Maddness, Maddness, Maddness...! and a little laziness

Okay, things have been crazy here. So once we sold the home and started RDI and a more intensive listening therapy, we spent some more money on seeing a biomedical DAN doctor for both Brinn and Jaden. This has been very expensive--yet, informative.

Both had blood drawn and urine taken (also good stories) and the results came back with Jaden having a high level of yeast and bad bacteria in his GI track and stomach. He also had other problems with mitochondria function that will be issued later and has an immune deficiency. Because of the yeast and bacteria Jaden went on an antibiotic for a week and then for the following 2 weeks he went on an anti fungal. Jaden had about 8 or 9 supplements each day and some had to be taken at certain times of the day and some that couldn't be taken at the same time as others. Talk about a real life logic puzzle. Oh, and on top of that we had to put Jaden on a SCD (Specific Carbohydrate Diet). If any of you know what that is then you may have some idea as to the hardship Jaden and I are going through.

Brinn's results came back with a little more relief. Her yeast and bacteria levels came back normal so she didn't have to go on the SCD diet, but she still can't eat gluten or casein. But Brinn does have a mitochondria problem and can't make energy out of fatty acids so she is taking supplements that will help with that along with some supplements for her immune deficiency. She is actually on more supplements than Jaden which boggles my mind.

So just to paint a brief picture of my day I have to make different meals for each of the kids and make sure each of them gets their 8 0r 9 supplements at the right time of day. Then they both have 30 mins of listening therapy on top of Jadens 6-9 hours of ABA therapy a day and Brinn's 2 hours of RDI. They both have preschool 2 days a week and Brinn's school is 25 mins away where she also has therapy one day a week too.

Also, to add to the list, I have to make Jaden's ketchup, mayo, candy, bread, yogurt, and muffins because he can't have any sugar...I mean any. The only sweet things he can have is honey and certain fruits. He also can't have any complex carbs which means no grains...wheat, rice, corn, lentils, oats, nothing...only dirt. So his bread and muffins are made of almond flour (ground up almonds) it is about $10 for 3 cups. Also, it takes three days to make a loaf of bread because you need drained, home-made yogurt to make the bread.

So yes, my life is a little crazy and time and money are very scare and hard to spare. At one point I was encourage by Jason to make a 3 day visit to New York to see a good friend because I was going a little batty. So I used some frequent flyer points to get free tickets to New York and spent three days knitting, eating, and laughing with my friend Natasha. It was the was the best recharge I could ask for. Thanks Jason and Natasha.

So now I'm back and trying to pick up where I left off. But it didn't help that when in New York I started to watch Jaden's ABA sessions I recorded just before I left and seeing some of my instructors doing very unprofessional behavior. You would think that with a camera recording everything you do during a session you might be more aware of what you do. I found one of my instructors would just sit there for a good length of time just watching Jaden playing. Then they would take 10-15 min naps while Jaden colored on the walls or made huge messes. I saw the instructor waking up, wiping their mouth and seeing Jaden's mess and saying "oh, crap!" My thought was "oh crap is right!"

I started crying when I saw this and some of the other instructor's behavior and sessions. Some sessions only had 1 trial!!! No Reinforcement. I cried not just because I was wasting my money but because Jaden, who never sees the light of day, is stuck in this room doing nothing while my instructor sleeps or just sits there texting friends and talking on the phone. This poor boy's life is not easy and they only make it harder for him.

Needless to say, I sent a very stern email out and I am holding a future mandatory meeting to re-train these instructors. I received many apologetic responses and I was pleased to hear them recommit to to promise they made when I gave them this job.

I will be making some changes though to help enforce their commitment to Jaden. I'm going to install a one-way-mirror on the door and NO cell phones are allowed in the therapy room. Also, they will be watching and critiquing sessions recorded of each other and of themselves periodically. I hope this will help.

But Jaden (despite the subpar instructors) and Brinn have both made great progress. It is amazing what you would do for your own kids that you would never do for yourself because of the work.

I just hope that God will bless my efforts.

Motivation

This is the reason why we do what we are doing and endure what we are enduring. I am sure anyone else would do the same.



I forget sometimes the cute chubby baby that could eat a whole hot dog and a banana in a sitting when I'm dealing with the screaming tantrums of today. I sometimes wonder what another two years will bring and I hope for the best with all we are doing.

Not so Quiet Sitting

So just to let those of you out there who are wondering what I mean when I talk about a quiet sitting I thought I would share a little of my piece of heaven with you. This was a Quiet Sitting I did that lasted about 20 minutes because Jaden wanted to be carried up the stairs to the therapy room but we are trying to teach him that he needs to walk. I didn't post the whole 20 minutes. I only posted about 1 min. But if you want to know what it is like real time just watch the video 20 times. Trust me you'll love it....as much as I do.

So moms of non-autistic children count your lovely blessings. You don't know how much work you are missing out on. Don't get me wrong I wouldn't trade my love bugs but dealing with the symptoms of autism really is one of the hardest things I've ever done.

Enjoy!!!

The First One Bites the Dust

So sadly the rumors about hiring college students are true. They are very flaky. It is interesting how because I don't have a business sign out front or have them dress up for work I tend to be no more than a mother hiring a babysitter.

I have had to cover shifts, as my instructors call the day before or the day of and can't make their shifts. I tend to do the most hours of therapy for Jaden out of all the instructors, which saves me money, but it also makes me a horrible mother and wife. I tend to get a little burned out.

But only after barely working for me for two months I had an instructor quit. They seemed to enjoy working with Jaden so I was surprised when they gave me their two week notice. The funny thing was was that they were the most proactive in getting this job. They really wanted it. I guess they learned what their calling in life really wasn't.

So I'm a hiring again. I've had only a few resumes and only one golden applicant. We'll see what happens. You may think what's the big deal about hiring a new person? But let me tell you the costs:$75 for one newspaper ad endless time calling schools and calling applicants and interviewing them. Then it will cost an extra $250 to train them...at least. So our bleeding account will be blood letting for a while

...And with all the stress my infamous cold sore is back. Lovely.

Fueding Brothers

Those of you who are familiar with therapies for autism then God bless you because you are probably facing the same problems I'm facing in this life.

I am currently dealing with a couple feuding brothers from that family of Autism Therapy. Older Bro Aba is stating since he is older he is much wiser and that he is changing with time and adapting despite what his younger brother, Rdi, says. Aba says that many autistic children have and still are being cured, rehabilitated, or recovered from autism because of him. While Rdi says Aba only helps children deal with static situations such as the classroom environment where 1+1=2 and where there are rules with right or wrong answers. But what do they do to try and make a friend or to make a decision when there is no right or wrong answer?

So as you can see I've invited both these feuding brother therapies into my home and let them have full reign with my children. Boy, it is sure hard to keep track of ABA time and RDI time. During ABA time I have to take the feathery language out and make simple request or demands (imperative statements...for my fellow RDIians). I have to keep my expressions and tone neutral unless I'm reinforcing Jaden's correct choice or playing during play time.

But in RDI land I have to kill those imperative statements (commands) and use declarative statements. Now my dear friends this change from ABA , Superman, to RDI, Clark Kent, is killing me. I often find myself saying "Doh!!!" Every time it is time to eat. ABA superman personality takes over and tells the kiddies "Eat!" Instead of using my RDI Clark Kent voice to tell them "You look like you are hungry. Those gluten free pancakes sure look delicious. Yum Yum!!!"

My little sunshine on two legs gets all RDI and she loves when I do crazy facial expressions to communicate. She thinks it is more of a circus show rather than a way to communicate. I still love her anyway. It is a good thing I don't have to video tape it...right now anyway. I could be blackmailed...and badly. I'd do anything to keep it off You tube.

Jaden gets both. He gets the 35-40 hours of ABA a week and during his down time I'm telling him about the birds outside, the pack of dogs that live next door, and about the national budget deficit. He mostly likes to hear about the popcorn popping on the apricot tree or about the wheels on the bus go round and round.

But I have to say ABA has helped Jaden immensely. He has gone from not saying a word 2 1/2 months ago to saying a couple sentences. His tantrums have decreased and he is more able to communicate simple needs. He still has a ways to go but despite what RDI says ABA has helped him. But I will be doing RDI with him as I go along. One thing I love about RDI is that there is no 'window' of time to teach your autistic child. So we may end up stopping ABA after a couple years but I can continue RDI as long as I need to.

Brinn is starting to talk and says all the words Jaden uses frequently. She is making a lot of progress and is starting to be more social.

One thing I love about having these two is watching them play with each other. It warms my sad heart at times to know that they will always have a friend.

I Vant to Vipe your Vindows

So I had an interesting conversation today.

A window washer came to my door today (and this is not a joke) and wanted to wash all my windows for a hefty price. I told him we were selling our house (as I pointed to the for sale sign in my front yard) and said we were a little tight on money. He asked what I could afford and then I told him he wouldn't come back if I told him. I then explained why we were selling the house and that all our money was going to our autistic kids.

He asked if my kids were the 'smart autistic kids' and I explained 'no they are like most autistic children.'

Then he proceeded to tell me that "Autism is the coolest thing to have."

Was he serious? I stood there to see if he was joking. I remembered the destructive tantrums the day I realized that not just one but both my kids were autistic and the crying I went through because I knew that both my love bugs may have a hard childhood and a dependent adulthood and they may not have the opportunity to have families of their own.

Then I kindly explained to my friendly window washer "You couldn't be more wrong."

...But then he decided he would wash my windows for $25 instead of $150...and they are pretty high windows.

Tip Toe Through The Tulips

I came across this description of what it was like to raise a child with a disability and this sure hits home to me. It is by Emily Perl Kingsley.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch you breath, you look around...and you begin to notice Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Absolute Bedlam Analysis (ABA) training workshop

Okay, for all you who would like to know how to tame a lion or how it feels to be eaten by one just ask me...and it can happen in that order.

Jaden's training workshop went smoothly and every one of the instructors I hired did really well. I have to admit I lucked out when I hired these kids (Okay, at the most they are only 4-6 years younger than me). But I discovered during these training sessions how much Jaden really loved his loved ones.

So all my instructors did a sitting with Jaden and Jaden loved them and thought they were hilarious. Then the Big Bad Momma came and sat down in front of him to make him imitate her clapping her hands. I mean, how dare she?!!!

Boy did he give it to me! Jaden didn't have a tantrum the first hour with the other instructors but he sure told the world he wasn't going to do a thing Mom said or showed him to do. I had to do a Quiet Sitting with Jaden that lasted a half an hour. Okay, for those of you who know how to do ABA therapy, try to explain how hard it is to block a tantruming autistic toddler and keep your face neutral for a long period of time, especially when it is your child. I was almost in tears halfway through and only able to get a hold of myself by imagining I was far far far far far away--and a little bit skinnier. Luckily my back was to the camera and to my audience of 8 people. Only the consultant could see my face but he was nice enough to pretend I was far far away--and hopefully a little bit skinnier.

By the end of the day I was drained. It is funny how emotional stress can affect you. I felt I was doing heavy manual labor but without the good workout.

But that was only the first day of training. The second day was even better.

Nothing says "Bad Parent" like when everyone can get your child to do cartwheels and flips with a verbal command while you, the boy's mother, can't even get him to sit in a chair by sitting on him. But I have to admit I did feel a little better when Jason (who was there the second day because it was on a Saturday) volunteered to do a sitting. I could tell Jason was very confident because he is very good at getting Jaden to laugh his guts out when they are playing--but ABA is not a playing session. Jaden starting screaming his guts out when Jason only said "Come here." That was Jason's first Quiet Sitting and only one so far. I don't think he would like to repeat it. I couldn't remember how long Jason's Quiet Sitting was but the whole time I was thinking "Whew, at least it isn't just me. Jaden doesn't like his dad either."

Of course, I had to do a couple more sittings and just as I predicted Jaden told me he loved me like only he could. Needless to say, I am a trifle deaf now and emotionally scarred. But I guess I'd do pretty much anything for my Cookie Stealer.

Who knew your kids could differentiate their loved ones by clawing, scratching, and screaming at them. But if that is the definition of love then I'm one cherished mother.

So when training was over I was ready for a lobotomy.

Ba ba ba ba ba ba ba ba ba ba...

Mad Dash.

Okay, our training workshop for Jaden's ABA program is done. Jaden is dead beat tired and I'm dragging. I don't really feel like blogging but I thought I'd let the fam that reads this boring blog know we are done.

Good Night! I'm going to bed (even though it is 6:30 PM).

Parachute. ....Check?

Okay, tomorrow is the day. The day I jump into the deep end of the pool without any knowledge of how to swim...and with major stomach cramps (from eating of course). Will I survive? Will I be able to afford it? Who knows.

So tomorrow morning we start training our hired (students) instructors and me to do ABA therapy.

As of right now we can afford about 1/2 year, hopefully, of therapy for our two little babies (The Cookie Stealer and Curly Sue). Therapy is short for at-home intensive 40 hour-a-week ABA program for Jaden and RDI program (soon to figure out more details of this therapy. It is still just letters to me) for Brinn. Whew! I'm tired already.

We can't afford to give our little ones a future they deserve and will get (Gosh Darn It!) and own the roof above our heads. So as most of you know I have to sell my Barbie Dream House. . . and my Dream house :) in order to afford it. But of course we are still waiting for my dream house to sell. It is funny that now my dream is to have my dream house to be someone else's dream house. Isn't life interesting. Well, at least you know I love my kids more than the roof over my head.

But despite the lack of funds we will be going ahead with the two programs. I'm going to do all I can to save and get money (cutting/coloring my own hair..Aaah!, eating dirt and beans, re gift old wedding presents, cutting off legs and sleeves of winter clothes to make summer clothes for the kids--I'm not kidding, sell my house :(, lose weight so I can fit into more clothes I already own, and other fun tid bits of cutting corners and stealing them to get more money). And then I hope God will bless us...maybe he'll bless someone else at the same time by helping them find their dream home.

But for every $10 Jaden gets 1 hour of therapy. So 50 cents is starting to look like a lot to me. I now take the trouble to bend over and look like a cheapskate in front of everyone in order to pick up a penny.

So until our parachute opens (selling our home) we are free falling into the abyss of bankruptcy. Some people end up hitting that chapter 11 (or Title 11 according to US code-just ask Jason) sidewalk, but until then we have faith that our chute will open.

Ignorance is Bliss. . . Or is it? And for whom?

Ignorant people are great. They don't intent to make themselves look bad...but they do...to me anyway. It is those people at a crowded store (let's say Costco or Target) who roll their eyes or leave the isles leaving the comment behind their backs as they leave, "some people let their kids get away with anything." Yes, sadly I hear these comments and see these gestures. And yes they do hurt because I'm human. I'm still working on becoming that confident superhero I'm aiming to be but until then I'm soft as a marshmallow.

People don't understand the tantrums are a part of my everyday life. I wish I knew what a normal child was like, but I can't spank my kid every time he hit, clawed, spit, or screamed bloody murder of the tenth degree because then he would have a very sore hinders and a very guilty feeling mother. So I do as any negligent mother who encourages bad behavior...I ignore it.

I have learned to tune it out and I forget that others haven't learned the same skill yet. So that is my purpose for getting out of the house and taking my children with me--to make you all tolerant and patient people. Because every Mom dealing with special needs children or normal tantruming children need some empathy out there.

Okay, I'm stepping down off my soapbox. Thanks for listening. The end.

But it gives me a good idea. I think I'll post what it is like for parents with autistic children. I like talking with other mothers because a lot of them feel the same way. Alone. They stay home because of the tantrums. They spend all of their money they can squeeze out of their paychecks to help their kids but it never seems like enough. It is a very desperate situation to be in. Not a lot of people understand autism. To be honest I didn't know what it really was until my nephew was diagnosed with it. So just to be informative I'll help others understand.

RDI? ...Reprogramming Detrimental (Parental) Interaction

So we had Scott, our hired consultant, come and meet with Jason and me to get the feeling of our family dynamics. So what it came down to was Jason works a lot and never really sees the kids except for weekends (not by his choice of course) and Brinn's always strapped to a chair in the car as we drive Jaden everywhere. But there is playtime for her to interact with us.

So we verbally gave Scott a report as to our relationship with Brinn and our roles and parental methods and personality. Jason claimed to be more on the Hippie relaxed side of the spectrum and I was a hippie when it came to some things and a Nazi when it came to others. Uh oh, I'm a Nazi?! I guess I'm the one who's going to need therapy now.

So Scott came back and then watched Jason play with Brinn for 45 minutes and then watched me play with Brinn for 45 minutes. Oh, and he recorded it too so that he could watch it again and again and point out how bad of parents we really are.

Okay, who can play with their child normally while you are being recorded and critiqued. It was like "Okay Brinn, catch the ball. No, catch it. Please, just catch it I'm being graded here. Please! help me out. BRINN CATCH THE DANG BALL!!!" I don't think I got a good grade.

I would love to get a clip of how the play times went because it always consisted of Brinn running out of the room with us chasing her dragging her back to the activity she was supposedly playing with us. It seemed more like a game of chase. Hum....it reminds me of every Sunday in the foyer of the church.

So we haven't heard back from Scott yet as to his critiques on our recorded "play times" but I often wonder if he is waiting for a response from the Child Protective Services. Oh man, if only Brinn could catch that ball.

Student Stampede

Okay, hunting students is officially in season . . . hypothetically speaking of course (depending on where you live I guess). But once BYU shut its doors to its students they all came applying for the two positions I have left on my ABA therapy team. I have 12 messages a night when I come home from my therapy runs (for the kids. Not for me...yet) asking for a job.

The thing that amazes me is their lack of ability to follow directions in the ad I posted in the school paper. Only a very few (let's say 2) of the students actually went to the website describing what, where, when, and how to get the job. I also had a girl ask for me to pay her gas, and ask if it was okay to take 4 weeks off, and ask when would she get a raise. Where do these kids come from???

I forgot to mention that I talked with another mother who is doing an ABA program. Talking with her and her experiences I decided to go with Scott rather than Jaden's therapist. Mostly because Scott had more experience with just ABA and also something in my gut said to go with Scott. And everyone always knows I go with my gut in all matters...particularly when it comes to food.

So I have hired two people already and I need two more. There is one kid who I really like who is pre-med and can give me at least a year commitment . Then I have 7 other interviews to hold to make another decision. And if you know me I am the last person to ask to make a decision.

Also, Jaden has made a lot of progress. His therapist got him to say "I want candy" and to identify and say all his colors. He also calls Brinn "baby". She is not Brinn she is just "baby". Jaden now to my delight has taken to copying the dances and songs on Peter Pan and Jungle Book. He loves to sing and dance to King Louie's scat song and the pirate song. He also calls elephants "Hathi" since that is the name of the elephant on Jungle Book. Just to clarify we don't watch these movies all the time.

Brinn still walks like a ballerina so I got her some stiff soled shoes to try and get her to stop. It kind of helped but she'll just walk up to a table or a chair and holds on while she gets on her tippy toes. We have also been doing some stretching exercises so that her tendons don't tighten up which could eventually mean surgery. Ouch!

So therapy will start for Brinn in a week. And Jadens therapy should start in two to three weeks.
Also, thanks so much aunt Kerry for your help. We are trying to scramble to get materials for Jaden's therapy and your help has made a huge difference (and we miss you).

WOW!!!

Okay, I gave Jaden an apple after he asked for one (which just consists of him saying "apple". I'm pleased enought that he can say this word. But lo and behold as he is eating he points to me and says "you". I was shocked to say the least and then he points to himself and then says "I". !!!!!!!!!! Oh my goodness.

Okay, for those of you who aren't too familiar with autism this is an amazing feat for Jaden or any autistic kid. Pronouns are very difficult for kids with autism. It takes them a while for them to pick them up. We haven't been working on them at home since I didn't think he could grasp that concept yet. But heck, pronouns here we come!

Hiring and Advertising

So here is the scary part. I need to hire 4-5 people to work for me to do this ABA program. I called and talked to another mother who has been doing her program for 18 months now and got great tips and advise. So the things I had to do to get started was create a website that explains the job in detail so people know what they are applying for. I called BYU, U of U, and Westminster, and had all their psychology and special ed departments put up fliers and mass email their students about the job for me.

I hired the therapist who has been working with Jaden for the past 8 months from the school district. She is getting married and needs a little extra money since her future husband is still working on his undergraduate degree.

I have two interviews this week from psychology students from BYU and both seem very capable for the position.

But one question keeps bothering me. How am I suppose to interview people for a job I don't know how to do myself? So my personal qualifications are 'Can you stand to wear earplugs?' and 'are you a happy person?' I think that covers all the basics.

Now we need to sell the house so that we can continue to pay for this program not to mention Brinn RDI program.

Yikes!!!

Does he understand?!

Okay, we I put on the movie Finding Nemo because the kids haven't seen it in a long while and I honestly forgot what happened in the movie (besides Nemo getting lost of course).

So when the kiddie fishies were talking about the boat they were seeing and were calling it a "butt" instead of a boat Jaden was laughing hysterically. Did he understand the humor there? I would love to think so but I'm not sure.

Okay, you know you are a sad person when you get excited when your child may understand a potty joke.

Grasping Straws and Line of Attack

As any parent with a child with autism, you would do anything to cure or diminish the symptoms of autism. I have heard some crazy theories and drastic measures that parents have taken. Some I do not agree with and some I'm willing to try even if I'm not fully sure of the science behind it. The most drastic I have heard of is of a family who took their child to Mexico every three months for a full blood transfusion. When I heard that I was horrified.

I am trying some less intrusive measures to help my two little rug rats. So far we have put them on gluten and casein free diets. Boy has it been a pain to try and make the daily menu differ from day to day. And then try to get the kids to eat the stuff. I think a steady diet of marshmallows couldn't hurt. It is something both gluten and casein free and they will eat it.

We are also doing listening therapy. We have been doing that for a while and Jaden is now comfortable to listen to his music in the car with his bulky headphones.

Also, we have the opportunity to get Jaden into a chiropractor to treat Jaden for his autism at a discount rate. I have never been one to go to a chiropractor. But throughout all this, I'm going to keep an open mind. But I have to admit, I've been there three times and I have been very fascinated. It is amazing how our muscles weaken when we are exposed to substances our bodies are sensitive too. It is crazy.

He is going to a preschool aimed primarily for autistic children and children with other learning disabilities. I love the teachers at the school. They love what they are doing and put their hearts into it. I knew I liked them when Jaden's teacher choked up while I was explaining that we were selling our home as we were trying to get Brinn into as much therapy as possible too. They have been giving us diapers, laundry detergent, and food at each visit. They are the most caring people I can imagine.

I have been doing some reading and research and I have decided to do a ABA therapy program at home. I talked to a consultant on Monday and discussed his plans for what he thinks both Jaden and Brinn need. A program will cost about $30,000-$35,000 a year per kid. This is why we are selling our home.

Jaden will probably need 25-40 hours of ABA therapy a week. Brinn will only need 8 hours of RDI therapy a week. It was a good thing we caught Brinn's symptoms early. If you don't know anything about ABA therapy it consists of the child sitting in a chair the whole time having information thrown at them. It may sound harsh and intense, which it is, but studies and personal stories have said that it can cure children of autism with a higher success rate. I have explained to Jason that we are investing in our grandchildren by doing this.

Oh, and by the way, it is hard to find an ABA therapy consultant in Utah. I had to go through many disconnected numbers and moved consultants to find the one I met with. But the exciting news was when I was talking with Jaden's and Brinn's therapist, he mentioned he had run programs before and he was willing to do it for a much lower cost. But we will still have to hire other instructors (college students at $10/hr) to help out with Jaden's therapy. So I think we will hire Jaden's teacher to be our consultant.

This is what is going on right now and I'm about to post some ads in college newspapers, and solicit school district, special ed therapists I know.

So essentially I'm going to be starting a home business that will lose a lot of money. Any investors?. . . Anyone?

Double Whammy

The past couple of weeks I've been watching Brinn carefully. I'm always very sensitive to any signs of autism that she may have. I've had one major concern and I have brought it to the attention of my family and Jason and we all have noticed it. Brinn doesn't respond to her name or noises made in order to get her attention. She also avoids eye contact most of the time. This was a sign Jaden had at her age. It worried Jason and I at the time, with Jaden, but we weren't sure because the delay in speech wasn't known for sure.

So now that we are seeing it in Brinn I'm a little sad. I hope I'm just ahead of myself but I don't want to be in denial either. So we've decided to watch her carefully for the next few months and to work hard with her on talking, listening, and eye contact. Then who knows we may have to sell the house to pay for both our kids' therapy. Life never gives you a holiday.

Antibiotics?!

Jaden had a ear infection and we took him to an instacare and they perscribed Jaden cefdinir. He was on it for three days and those were the worst three days I've had in a long time. I had to call for help from my mom to get me through each of those days. Jaden has huge tantrums once a day or more some times. But this was a continual thing for the whole day. People tend not to see the huge tantrums because I always stay home. But my mom was a part of the whole experience. It was nice for me to have someone see what it is like to have an autistic child who has these sort of outbursts. My mom told me it was such an eye opener for her and she never realized what patience is necessary for these tantrums. But since these tantrums were an all day thing I was going berserk myself. Thanks to my mom's help we were able to handle the storm. We took shifts as each of our patience ran out.

We couldn't figure out why such a change in personality. The only thing I could figure out was that is coincided with his antibiotics for his ear infection. I took him off the medication and the next day he was much better. He wasn't totally normal but I could handle him for a good period of time without breaking down in tears with despair and hopelessness.

So we did some research online and found out that antibiotics can affect the symptoms of autism and some people think contribute to it. I called the doctor and he prescribed some different antibiotic that he had been on before and Jaden seemed to do well after that.

So I wonder if an antibiotic can make such a difference, what could a diet do or not do for Jaden. I've heard a lot about gluten free and dairy free diets helping autistic children. It will mean more work but I'll have to do what I can to help Jaden.

The Bumpy Road Ahead

So since we last had that consultation we have had quite an experience. We continued to keep going to the place Jaden was going to preschool and therapy. It was the cheapest for the quality of therapy he is receiving. So since January Jaden has started to say a few more words. I should keep a tab on the side of this blog just to keep track of his words. He is doing better at trying to say words and also saying the first syllable or sounds of words.

We have increased his therapy by two more sessions. So he is attending thereapy 4 days a week Tues- Fri at a hour each session, along with 4 days of preschool at the same place for two hours each, and on Wednesdays he has preschool at the school district for an hour and a half. I have to drive to each of these places and back and it takes 25 minutes to drive to each place. I'll let you do the math. I'm sure the car is as tired as I am.

Jaden now can say: hi, no, hey, banana (some of these words don't sound exactly like the word), apple, car, night-night, bye-bye, candy, cookie, tree, see, yeah, shoes, toes, eye, nose.

I'm still waiting for mommy. I'm working hard on that word. For those mothers out there who get frustrated with your little ones be grateful that your kids can call you mommy and probably that they love you because this job is ungratifing and to only hear those words makes it worth it. But if you can't hear those words it is hard to tell if someone really appreciates the endurance and work.

And he can point to : hair, eyes, toes, mouth, belly button, nose, chin, tummy.

But we are still wondering if we are doing enough.

I would love to enroll Jaden into Autism Journeys and keep him in preschool. I've heard great things about this place. But it would cost $2,000 a month. We are already paying $1,200 a month. We have spent all our savings, and all excess income and are calling in all IOUs.

I wish we could get student loans for our autistic kids because if they get all the help they can before age 5-7 they are more likely to be mainstreamed and not have any problems. It is only a couple of years of intense spending for therapy for these kids and then they can be mainstreamed and live a normal life. But if you miss that small window it may cost more money for therapy to make the same difference in those kids' lives in the future.