Christmas is Coming!

Photo from http://sd.keepcalm-o-matic.co.uk/

Well, this post has been a LONG time in coming!!!  For the last two months I have not been feeling well.  I have been losing my hair for the last two years.  I have been having fatigue issues on and off for that long too.  I have noticed other changes in the body including weight gain no matter it seems what I do.  In the last two months things have really gone down hill with lots of eczema issues and not gastric issues.  I think I may have irritable bowl problems or celiac disease.  I have an appointment in about a month with a gastro. doctor in about a month.  I am hoping to find the issues then.  My autoimmune system seems to be in overdrive lately and I am not sure why.  I had a high reactive c protein result about two years ago and that got me worried.  Since then I seem to have systemic inflammation.  I think it may be from the poorly done umbilical hernia repair.  I have an appointment in January to see a hernia repair specialist too.

After not eating gluten for the last two weeks and cutting out carbonated beverages with caffeine I feel better but still not well.  I am not sure if it is because I have irritable bowl disease or if there is celiac problems and not my gut is so damaged that it is going to take a while to fix.  I have to see if I can get my health issues straightened out. At this point I just want to feel better and I will do what I need to in order for that to happen. 

Life at home, since we moved, is tough.  With the fall out from Bill and Bailey (mostly Bill in this instance) the house is SO much quieter with them gone.  No constant running someone to the urgent care, hospital, or having emergency personnel show up at my house (Firemen or EMTs).  No medical emergencies of any sort.  I have to say I like it!  My oldest son came to my house about a month or so ago.  With the addition of Jerrin to the house it has caused some problems but that is because he is not used to how I live and how to behave in the house.  He has been living with his girlfriend and her mother for awhile and I think the manners I taught him and other import life lessons went out the window.  I am glad to report though he is coming a long nicely and making progress in being an adult.  I am thrilled!  He is a good kid, a good son, but he needs to grow up and face what life has to offer.

Living with John full-time has been rough.  I think we have reached a compromise for now.  One of our biggest problems is we want to share a bed at night but he snores so loudly I can't sleep.  Or he sleeps lightly but snores little to none.  The problem is when he wakes in the morning after a night like that I slept pretty well but he did not.  We now have a bed in the living room.  It works well for extra seating, especially for the children, and John can have a bed where his snoring will not bother anyone.  We are currently waiting for his insurance benefits to run out and I can put him on my insurance.  Hopefully then we will be able to get him to a doctor and see if there is something that can be done with his snoring.  We want to share a room but on the other hand we both like to sleep.  That makes life tough!  LOL

Halloween was NOT fun at ALL.  I was SO pissed at the time!  It was the last day that we had to get out of the Gilbert house.  I had to schedule carpet cleaners there for that day.  I did not have the money to do it until then.  With the fall out with Bill and Bailey they did not do repairs to their room and Bailey had bleached the carpet outside the bathroom.  So I had to take care of that work too.  So as the carpet cleaners were there trying to clean the carpet (John, the little kids, Maddi and Dimitri were there...I was at work) someone from the rental company, Time2Rent, showed up unannounced.  He decided to do the home inspection right then.  My husband was texting me.  They guy was walking all over the freshly cleaned carpet and the Sears carpet cleaners told my husband that the warranty for the carpet was now voided due the guy doing the inspection.  He was literally walking ALL over the wet carpet!  He pointed stuff out to my husband saying we had to fix it including all the nail holes in the wall.  When John texted me this I was livid because they did not repair those before I moved in.  It is my fault though because I never filled in the move in sheet.  So it is my word against theirs.  The guy from the property rental company pointed out several issues and said we had to take care of them to get the deposit back.  We complained but said okay.  So John went back and took paint off the wall to get a color match.  Initially it was wrong so we had to go back again to get another shade.  John spackled and painted the walls while Maddi and Dimitri cleaned the house in general.  It was a MAJOR undertaking!  We got everything squared away.  I was pissed on Halloween because I go to look at the house in the evening and the paint color on the wall was a disaster (that was the first color try). I was so ticked I almost did not take the children trick-or-treating.  In the end the kids were crying wanting to go out so I stopped, alone with them, and took them around for a bit.  When I got home John was annoyed with me, for good reason, but I convinced him, Maddi and Dimiti to take the children out again for Halloween.  They did and all had a nice time.  The kids were thrilled going trick-or-treating.  I am glad they had fun in the end.

Thanksgiving was nice at the house.  We are VERY thin at the house.  We have NO money and I am having a hard time paying all the bills.  That being said, we got the Christmas money from my in-laws.  It was money for us to buy our family Christmas gifts but we had to spend the money on food.  That was how it had to be.  We were able to have a nice Thanksgiving.  By this time I had figured out I have an issue with maybe gluten and caffeine and/or carbonated drinks.  I had been working on cutting these things from my diet.  John made a gluten free Thanksgiving stuffing for me.  It was AMAZING!  I loved every bit of it!  Thanksgiving was nice and mostly quiet.

Yesterday we celebrated the children's 6th birthday!  Where did the time go?  Since we did not have much in money get got the children a couple of small gifts.  We got two small gifts each.  I got each of the children an insulated cup with a lid and straw.  I have one and I notice they are ALL the time wanting to drink from my cup so I got them each their own cup.  The one small problem we had is that they cup we got for Margaret came without the lid and straw.  So I was sad she did not get her cup but her actual gift, a superhero cape, was a HUGE hit!  We also got Joseph a superhero cape.  James's second gift was a large checkers set.  He has really gotten into playing checkers with my husband on his phone.  He is a HORRIBLE loser but John plays with him anyways...lol.

In a mere two weeks is Christmas.  We are out of money and James has been wishing hard for a telescope, drums and a Kindle.  The only thing Margaret has mentioned wanting is a Furby.  I have no idea why but she is fascinated with Furby but basically Joseph and Margaret are excited to open presents.  They can't wait.  My only problem is that we have no money to go Christmas shopping.  This year has been one of the worst for their birthday and Christmas since I have no money to go shopping for them.  I feel bad.  I wanted to get everyone new bikes.  They LOVE their bikes but James has worn his out and Margaret needs a bigger bike.  Joseph has a scooter but I found a lightweight balance bike that I think would work for him.  I just need to find a way to buy it.  It may be a VERY thin Christmas this year.  If it is we will try and make it up to the children when we get out income tax refund.  Maybe I can say Santa got lost?  I don't know.  I will think of something.  I am good at that....lol. 

If you would like to help with an item on their Christmas list you can find items and or ideas on the Kids Christmas List on Amazon...  http://amzn.com/w/18Z2ID38EGU5H
Many of the items are similar items with different price points.  I have been having fun "window" shopping for them because that is basically all I can afford to do.  : )

As we head off into Christmas I am happy that I have a pretty loving and decently functioning family. We might be as poor as dirt but we enjoy each other pretty well!  It has been great to have Maddi and Dimitri join the family along with my oldest son.  John and I are looking forward in facing the future and what life might bring.  We know life will get better sooner than later.  Our current struggle for money has to do with so many people in the house and I was the only one working for awhile.  Jerrin was able to get a small, part-time job at FedEx for the holidays while Maddi got a job at Subway and recently got a second job at Circle K.  That girl has an amazing work ethic.  Her parent should be proud!  Dimitri helps a LOT around the house and with the children.  John is busy with the children doing school work and getting their doctor appointment taken care of while I work.  Life is good, eveyone has a place in my crowded house...
  

Happy 6th Birthday to my Surviving Quadruplets!

                            Happy Birthday!

When you think about how far the children have come they are AMAZING!  You can see their birth information at the About Us tab. We had a nice day overall.  John made an amazing carrot cake for their birthday!  It is a gluten free Hello Kitty carrot cake.  Margaret requested the cake and the boys did not mind. They all LOVE carrot cake!

The night before the children's birthday we did a ninja move and sneaked into their rooms and put up these large wall hangings to surprise them when they woke up.  It worked!  They were SO excited when they woke up!

 

 Here are the children blowing out their candle...

 

Here are some other pictures of my cuties...

Joseph watching daddy fixing the carrot cake!

 

Halloween Is Coming!

Halloween 2013 - Kids having fun making up their own poses!  LOL

All sorts of changes have been going on around here.  Bill and Bailey left by the end of September.  We had a falling out, sadly, but I think much of that was due to Bill really but it is what it is...

Today is the last day in my house in Gilbert.  I really liked this house in a  lot of ways.  I LOVED the neighborhood.  I LOVED living across from the high school.  It has been fun sitting outside on Friday nights listening to the crowds as they cheered on the football players.  I LOVED listening to the band practice and then play their songs during the week.  I will miss all these things from my house in Gilbert.  Going to the new house in Phoenix will be a real adventure.  The neighborhood is not as nice but seems okay.  The biggest thing I LOVE about the new house is the pool.  I HATE that we are moving there at a time when we cannot use the pool.  We only get to stare at it until the weather warms up again.  I saw some plans on building your own passive solar heater for a pool (see video on below).  What a great idea!  If I can afford to do it I would love to try and make our own heater.  I would LOVE to try it!  It might let us use our pool in late April or early May. 

Last weekend my son Jerrin, whom I had not really talked to for the last three years (long story there), has not come to live with me.  I did not see that one coming!!!   He came at a good time though.  He has been helping John, Maddi and Dimitri move while I have been at work.  They have all been working their tales off!  I will have to do something special for them!

Got to go.  Though I am at home today I am telecommuting.  I have several CEs to review.  Have a good weekend everyone!

We're Moving and a Bit of Pastoral Beauty!

Photo Credit: LeraBlog.org

When I first chose the house in Gilbert I LOVED it.  Gilbert is known for their good schools and particularly for having a great program for special needs children.  It was a great reason for me to commute about a hour each way to and from work every day.  With my lease ending for the house in Gilbert John and I started to look around for another place.  One closer to my work.  Working on downtown Phoenix it is tough to find a house that is large enough for us to live in yet will stay within my housing budget.  We were able to find a house in the Glendale area that is close to my work, is about the same size of the house I am currently in AND has a private pool in the backyard!  We are excited to get the house! Now we just have to make sure we have all the money we need to execute the move!

Another item of interest this week relates to our new house.  We are hoping (and planning) on starting a raised bed vegetable and fruit garden.  The items we harvest from our own yard will be a higher quality than we could get from a grocery store, it would be cheaper and most importantly we will know what has been added to the soil (So no GMO or pesticides).  In an ad from Chipotle for their app game called The Scarecrow is a wonderful video in a classic satirical, pastoral style. 

Where the scarecrows, who are often the protectors of the crops, are being forced to work for crows.  The crows run major corporations that say they are producing natural foods but as you follow the scarecrow character around you find out this is FAR from the truth!  At the end of the day the scarecrow heads home past brown crop fields with large mechanical crows vomiting on them (I am sure they are suppose to be spaying the fields).  Once the scarecrow makes it home his barn is a bastion of color and beauty because of this fresh garden.  He stops and picks some of his harvest and chops it up and cooks it.  Next we need the scarecrow has opened a shop in an alleyway between two major corporations.  A crow comes by the check things out but the scarecrow shoos the crow away.  As the fajitas or tacos are placed out a boy looks around and examines the REAL food.  It really makes you think.  If you have heard of Monsanto and the things they have been doing then you have done your homework.  Otherwise you might want to learn where your food is coming from and why it could be bad for you...even that health food on your plate!

It's My Very Un-Birthday!

Hello all!  Sorry I have been running behind but life happens fast and often I don't feel as though I have time to write.  Heck, for the last four Saturdays I have tried to leave the house but after eating breakfast I would start to feel ill.  I am worried it is the diabetes or something new like gluten sensitivity issues or worse (well, for me) lactose issues.  Sigh, getting older is annoying!  LOL

My birthday cake!  Didn't hubby do an AMAZING job???

Today I am going to go backwards.  Since the most recent exciting thing to happen was my birthday!  John had gotten me several nice presents for my birthday.  It was SUPER sweet of him!  For the day of my birthday (Sept. 4) I went to work while he prepared one of my FAVORITE meals!  As a child I remember going to a place called Michael's on Sundays after church. There my family would order the lamb.  I would get lamb with mint jelly, mashed potatoes, broccoli souffle, and yeast rolls.  It was delicious!  My parents and I really enjoy lamb but my husband does not like it nor my older children.  It had been awhile since I last has lamb and I missed it.  So John decided he would recreate that meal for me.  It was such a sweet and loving gesture!  He got the lamb.  Found lamb sirloins. The biggest problem he had was finding mint jelly.  He had to go to four grocery stores (with the last stop being a specialty store) before he found it. He got Yukon gold potatoes to make mashed potatoes. He was willing to try and make broccoli souffle but I told him not to bother.  If he could make me broccoli and rice casserole that would be just as good and less temperamental to make.  He agreed.  So when I got home he served an appetizer of a portbella mushroom stuffed with crab and shrimp along with a homemade sauce.  It was wonderful!  Then he served the lamb, mint jelly, garlic mashed potatoes, broccoli and rice casserole topped with fried onions and Sister Schubert rolls!  OMG, I was worried about the gluten thing but on the other hand I told John I was going to eat it and get sick if I had to!  YUM!!!  For dessert John made from SCRATCH carrot cake! It looked great and tasted even better!!!  It was a wonderful day overall.  What a great birthday!  Thank you honey for such a wonderful dinner!!!

Today I got a late start because I needed to take John to Deer Valley (about 30 miles away from out home)

This is how I typically find Margaret nowadays...

to get his car.  He drove out that way to take the children to a free gymnastics class.  Margaret is ALL the time hanging upside down.  It is a sensory thing I would imagine.  She is VERY sensory seeking and after talking to the psychologist after all the testing that

Margaret in gymnastics class. The instructor is talking to her.

makes a LOT of sense!  I will talk more about that later. Anyways, Margaret is all the time running around in a leotard and tutus saying she is Hello Kitty Disney gymnastics princess....ROFL!  John thought the gymnastics class would be a good idea and he wanted to see how Joseph would do in the class.  I was interested too.  I love anything that can help the kids and I wanted to know if Joseph could handle the busy pace of the class.  So John went.  The kids had a BLAST!  James had fun, Margaret was in her element.  She was having a hard time concentrating but the instructor would show her again what she needed to do and Margaret would mimic.  She blended right in and had a great time.  Poor Joseph had a great time too but the soft squishy gym mats made it super hard for him to walk.  He also has strength issues in doing some of the things he was asked to do. The instructor for Margaret said she was pretty naturally gifted.  Well she is super skinny, extra flexible, small in stature and fearless.  All those traits (a "gift" of her brain damage and/or autism) do make her naturally talented in gymnastics.  Margaret really could use the social interaction, following instructions, structure of class and exercise gymnastics would give her.  James could use gymnastics for strength, flexibility, exercise, following instructions, and social interaction. We were advised that Joseph would need to join the Tumble Bugs (three year old class) and we are okay with that.  Mentally he is like a three year old.  He could use the instruction, interaction and strength building gymnastics could provide.  The bad news?  To put all three in a class it would be $225 every six weeks! Expensive but worth it.  We just need to figure out how to pay for it.

I have been house hunting.  I wanted to find a home closer to my work.  I have been commuting 25 miles each way which takes me 45 minutes to an hour.  So I drive about 50 miles a day and spend at least an hour and a half commuting for the last year.  It has been tough.  Especially when Bailey was watching the children because I had to worry about how I was going to get home quickly if something happened. With John now watching the children at least that stress has been relieved but the drive is killing me.  So I have been looking for a house close to my work.  Keep in mind I work in what is called the Capitol Complex.  I can see the state capitol building from my work.  It is NOT a nice part of town...in the heart of downtown.  I did manage to find a house that is three bedrooms, two baths, nice sized house WITH a gated, private pool (pool service is included) for $870 a month.  It is a great deal and the pool would help all of us exercise.  I am looking forward to the move but it has been really difficult to get through the approval process and we will have to pay rent on both houses for October.  That is stretching expenses SUPER tight!  The time and gas I will save will make the move worth it PLUS the pool.  I can't wait and the children feel the same way!

To pick up from the last post (I know, it was SO long ago!)...What the psychologist said about the children...

James:  James is very interesting.  John and I thought James's IQ would be higher than he tested but he tested with an overall IQ of 86.  Barely in the "normal" range.  Verbal IQ was only 93 but General Language IQ was 110 (high end "normal").  James scored very high in visual memory and screening memory.  He scored in the average range for verbal memory and recognition.  James pretty much scored average to high on verbal things.  Again, not a huge surprise since he taught himself how to read at two and could text by three.  James did have a lot of problems in an area called executive function.  This area deals with planning, organization, memorization and connecting past event and applying them to future events. Again, when John and I heard this we cannot say we are surprised.  One interesting and a bit shocking detail...James was given a set of blocks with geometric shapes and a picture for him to match (something similar to the link).  He would try the blocks to make the shape and when he was wrong the psychologist would tell him to try again.  He could not or would not be able to make something different!  The psychologist said his way of thinking was very linear and he has a hard time thinking about a problem in a different way!  Very interesting!  The psychologist gave James some auditory tests to see how well he could listen to instructions and follow them (both immediately and delayed).  James scored at level or above level!  We were all shocked by this including the psychologist!    James was given a test to check his visual perception and motor coordination.  He was on par with visual perception but his (fine) motor coordination was horrible!  He scored at 3 year and 3 months.  The psychologist said James is often in a hurry and his fine motor skills are very poor.  She said to work with him on handwriting but not to ever expect his handwriting to be good and to get him to learn keyboarding instead. James was shown to have some sensory issues including fine motor (made sense), inattentive, emotionally reactive, auditory processing and having a hard time controlling auditory input.  All of that made sense to John and myself considering James's issues.  James did well on academic testing.  The following scores are grade equivalents...Brief reading, 2.3; Basic Reading Skills, 3.0 (this is as high as this test can score); Academic Skills, 1.4 (Mom did a good job unschooling him so far!  :)  ).  For Letter-Word Identification, 3.0 (again, as high as the test can score); Calculation, K.6; Spelling, K.6; Passage Comprehension, 1.5; Word Attack (saying words, including nonsense words), 3.0 (topped out on test); and picture vocabulary, 1.0.  Very impressive overall and especially considering his learning disabilities!   Finally with James scoring high in Hyeractivity, Aggression and Attention Problems the psychologist said James has some sort of ADHD and she is going to recommend we try medication.  I am not thrilled about that but I will think about it.  James's diagnosis will be autism (previously diagnosed) with ADHD.  The psychologist believes James's biggest issue at the moment is ADHD and not his autism issues. Interesting....

Margaret:  The psychologist said she was glad she got to see all the children together and watch how they interact and then got to see Margaret alone.  She said she would not have been away of how much echolalia Margaret really does in a typical conversation.  Margaret has both immediate and delayed echolalia.  Again, this is no surprise.  What is interesting is that she can do the echolalia so that the general meaning is there.  Not common for most people with echolalia.  It is what helps Margaret to blend in with others though.  Good trait to have!  Margaret's general IQ was 76 with verbal IQ of 75, and general language IQ of 89 (interesting).  Margaret got the block design.  She was able to quickly complete it and had no problem unlike James.  The psychologist said Margaret has MAJOR speech issues!  Major expressive (no surprise) and receptive (this is a surprise).  The block test shows that she is smart, thinks and can reason for herself.  She just has a REALLY hard time talking and expressing herself.  Margaret was shown to have EXCEPTIONAL memory skills.  This makes sense since she can watch a 30 minute TV show and manage to re-enact it DAYS later!  Margaret, like James, has good visual perception but poor motor coordination skills.  Margaret has a slew (word by the psychologist) of sensory issues.  Including Auditory, Visual, Vestibular, Touch, and Multisensory issues with possible oral sensory issues also.  Overall, I thought Margaret did really well on academic skills.  The follow are grade equivalent again...Brief Reading, 1.6; Basic Reading Skills, 1.9; Academic Skills, K.8; Letter-Word Identification, 1.9 (The girl can label an item!); Calculation, K.8 (who knew she is better than James!); Spelling,
Joseph:  He stumps everyone!  The psychologist did not know what to make of him either.  That is both what is fun and frustrating about Joseph.  The psychologist agrees with me that something is wrong with him.  She is not sure what and recommended he see a neurologist she knew that works downstairs from her.  I will have to tell you more about that later.  Joseph's full scale IQ is 62.  That is one standard deviation below where he should be so he is considered mildly intellectually delayed.  His verbal IQ is 61 and general language IQ is 78.  Overall Joseph did poorly in language skills.  In the sensory profile Joseph was OFF THE CHARTS!   He scored a definite difference in ALL categories except emotionally reactive where he scored a probable difference.  The psychologist said he has MAJOR sensory issues and would diagnosis him with Sensory Processing Disorder (SPD) but since it did not make it into the new DSM manual she cannot do that.  Joseph scored low in ALL areas of the Vineland Adaptive Behavior Scale.  That is about the extent of the testing she did for Joseph and checked to see if he would qualify as autistic.  This was something the Melmed Center wanted tested.  The psychologist determined Joseph does not really meet the criteria for autistic.  I have to say I agree with that.  She said the only thing that is appropriate to diagnose him with is being mildly intellectually delayed. 

Tomorrow Will Be Revealing!

Tomorrow we will be going to get the test results from all the psychological testing from Dr. Blackham concerning Joseph.  In the meantime James went in and had his assessments completed.  We have appointments scheduled for Margaret. 

Today all the children went to visit Dr. Laks.  She was recommended to us because she is used to handling complex medical cases.  John took all the children to the appointment and LOVED the doctor.  She is willing to help work with us and coordinate care.  Thank goodness! 

This is just a short post but tomorrow will be the test results. Can't wait!

Joseph In The Spot Light!

My Sweet, And Apparently, Complex Boy!

So I am taking a moment to write on my lunch break. I have all sort of interesting news and it has been backlogging.

Work is going well. I really do enjoy my job but I have found it leaves me feeling rather stressed. I am going to see what I can do to work on the stress and anxiety I feel (the anxiety keeps me from sleeping).

Some news bits that I think are important...

The first is the ruling from Doug C. vs Hawaii (12-15079). This is a great victory for parents with special needs children! This case ruled changed several important issues. One, A school does NOT have to hold an IEP meeting before the annual review deadline IF a date for the parent to attend the meeting cannot be arranged! Second, if there are scheduling conflicts in holding an IEP meeting the priority for scheduling is to the PARENT! Not the school! Third, the school cannot hold an IEP meeting before the annual deadline IF the parent has expressed interest in attending. Also the school cannot "make-up" the meeting with the parent by holding another IEP meeting within 30 days of the annual meeting. Finally, there are a few other issues regarding Due Process but hopefully no one will have to make it that far with the school district! You can read more from Wright's Law (click here!)

A great article on a child born with an inborn error of vitamin B12 that was detected (JUST BARELY) by newborn screening! This is why it is important to push states to have the most comprehensive screening for newborns available! This article is found in the American Academy of Pediatrics (March 13, 2013). To read the article by Dr. Christine Armour click here!

The blog, A Day In Your Shoes, posted a printable list of Specifically Designed Instruction (SDI) that you can take to your next IEP meeting. Here are 500 ideas that can help you tailor the instruction in school to help fit your child's needs. Thank you for the great ideas! To see the list click here!

Giving a shout out to Tilty Cups. I love these things! They are a wonderful cup that helps to teach children how to drink out of a cup AND the design of the cup is simple making it easy to clean. I have been using Tilty Cups for my children since they were two! To see their website click here!

Since the interview with ACHSSSC (or whatever they are called in AZ) on June 24th I still have herd nothing back. This was after I was told I would hear something in two weeks. Sigh! I wish medical people would actually call me back like they say they will!

Joseph went to the Melmed Center on July 2. John and I took him back and talked with another developmental pediatrician there. I have been seeking help to try and figure out what is wrong with Joseph. The specialists keep telling me it is because Joseph is premature and I think they are full of crap! Even in talking to the developmentally pediatrician she told me the SAME THING! Said I was not wanting to hear the truth (okay, that is my wording but that was HER meaning)! For SO long I have felt like I have been waging a one person battle to have the specialists recognize something is wrong with him and for SOMEONE to take an interest and DIAGNOSE him! John and I left that day with the expectation to receive a letter outlining the tests the developmental pediatrician would like to run on Joseph. The doctor from the Melmed Center did agree with me that there were some things that had not been tried such as examining him for mitochondrial disease, metabolic issues and cerebral folate deficiency. She thought it would not hurt to look at these last few things but I had to be willing to accept I may never find an answer to what is wrong with Joseph. I know what she said, I realize that may be a possibility, but I will continue to fight if there is ANYTHING else to examine and look at!

July 11th all the children went to see Dr. Blackham. She is a psychologist. The doctors at the Melmed center wanted Joseph tested for autism but did not feel as though they could make the diagnosis themselves. At the first meeting Dr. Blackham asked questions about all the children including the pregnancy, their weights, their development, milestones, and how they were functioning now. John explained part of what we were looking for...a current assessment of the children and how they were doing. How we were interested in how Joseph was functioning in particular since when they Clark County School District last evaluated him at three he was not walking to talking. So Joseph went first. He was to undergo four hours of observation and testing. Testing was to at least include cognitive (IQ), verbal (receptive and expressive), autism rating scale and I am not sure if there were anything else.

July 15th, Joseph went in for his first tests. John also took Joseph's medical book to Dr. Blackham so she could see his previous diagnoses and testing. It is a lot!
July 16th, Joseph went in for his final set of tests. At the end of today's testing John took them home and then texted me. This is what his text said:

Initial meeting with her...she is confused by him. Says she could diagnose him as autistic but is not sure autism is the cause. Mitochondrial is definitely a possibility. Regardless he NEEDS services NOW. She will make a referral to DDD. It might speed things up. (Little does she know I have been fighting for NINE months now to get him services here! It is not the DDD but ACHSSS is holding things up. They suck!) She wants us to go to genetics for folate deficiency. (Don't need geneticist for that really. Just a doctor's office who is willing to do a blood draw for me). Wants us to do an EEG to rule out seizures (I had thought about silent seizures before but the neurologist in Las Vegas would not order the test for a 24 hour EEG. He thought it was unnecessary!). Said he got "lost" a lot. She wants to know if he is having small seizures that disrupt his concentration. Also agrees that prematurity is NOT the proper diagnosis (This is where I cried! After 4.5 years of fighting, after 4.5 years of trying to get specialists to listen to me....FINALLY, FINALLY someone agrees with me!). There is something VERY COMPLEX about his condition and she is frustrated and sorry she can't just say, "he has THIS". She said Sylvany's diagnosis was a little off (I reminded John when she did the assessment on Joseph that was BEFORE he could walk or talk! I said I would think that would make a HUGE difference!) and she will do the ADIS but can diagnose him as autistic based on previous medical treatment.

John also went on to text...
Sad, though, just like everyone else, she doesn't know what is wrong with him. She can't imagine how frustrating it must be to want to solve the problem without knowing what the problem is. She was very apologetic.

Does diagnosing Joseph with autism means nothing to me really. I can keep him in services for DDD and ACHSSS with his diagnosis of Cerebral Palsy. All I REALLY care about is getting my baby the services he needs so he can get better (or at the very least be better than he is now). All I want for his is a normal life and if he can never have that then I want a life as close to normal as I can give him and he can get. He deserves that!

James is next in the cue. He will be going to see Dr. Blackham next week. He will be going on July 22nd and 23rd. It will be interesting to see where he tests out. James seems to have VERY good expressive language and reading skills but POOR receptive language (like he recently tested out at 18 months old!). Plus I want to see if James might be gifted or he just has hyperlexia. On the 24th all the children will go to see Dr. Robin Laks. She is a pediatrician who specializes in medically complex children. So I thought we could go and see her. Finally, on July 25th, John (and hopefully myself) will be going to see Dr. Blackham for the results of Joseph's testing. That will be interesting!

As a final bit of news I had a friend on Facebook excitedly mention that her son was chosen for a genetic study.  I asked for more information.  Turns out the genetic testing lab is local!  I wrote as passionate a letter as I could muster in an effort to plea for them to consider Joseph as a study participant.  We will see if I hear from them.  Keeping my fingers crossed for my friend AND myself!