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

When Your Child Can't Talk

It is pretty high up on my list of most difficult things in life.  It breaks my heart daily.  It stinks.  It is hard in so many ways.

IT is not being able to talk with my seven-year-old son.  Oh, I can talk to him.  I can talk at him.  But I can't talk with him.

Sometimes he talks to me with his eyes.  They are trying to tell me everything.  Sometimes they do.  Like when he's happy.  Or when he's sad.  Or when he is loving me.  But they can't tell me what he's thinking.  They can't tell me where it hurts or exactly what he wants.

Sometimes his lips move with no sound and it looks like he is forming words.  But try as I might, I usually can't make out a single one.  It hurts to know he is trying to tell me something and I can't understand.

Sometimes he squeals, or says "Daddy, daddy, daddy" over and over, or says "tatatatatatatatatatatata".  I wish I knew what it meant beyond being excited or upset.

Is it because he has autism?  Or because they removed the speech portion of his brain at fifteen-months-old?  Did the speech not properly re-map to the other side of his brain?  Is it because of epilepsy causing damage to his brain?  Or is it because of the benign tumors in his brain caused by Tuberous Sclerosis?  Only God knows.  Only time will tell.....or won't.

All I know is that when I look deep into his eyes and he gives me a huge toothless grin, my heart melts into a puddle.  I love this boy.  And that makes it all worth it.

With love and heartache,
Joel's Mom

Joel's Developmental Evaluation

On Thursday Joel had the developmental evaluation that we've been waiting about nine months for. He did really well, even showing skills I didn't know he had. He impressed his mommy! It took about 3.5 hours and was totally exhausting. Both of us were exhausted.

The results: Joel was diagnosed with Developmental Delay. (We already knew that.) He was also diagnosed with a mild case of Pervasive Developmental Disorder, Not Otherwise Specified (PDDNOS). This is on the Autism spectrum but he barely qualified and I'm not concerned. He is still the exact same baby as before we got the diagnoses. Something to take into consideration is that a lot of behaviors that could look like Autism could be caused by his visual impairment. They have a lot of side effects that are the same. So I am not sure that he actually has PDDNOS, but it's okay that he was diagnosed with it because it may help him qualify for more services. It also could effect the way I teach him, so I'll have to do some research.

Here are his levels of development based on the Bayley Scales of Infant Development -III:
Cognitive - 18 months
Receptive Communication - 15 months
Expressive Communication - 14 months
Fine Motor - 15 months
Gross Motor - 18 months
Joel is 32 months old and if you take away the 15 months that he had non-stop seizures and wasn't learning it would leave 17 months that his brain has been able to process information. So I think he is doing wonderful and is an amazing little boy! Side note: It actually worked out really well that it took us so long to get the evaluation because he needed to test at the 18 month level in cognitive thinking for the Autism evaluation to be accurate. And he did! A month ago he wouldn't have. It was suggested that we continue all that we are currently doing as well as start speech therapy.

I love this picture taken on Mother's Day. It has nothing to do with this post, but I like to post pictures because I think it makes the blog more interesting.

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

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.

The Geneticist

Sorry, I've been putting off this post because I don't even know where to begin. (I've kinda had writers block.) Last Thursday we saw the geneticist. She explained the results of Joel's DNA test. In very, very simple terms his TSC is a result of a deletion in the TSC 2 gene. This particular mutation has never been seen before (which simply means the lab who did the test has never seen this and it has never been reported.) There is no data bank with all the DNA test results from everybody, so it's hard to know if this mutation has been found before. It should be fairly simple to find out if Joel's TSC is hereditary, Isaac and I will both have to be tested. If either of us has the same deletion then more research will be done. If neither of us has it then Joel's case is spontaneous. The kids will not need to be tested until we know if we carry it, except she suggested having Jason tested at the same time as us since he has a couple non-pigmented spots (which can be a sign of TSC) and is having headaches. If he was ruled out from having it our minds and hearts could be put at ease. Now we come to the more complicated part...insurance and the effect testing us would have on insurance if any of us were found to have TSC. All three kids have CA Healthy Families. Everyone except for Jason is also covered by private insurance. Jason was on his own policy because he was a higher rate due to asthma when he was an infant. Jason alone was $200 per month so when he got the Healthy Families we thought long and hard (and prayed) and decided it was the best decision to cancel it. IF Isaac and I are tested and one is found to carry TSC than Jason would probably be uninsurable. Healthy Families will end at 18 (assuming we will qualify until then, which every year we are right on the border) and then he would be without insurance possibly with a disorder that requires a lot of routine expensive testing. So...we wait to be tested and in the meantime I am applying to get Jason covered with the private insurance again. Easier said than done. Jason already saw the neurologist who ordered the MRI. So as I am applying I have to reveal that he saw that specialist and they will request the records and then....will they not cover him until after the test is done? If not, what if he has TSC? Then he will be uninsurable. This is all so complicated and confusing and time consuming! Please pray that everything will go smoothly and that God will protect our little Jason and our family. Please also pray that during this time I will find a productive way to relieve my stress and that I will not worry. On top of everything else, the geneticist said she wanted Joel tested for autism. The dreaded "word." One third to one half of all people with TSC have some form of autism. The amazing thing was that when she said it I had two thoughts race through my mind, the first being "NO, NOT MY BABY! He has already gone through so much." The second thought that went chasing after the first was "Even if he has autism, he is the exact same baby I walked in here with and he will not change by me knowing." The geneticist said that he might as well be tested as he has some autistic features because there are many benefits he would be eligible for if he has the diagnoses. I can't deny that it makes sense, if he has "it" he may as well get the extra help and if I know he has it I can be working to do something to help him. The complicated part of this is that I called to make the appointment (which they are already booked all the way to January) and I must know that the insurance will cover it before I book the appointment. His private insurance will cover it but there will be a rather large cost to us. The healthy families will cover it IF I get an appointment with C3 (which is run by the hospital but I think it's state funded) to have him evaluated and get them to write a prescription without the word "autism" anywhere in his paperwork (this seems like it is going to be hard because if they evaluate him and see autistic features...which they will...they won't want to leave it out of their notes.) I called C3 today to get an appointment and they don't have one until the end of November, which means his evaluation at Children's won't be until at least March. I will be left wondering if my baby has autism for at least 6 months. I know it sounds selfish but this is torture for a mother. For Joel it means that if he does have it then that was 6 months missed that we could have been helping him. I hate the insurance system. I hate that I can't help my baby right away. Put all the things in this post together in the last week and it makes for a busy, stressful time. I think it's time for me to go open my bible for some encouragement.