldn't help but gather him into my arms. In retrospect, I think the asking for "papa" was because he was scared. He feels safe with "papa", whether it's grandpa or pacifier.

I have seen several instances similar to this one each month since about January. I have been hoping beyond hope that it was just a one time thing each time because the thought of traveling the road of seizures again rips my heart from my chest and tears it into tiny pieces. The thoughts of more anti-seizure meds (which make his brain fuzzy, can make him dizzy, and we've been told they have only a 2-3% chance of working since they didn't work last time), multiple tests (which he is now terrified of due to the pain he experienced during his surgery), frequent doctor visits (which he hates and screams the whole time), and ultimately the very real possibility of needing brain surgery again takes away my breath...like someone punched me in the stomach. I feel like I am in a daze. It is striking me once again that I have a "special needs" child and that will never change. Tuberous Sclerosis is something Joel will live with the REST of his life. He will have good years (hopefully) and bad years...good months and bad months. We have been very blessed to have a good year-and-a-half. I realize that and am VERY thankful for it. But I don't know where I am going to get the energy to fight for him again. He is older now, stronger, and much more aware which only makes things more difficult...emotionally and physically. The feelings I felt today could only be understood by a parent of a special needs child. It is impossible to understand unless you've been there. I know I tried to understand before I had Joel and now I know that it is impossible due to the experience I've had. I really appreciate those of you who try to understand, though...and will do my best to communicate my feelings throughout the blog. Today I have been struggling to let go of my hopes that Joel's seizures would never come back, I have always known it was a possibility, but have had to hold onto the hope to survive. I now have to adjust to a new reality. Joel was already scheduled for his bi-annual check-up with his neurologist on Monday. Can we say "God's timing!" Please pray for everyone involved. My heart hurts for my little guy.

Good night, sleep tight and I will keep you updated. Thank you for being here, my friends.

Above: Joel with his Occupational Therapist (OT) ~ Below: Joel with his Speech Therapist

Doctor visits...

...seem to be the theme to my life. Joel and I both had appointments this past week. We both got good news. My heart is fine. It is good structurally and in good condition for my age. I do have SVT (Supraventricular tachycardia). It can be caused by caffeine, but since I cut that out about a month ago and am still having the irregular heart beats it is most likely caused by "emotional stress". Imagine that. Stress. For those of you who have just recently started reading this blog and haven't seen my other blog, I have had more than my fair share of stress in the last 2+ years. Joel was diagnosed with Tuberous Sclerosis at nine weeks old just over two years ago (November 2005), had seizures non-stop until doctors removed almost a quarter of his brain in December 2006. In October 2007 wildfires raced through southern California destroying both my parents and my grandparents homes (my parents are still living in a trailer in our church parking lot). Mix with that Isaac being out of work a lot (the last several years haven't been great but 2007 was our all time low since starting in the construction trade and owning our home) and many medical bills over the last couple years. Also mix in weekly doctor visits, therapy, therapy, and more therapy for Joel and add the fact that I am home schooling the boys (there...I said it...I'm outed...and this is likely the last time I'll say it for our safety). See what I mean when I say STRESS! So the prescription for my heart is to take daily walks of 30 minutes to try to alleviate some of the stress. (The problem is that trying to come up with the time to walk is adding stress.) Oh well, at least nothing major is wrong! :) Joel had a renal (kidney) ultrasound a week ago. He saw the neurologist on Tuesday who told us the results of the ultrasound were normal! And, I don't remember if I told you that all the blood work came back normal! So everything is looking good for his kidneys. :) Yeah! Only problem is that the blood in his diaper for a week is still an unsolved mystery. The neurologist did say that small kidney stones wouldn't show up in an ultrasound and it is a side-effect of the anti-seizure med he is on (Zonegran). (To explain the blood, I am thinking that maybe he passed a small kidney stone.?) He suggested doing a CT Scan of Joel's kidneys but that would require anesthesia. After discussing it and noting that there is nothing to do but take him off the medication (which we are trying to do anyway) if we were to find small kidney stones, and since he hasn't had blood in his diaper for almost two weeks, we decided that IF we see any more blood at all we will go ahead and do the CT Scan, otherwise we will leave well enough alone. Other than his kidneys, our visit with the neurologist wasn't too encouraging. I think Joel has been having great improvement in the development area. But, as soon as that was out of my mouth, the neurologist started asking me questions like "Can he talk in sentences?", "Well, can he talk in phrases?" (the answer to both of these is "no"), "How many words does he have?". When I answered with " about 4 or 5" I got raised eyebrows from him. Other questions about his development went about the same as this. Here's the thing, it's not about what he can't do...it's about what he can do. He can walk, run, climb, kiss, smile, say "Dada", "pu" for up, "out sss" for outside, and "ma" for more (only sometimes when he really, really wants something). He is imitating and he laughs when other people laugh at him (I have been informed that this is showing a sense of humor which is a stage of development). He can put the stars on his stacker toy and he can drop the coins into his toy piggy bank (finding the slots is hard work). He can even do an easy shape sorter although we are still working on this one. He is now playing with me when before he would only play with a toy if he was alone in the room. He seeks me out to play with him, help him, and just give him attention. He communicates with me in whatever way he can (mostly in body language). For a child who we are wondering if he has autism these things are huge. (And largely in part to a type of therapy called Floor Time. I am a huge advocate of Floor Time. I will post more later explaining what it is.) But the neurologist didn't seem to see all these things as the greatest progress. He asked if he has had the evaluation for autism yet, which he hasn't. It is scheduled for the end of May. It was discouraging to be discussing autism instead of all the great progress he has made. I decided that in the end he is the same child that I went in there with and autism or not, he is making great progress. I am sorry that it has taken me so long to make this post...I know that you all were waiting to find out the test results. It took me quite a while to process the results of this week and I was trying to cut down on my stress (since it was a rather stressful, busy week...tax season just makes things worse) by completely avoiding the computer. I think this is the first time I didn't even turn on the computer for three straight days since we bought it. It is good to be back though and thank you for sticking with me. Annie

Happy Valentine's Day!

Joel's Hope home teacher came out today. We mainly worked with him on the computer. It has this great baby program on it that helps his fine motor skills by encouraging him to press the keys while at the same time working on his vision by making his eyes do a lot of work and encouraging his eyes to track. As soon as the computer comes out, his brothers are gathered around him. Joel sits for quite a while playing the games...his favorite is the penguins.

Joel's brothers love him a lot!

Happy Valentine's Day from all of us here in California. To read my Valentine's Day post go to rfamilylove.blogspot.com

Occupational Therapy

We have been working with Joel for months trying to teach him to drop things.

Joel decided he really didn't like the texture of this crinkly pipe thingy.

Shannon has been working with Joel since he was four-months-old. She's great. We had a difficult day with Joel. He didn't want to do anything she tried to do with him. Some days he does great. Today was not one of those days. He's been at a plateau for months now. Shannon says he will be until he starts imitating more. He has kinda started imitating some but only things like banging and only when he wants to. He is much more focused on moving. He can't seem to hold still. Does anyone know if TSC can cause hyperactivity? (Or maybe it's the anti-seizure meds causing it?) Hopefully soon we will make some progress in OT.

Good News Today

Joel loves being flipped upside down. (He craves that type of stimulation.) I love Joel's curls.

I got good news this morning. We got eight more respite care hours for a total of 24 hours per month. This is very helpful as it gives me more time to spend with the older boys. Maybe Isaac and I will even get a date or two each month. I also got a call stating that a request was put into regional center for them to fund Joel's autism evaluation. If that's approved the evaluation will be a lot sooner than if we go the insurance route. We are praying that God will open doors to show us the route we are to take. He is faithful in guiding us. Anyway, today we got new hope that there is a better way to get his evaluation payed for.

Joel had OT today and his therapist said that until he starts imitating he has plateaued. It makes sense because he has been working on the same thing in OT for about 6 months. So, would you please pray with us that he will start imitating. This is very important to his development. I want to say thank you to all of you for praying for Joel and for the encouragement you give me by reading my blogs and leaving encouraging comments. I can't tell you how much it means to me. It really helps me get through everything. So again, thank you.

Boo-boo

Earlier today Joel had his first 1 hour PT appointment. (Up till now he has had 30 minute appointments.) He did pretty good lasting 45 minutes. When we got home the whole family was out in the backyard together enjoying the beautiful day. Shortly after I took the photos of the boys below, Joel tripped on something and fell and hit his face on the cement. His tooth went all the way through his lip in the same spot it has twice before (so now it has happened 3 times in the past 4 months.) You can see the boo-boo on his chin in the above picture. He trips and runs into things a lot because during the surgery they removed the part of the brain that controls the right side of his vision, therefore he doesn't have vision on his right side of both eyes. Please pray that it will heal fast and never happen again. It makes my heart ache to see him get hurt (and he gets hurt a lot due to his vision.)

9/7 Update

Joel Isaac - August '07 - Isn't he beautiful!

A quick update with more to follow later. The consensus is that the weird eye movements are not seizures, but are more likely his eyes having trouble following. I feel in my gut that this is true and am comfortable with this diagnoses.

About a month ago, Joel's physical therapist (PT) said he was about a 15 month level and catching up 3 months worth each month. She also said we could cut our visits down to once a month and may only need 6 months more in PT. Praise the Lord!!! All the glory goes to God because He led us to the right doctors for Joel, He led us to the Tuberous Sclerosis Family Picnic in 2006 where we learned about the surgery, and He made it clear to us that the surgery was the right thing for Joel (even though it was the hardest and scariest decision of our lives.) Since the surgery Joel has made steady, incredible progress.

A couple weeks ago we attended the 2007 Tuberous Sclerosis Family Picnic in Irvine. Once again we learned something new. The Tuberous Sclerosis Alliance had published an article titled "Musical Ability in Children with TSC Does Not Show Developmental Delay". (To access this article click link and go to page 9 in PERSPECTIVE - SUMMER 2007 PDF File) The short of it is that there was a study done that showed that children with Tuberous Sclerosis Complex (TSC) were not delayed in music ability and so music therapy may be VERY effective. Music therapy has taught other children with TSC to talk. I am going to do everything I can to get Joel in music therapy because he is very behind in communicating. Please pray that the insurance will cover the music therapy. There is a very real chance they won't. In that case I will have to start fundraising. If you would like to help with Music Therapy (MT) please check back here as I will be posting a Paypal account you could donate to specifically for MT (only if the insurance won't cover it.) I will keep you updated.

Lastly, (I know, I know. I said a quick update. Oh, well ;) today Joel had a couple episodes where his whole body shook mildly for a minute or more. It made me remember that it has happened before (so much goes on with him that I like to watch him to see how often it happens before I start to worry, so often if it doesn't happen again I forget.) The shaking seems to happen when he is really concentrating on doing something or excited. But it is unusual and I can't make it stop. I feel in my heart that the episodes are seizures and that scares me so much that I can't think about it. If they are that means that our whole family once again goes down the road of trying new combinations of meds and always watching Joel, waiting for the next one. Our life becomes consumed with many more doctor visits, tests, phone calls to doctors, trips to the ER and meds. It is hard on Jonny and Jason because I don't have as much time for them and even though they are very understanding at their young age, I don't like it. I do know, though, that God is in control and I have to lay Joel at His feet in prayer. Please join me in praying for Joel that the seizures are not back and that he will continue feeling well and developing. Please also pray that I can accept God's will and if the seizures are back that God will give our entire family (but especially Isaac and me) strength to get through the coming days, months, years. Pray that we can comfort Joel when needed. I am convinced that it is the hardest thing in life to watch your children suffer and not be able to do anything to help them.

Thank you all for your support, in prayer, emotionally, physically, and financially. We could not have made it through the last 2 years without each one of you.