Aches of Autism

So much change going on ...I need a change

2011-02-24T14:32:00.000-08:00

So lots has happened and I don't want to post it all. Four instructors later a lot of ups and down ( I think more downs) and that is where you'd find me. I have some good instructors now working for me in Jaden's program that I feel confident with where the program is going. Jaden, on the other hand, I'm not confident on where he is going. His behavior has been the most terrifying roller coaster ride I've been on. There are some ups but there are a Heck of a lot of steep downs. Yes, he's almost potty (not poopy) trained, and is reading, and more able to make complete sentences that express good thoughts but.... I say but... He is stimming like never before and he echos physically and verbally so much that I feel like I have a paid mime following me everywhere. He licks things, he smells things, his OCD is off the charts. Every door, drawer, compartment have to be closed; drops of water wiped up; rugs and pictures places straight. Where did this OCD Mime come from?!

His behavior took a bad turn about 2 months ago ( more violent and endless screaming) we think after he ate some Swedish Fish (for potty training), which is full of no, no red dye. Then another diet was suggested and I started it promptly as soon as I could. The Diet is called the GAPS Diet. It is the SCD diet on steroids. I had to make friends with a rancher and a butcher and spend that much more money at whole foods to get it going. So 1/4 of a cow later and a bunch of bone marrow the diet is going full steam. Yes, we have seen improvement in his violent behavior but like I said I'm dealing with this new creature. So I'm going back to the intro diet of GAPS diet to see if that will help with the strange behaviors.

As for school, he got the Okay to attend mainstream Kindergarten but I may have to hire a shadow for him. Which is fine. I didn't want him going to a special ed kindergarten because he is so far ahead of his peers academically that he might tank in a limited environment.

As for Brinn, at first the school district said she didn't qualify for any special services. This made me upset because I could ask Brinn how old she is and she would reply "Old. or Brinn Rogers." Um, I don't think so. So with help from a parent advocate with the school district and a few phone calls later the district head of preschool and kindergarten allowed Brinn further testing. And of course Brinn was allowed into the special ed preschool and get an IEP (Individualized Education Plan). Thank goodness. But she is my super star. Yes, we have work to do but I don't stress about her future as I do for Jaden. Lately, I'm in tears every night worrying about these new strange behaviors and the lack of progress in certain areas (potty training).
Poor Brinn hasn't been getting as much attention as I give to Jaden. It is always last minute that I get my RDI homework done and it is because she learns quickly on her own that she is progressing quickly.

So my schedule basically consists of ABA, RDI, and cooking like they did 100 years ago. I can't use a microwave. Yeah, chew on that. Everything has to be fresh, frozen, free range, pasture-grass fed, and named Bessie.

I do have to say, that it was funny when I bought the cow, I received a picture of the cow. It brought a sick smile to my face as how they thought it might be appealing to see what your cow looked like before it met my friend The Butcher.

I've been doing this for almost two years now and I'm starting to get that burnt out feeling where despair starts to creep in a little more often. I told Jason the perfect break from this would be a long road trip to the coast with music blaring and me screaming/singing to the music at the top of my lungs until I arrive at a sandy beach with warm sun. ...Maybe Someday.

So this is what is going on right now. I just try to make it a day at a time. I'm not going to picture Jaden being 16 and having the same tantrum he had earlier today at the store....that terrifies me. I may have to take up weight training.

Diets, Riots, and not a whole lot of Time

2010-06-27T10:55:00.000-07:00

I started this blog to keep a running log of how Jaden's and Brinn's therapies evolve and the results we see so that family can be updated and so that other parents with autistic kids can see what I'm doing. But when ever I get a good 30 minutes to myself the last thing I want to do is post on my blog. But here is what has happened in the last few months.

...

After we paid our last dues and waited out our last hours in the HBOT I hastily removed the chamber from my parents dinning room and returned it. It is hard to tell if it helped the kids or not because, yes, they did make progress in their speech, communication, and social skills but was it because of the HBOT, time, ABA, RDI, biomedical treatments, B12 shots, or listening therapy. Who knows? but who is willing to leave out any treatment that COULD help. No one wants their kid to be the placebo in any treatment study because what if it does work.

As for instructors, I was having an instructor leave for an internship she wanted to do and about the same time we received a referral from a friend about a girl who worked at Pingree, an autism school, for two years and had to quit because she had two herniated discs because of two different incidences with older autistic kids. She wanted to work with autistic kids but with younger children and one at a time. She was perfect she hit it right off with Jaden and he loved her. But sadly after one month she was house sitting and was walking one of their huge dogs and she blew out her back. So she had to quit. So for a few weeks I was understaffed and had two instructors tell me they needed less hours. So for a couple of weeks I was doing 21 hours with Jaden, 3 hours of meetings, and 5-10 hours of Brinn's therapy and also preschool on top. Remember also I have to make all meals from scratch.

I hired a girl and she told be she wanted the job and was eager to start. But on the first day I was training her Jaden was having a tough day. So promptly the next day she emailed me to tell me she didn't want the job. So I was back to hiring. So I sent out ads, did about 7 interviews, weeded out the flaky and not-so-interested, and hired two applicants I am so far very pleased with. Let me tell you it sounds easier said than done to keep the ABA program going.

Jaden's still potty training. He has good weeks and bad weeks. We've transitioned him to standing and putting Cheerios or fruit loops in the toilet to make it fun. So far he has seem to be amused and has been staying dry. But it is always a daily battle.

We have started Jaden on a sight reading program and will introduce a phonics program shortly, as he has picked up the phonics rules on his own. He can now read over 200 words and acquires 2-4 new words daily. This is amazing to me considering he couldn't talk a year ago.

Jaden is now on a new diet. Yes, this poor kid has been on more diets than the average adult American. He can now have a few more foods but also more have been eliminated from his diet. Even though we were doing the Special Carbohydrate Diet for Jaden his BM were still mushy and fowl smelling (sorry about the details but this is all we talk about in the biomedical Dr. office). So we had blood taken and an allergy test done and sure enough Jaden had allergic tendencies to nuts (almond flour is the staple to the SCD diet), apples, grapes, chicken, eggs, celery, wheat, oats, and many many more items I'm not going to list. So basically everything he was eating was irritating his gut and intestines causing a leaky gut. So we changed his diet (still no sugar, gluten, casein and allergy inducing foods) while giving him aloe juice and chamomile tea, and a bunch of new supplements. His BMs became normal for the first time in months and then we started the antibiotics and the anti fungals. Jaden was a sweet little boy for a few weeks then after two weeks when we were done with the anti fungals his aggression and sensitivity started to return so we are going to have to put him on some natural anti fungals (garlic...).

During all this, the biomedical Dr. I was seeing left the practice and so I am now seeing the Dr. who started the practice. I personally like him better.

So Jaden can now eat potatoes, corn, and rice which has been great. But he has to eat organic and fresh vegetables. Cooking has taken up a major amount of my time and money now too.

Brinn is doing well. We just finished our second RDA with her and boy was it interesting. I thought it went okay (Brinn had some moments). But when we had our review we were basically told that we let the inmates run the prison. So Jason and I will be working on that ...or I will be working on that because Jason has been at work a lot...even on Saturdays. Poor Jason.

Brinn can now count to 10 in three different languages and we are working on having her count to 20 in English, Spanish, and German. She gets all her practice as she is on 'time out'... and she is on 'time out' a lot.

Brinn is very social and at times she seems like a normal neural typical child but she still has some communication skills we are working on. My current homework is to catch her on camera thinking when she has encountered something unexpected, which has been tough. Also, I'm supposed to record some referencing communication which won't be too bad. The third clip I'm suppose to tape is Brinn's response to setting limits in our activities (such as a space limit) and see how she responds. She will most likely respond with a tantrum but we have to just let her tantrum while we still enforce the space limit without any talking. Then if she calms down we then reintroduce our activity. Needless to say the house is not without a lot a screaming.

THE HBOT

2010-03-03T13:57:00.000-08:00

Here is a glimpse of our HBOT adventure.

Trying to make a Mole Hill out of a Mountain

2010-01-31T08:33:00.000-08:00

So every time I have to go see my DAN Dr. I have to take a deep breath, ask him to write everything down that he says to me so I can read it later, and then go into a wide-eyed trance so the Dr. can't see the shock of the next overwhelming task at hand.

After the appointments, I usually get a caffeinated drink and a chocolate bar with some gooey caramel center and then carefully read the prescribed treatments and try and digest what I heard earlier.

Today the chocolate and drink didn't help. I got home and collapse at what was strongly suggested for Jaden and Brinn. If only there were more hours in the day to do all these things...

Brinn may have to go on the antibiotic and anti fungal treatments that Jaden is on and Jaden will have to stay on his anti-fungal for the next 6 months to regulate his "gut". Remember anti-fungals 4 times a day along with pro-biotics 2 times a day all at different times ...along with the usual supplements.

At this appointment Jaden's gut was pretty good-not much bloating. Brinn has diarrhea so that indicated bacteria, yeast, or a viral infection so we have to wait a week and see what happens. But if it is the first two we'll have to do the antibiotics and anti-fungals as mentioned before.

We also went over Brinn's metal lab that was sent to Paris the previous month. Apparently, all we have to do is look into Brinn's eyes to tell what temperature it is with all the mercury that is in her little system. Okay, maybe it isn't that bad but it is high-along with some other toxins that the results showed. So for the next four to five weeks Brinn will be on Enhansa (Enhanced Absorption Curcumin Supplement) that gets increasingly stronger each week to help her detox from all the toxins. She will have to take the stuff two times a day. Just add it to the list.

But on top of all that the Dr. strongly suggested we started HBOT treatments. My first question was ...What?! I had no idea what it was. So the Dr. showed me the chamber they had there and explained what it does. So it logically seems like the next step.

But to explain the cheapest way we can do this is to rent one for two and a half months and each month costs the same as our old mortgage payment. The kids are supposed to get 80-100 hours in the chamber for it have the greatest affect.

Besides using up all our money I'm suppose to put both the kids maybe along with myself in this chamber one hour at a time, two times a day, five days a week...for the next two and a half months. But remember on top of that, supplements and medications 6 times a day, listening therapy 1/2 hour a day for each kid, 6-9 hours of ABA a day for Jaden, 2 hours RDI for Brinn, and I need to find time to make ketchup, bread, spaghetti squash, and prepare gluten and casein free and SCD diet meals.

Oh, and to top off my heaping plate...I will have to start giving Jaden B 12 shots in four weeks. I don't have problems getting shots, but I have never given anyone an injection and I get to start it on my little boy... I'm terrified. I'm sure once I've done it a couple times it will be no big deal but the thought of it is a little intimidating right now.

...and so is everything else.

Hum...If only we didn't have to sleep. Is there enough caffeine in the world?

College students, Drugs & Paris....what an adventure!

2010-01-27T14:54:00.000-08:00

Where to begin...So much has happened but non of it truly interesting or noteworthy...it is only blog worthy.

So I finished retraining my instructors the first week of December and installed a one-way mirror (which has been a blessing).

Luckily, my instructor with sleeping problems had to leave to do a study abroad and I was again hiring. Within five days I received 31 resumes from a nearby University. I easily found my top 3 and hired a girl who has done 2 years of ABA, worked at Spectrum (A charter school for autistic kids in North Salt Lake), and is currently running a private program for another client (consisting of floor play and RDI), as she has two consultant friends she keeps in contact with who help her. I was thrilled that I didn't have to train her and she is amazing!!! I asked her if she has had previous experience with big (okay I mean violent) tantrums. As soon as she told me that she had her wrist sprained by a boy she worked with, I hired her. That was experience enough for Jaden.

In weeding out the resumes I had a couple of chuckles. One freshman professed to have an intense interest in helping autistic children because they were angels here on earth. And someone else in their cover page noted that they thought autistic kids were sweet spirited. I laughed because they obviously don't have any experience with (most) autistic children (or an autistic child like Jaden). I'm not saying that Jaden isn't sweet or that he isn't one of God's angels here on earth. Deep down I believe those things. But when you are making an autistic boy do something that he blatantly doesn't want to do for 6-9 hours a day that angel can turn into a demon (but I still love him). These applicants would be caught off guard.

I interviewed 7 of the top resumes I got. I wanted to make sure this person wouldn't be burned out in two months. I was surprised of the lack of knowledge that these applicants professed to have. One said she first got an interest in special education because she had come across a few mentally handicapped people while living away from home for two years. She then told me there was one young girl who must not of had autism because she was always throwing tantrums.....Hum.

One told me that she thought autistic kids were the easiest to watch because they would just sit for hours playing with their obsessed toy. So I asked her, "What do you think those kids would do if you pulled them away from their toys and made them do something they didn't want to do for 6-9 hours a day?" I think I made her realize a bit of what she might have faced...she was speechless.

Doing this interview process there is one thing that I loved while interviewing. I loved when someone had questions. I usually only got questions from people who had experience and when they did ask their questions it always professed their true interest in the job. Money=yes, $ is important today but they may get burned out. Questions about the ABA Program=they seem to want to know more about what we are doing with this program and have some background knowledge or did some research.

So in the hiring process we lucked out this time.

Just before Christmas we went back to our DAN Dr. and we learned that we had to do another round of antibiotics and anti fungals. Jaden's belly was still bloated. Where is the yeast and dairy coming from? Some how he got some "No No" foods (sugar, grains, dairy, yeast) in his system- It might have been from breathing. So now we are back with taking the antibiotics three times a day for a week and this time we are doing anti fungals four times a day along with probiotics two times a day and they can't be taken the same time as the anti fungal, and we have to do this for 30 days. So six times a day for 30 days poor Jaden is taking supplements and meds. Poor boy.

Brinn had to have another urine sample taken for a metal lab. But this sample was shipped off to Paris to by analysed. Boy, I wished I could have accompanied the pee. Who would have known that the French were experts in wee wee?

So, I finally received Brinn's lab results back by email (which was nice) but they forgot to translate-from Doogie Howser M.D. to Jenny Rogers G.E.D. It was very frustrating. So I guess I'll have to pay my Dr. translator a visit to see what is going on and what potions to further give my little Brinn.

ABA has been moving pretty smoothly along except for one problem...Mr. Hyde (or Mr. Jayde). Jaden has been very good with hitting...he has a very good aim. We still haven't gotten Jaden's outbursts under control (hitting, kicking, pulling hair, throwing toys and furniture) they have gotten a little worst as his upper body strength has increased. He went from throwing chairs to tables. Jaden is actually a very sweet little boy who tells you he loves you "miss much" and freely gives hugs and kisses...after his apology (he does it other times too :) ) But when he gets frustrated or disappointed he turns from cute, sweet, Dr. Jaden to Mr. Jayde. So our consultant will be doing a couple sessions with him after he watches a video I'll put together of several sessions where he has been awful.

We'll figure it out....I hope.

I love my babies but I can look no further than today...that is how I survive.

...Oh, and chocolate

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

2009-11-27T08:48:00.000-08:00

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

2009-08-13T20:03:00.001-07:00

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

2009-08-07T12:57:00.001-07:00

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

2009-07-29T09:30:00.000-07:00

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

2009-07-20T16:47:00.000-07:00

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

2009-07-13T17:50:00.000-07:00

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

2009-07-02T19:42:00.000-07:00

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

2009-06-02T18:46:00.000-07:00

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.

2009-05-30T18:42:00.000-07:00

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?

2009-05-27T21:41:00.000-07:00

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?

2009-05-26T12:09:00.001-07:00

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

2009-05-23T21:21:00.001-07:00

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

2009-04-30T19:35:00.000-07:00

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!!!

2009-04-27T11:18:00.000-07:00

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

2009-04-22T11:07:00.000-07:00

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?!

2009-04-09T07:23:00.000-07:00

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

2009-04-03T21:03:00.000-07:00

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

2009-03-16T21:17:00.001-07:00

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?!

2009-03-16T21:01:00.000-07:00

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

2009-03-16T20:32:00.000-07:00

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.

Consultation Report

2008-12-15T12:18:00.000-08:00

So we went to our free consultation at the autism clinic I mentioned earlier. They start the whole process by telling you how great they are and how much your child needs them. Both statements are very true. The clinic was amazing in what they offered and, yes, your autistic child does need the therapy and training they provide. But then they tell you you need to sell the farm in order to help your child. How much is your child worth to you? Yes my son is worth the farm but I can't sacrifice my child's well being for therapy.

They offered three packages: A package with 2 hours of therapy a week with other services, a package with 4 hours of therapy a week with the same services, and a package with 6 hours.
They recommended the 4 hour package for Jaden. But that package costs $24,000. Where was I suppose to get money like that being middle class. They also suggested seeing their speech pathologist which costs $150/hour once a week.

The other services were nice perks for the rich who could afford it but I just wanted the thereapy not the two monthly meetings with all the staff, the 24 hour thereapy calling service, and video review. They were nice services but I didn't want to pay $24,000 for only 4 hours of therapy a week.

We'll have to get creative in finding the help we need.

Ability to pay the price

2008-12-11T16:07:00.001-08:00

Nothing is more frustrating than to know there is something out there that can help or even heal your child but you can't afford to buy the treatment. It really gives you appreciation for science and teachers and what they have achieved but also the importance of using your money wisely and the purpose of this life.

I love that there are people out there who knew and were interested in the study and the psychology of learning disabilities. They have an understanding of how these children see their world and their reaction to it.

Money is the energy source of getting things done in this world...either for good or for awesome. Whatever you choose for your motivation is inevitably what motivates everything you do. Whether your motivation is your family, your fame, your image, your selfishness, your love for humanity, love for the earth, or your pride it is all up to you to decide. Autism is so close to my heart right now that any help we can afford for Jaden we just might do.

Jason and I use to live off of $20 a week in New York City his first year of law school. I would walk everywhere rather than spending the $2 to go one-way to anywhere. We ate the bare minimum and going out to dinner for fun was going to 34th St. and eating at Wendy's. That was an $14 excursion with food and subway for both of us.

Now I find myself at the stores compairing the price and the necessity of the item to the price and necessity of Jaden's therapy. My indulgences always loose. I always hear my voice echo in my head, "Sorry, Jaden, you can't have therapy thay may help you learn today because I need another pair of shoes and a blouse which I already have a closet full of."

But we still can't afford the best teatment and schools for autistic children which would definitely help Jaden. That is where despair creeps in.

Our Travels So Far

2008-12-11T15:19:00.000-08:00

So after I compiled the list of Jaden's symptoms I took this list to the pediatrician and he agreed that Jaden was autistic but we still needed him to be officially diagnosed. My pediatrician sent me on an unintentional wild goose chase as the numbers he gave me only worked with children with Medicaid and a research clinic that only worked with children 3 and older. Also it was just a research clinic and not a practical clinic so we couldn't get a diagnosis. So I went to see my sister's pediatrician since this doctor had an autistic son of her own and she knew the medical field of autism well. She suggested I see the state health department to get the diagnosis. And of course everything is out-of-pocket since our health insurance doesn't cover autism.

Jason bought a book called "Act Early Against Autism". The best advice the book gave was in the title. The lady who wrote the book is very bitter and only deepens the despair. A definite "do not read"!

Jason also found a preschool in the area (20 minute drive) that works with autistic children. The teacher there is amazing with these kids and they all love him. The ratio is 5 kids per teacher and they have them on a strict routine and the teachers work with the kids individualy for a period of time to focus on their particular need.

If you're interested, the preschool is called Kidsworld Preschool and the price is a little steep. It's not nearly as expensive as Pingree School of Autism ($26,000 tuition a year!) which all parents with autistic kids dream of getting their kids into. This preschool is $360 for four-days-a-week of 2 hours a day. The teacher also provides private sessions of therapy for the kids. He does charge $50 an hour which is very reasonable for those of you who aren't on Medicaid or are filthy rich. If you're filthy rich put your kids in the Pingree School of Autism because that is where you can get your doctors, researchers, special ed teachers, and therapists together to help your child with a ratio of one teacher for two kids. But the thing is someone has to pay for all the help, and insurance companies and the state won't pay so parents have to.

As I was waiting for the state health department to call me back to make an appointment with a behavioral pediatrician, my father told me about a new clinic that opened called Autisitic Journeys. Since they are just barely opening they are having free consultations and diagnosis. I immediately called and got an appointment. This clinic teaches the child's family and friends therapies and treatments so they can get the help they need at home. Just what I was looking for! I wanted to learn what the therapists knew so I could help Jaden. This clinic also privides thereapy for the kids and works with the schools that these children will and do attend.

I will have to update later about my consultation.

Something is wrong

2008-12-10T08:07:00.000-08:00

As a baby Jaden was very high maintenance. He was very colicky and the suggestions were gripe water, different bottles, and massages. None worked. I just looked forward to the few months away when he would grow out of it. I couldn't go anywhere. He always had a screaming fit and I always felt like he was a ticking time bomb. I was desperate to get any time with peace and quite. Jason was always gone. After starting his job at the sweat-shop law firm he left at 6:00 AM and came home anytime from 10:00 PM to 2:00 AM.

I remember at Jaden's 5 month check up my doctor commented on how this is the age that babies are so much fun. I remember thinking "What is she talking about?"

Jaden was a screamer and still is but the concern set in at about 11 months when comparing him to other babies his age he wasn't saying any words, waving, or responding to his name when I called it. He seemed not to want to pay attention. I also wondered if 11-month-olds knew the concept of ignoring.

My doctor in New York was concerned. I remember lying to him saying he knew two words... but he didn't. I lied because I didn't want to believe something was wrong with Jaden. Denial is a real thing. Even in denial I shed tears out a frustration and despair as I worked with Jaden to get his attention and to say any word or sound I made. Jaden did say a couple words around 12 to 18 months but then he would never say them again. I thought I'd give him some time. He is just a late bloomer.

We moved to Utah to be near family and also to improve Jason's work hours. It was a smart move hindsight to what was in our near future. At 22 months I went to a pediatrician here and told him my concerns. He said Jaden was just choosing to ignore and was being a two-year-old. I was relieved. It gave me hope that he was okay. But I still had a feeling something was wrong and that is what kept me asking questions. So I got his hearing checked and learned he could hear just fine. With those results I went to the school district to get him speech therapy.

A couple months went by and I felt there was no improvement with his speech and his behavior was getting worse. The screaming had intensified and his tantrums turned in to destructive stampedes around the house. Chairs, toys, dishes, food, and any object he could get a hold of were thrown or tipped over. Even his little sister, Brinn, was the object to express his anger and frustration on. I was deeply concerned, frustrated, and desperate for any help for this behavior.

I was talking to my sister Kristie. Her oldest boy has autism too along with other health complications because of a stressful delivery. She told me Jaden sounds like another autistic boy she knew and that I should get him tested.

I still didn't want to believe something could be wrong. I wanted to hold onto that hope that this was something he would grow out of, but I had a feeling that there was something wrong no matter what I wanted to believe.

So I did my own research on the internet about autism and found a list of symptoms that fit Jaden's description. They are as follows:

-He doesn't have imaginative play. He only organizes and stacks his toys.

-He is very attached to a toy. His stuffed lion to be exact.

-It is hard to get eye contact with him. At times he refuses to look at you while other times he gives it freely.

-He doesn't like strangers and has a melt down when he is surrounded by people he doesn't know. Church is a joke to go to. Our weekly seats are in the foyer.

-He is very huggy and loves to be touched. I didn't think this was a symptom but it is along with not wanting to be touched. I guess moderation is the key for a normal diagnosis.

-He doesn't respond to simple commands. It seems like he is ignoring me.

-At times he squeezes hard when he gives hugs or touches things with intensity. This is because of his sensory issues with touch. His sense of touch may not be as strong as normal kids or it may be stronger.

-Also tantrums, frustration, anger, and screaming are some symptoms.

There are many symptoms for autism. It is said that if you meet one autistic person you have only met one autistic person. That is why autism is a spectrum disorder. There is a wide spectrum they can fall on and no one person is the same.

So after doing this checklist I knew this was the monster I was facing. Both Jason and I cried for the loss of our son's normal future. For the kids who will refuse to play with him. For the family we hoped he would have in the future. And for all the opportunities that we dreamed and hoped for him. But at the same time I was relieved to know what the problem was and that I knew where to start to try and help Jaden.