{Major} Jaxen Update

Wow, seems like a long time since the last time I updated.  Just goes to show you how busy my life has become!  No one very said that raising kids was easy, and now I know why!  It's the most difficult yet rewarding job there is.  But I think I'm doing a pretty good job at it.  Although some days, my children would tell you differently!

Jaxen has gone through all his testing and we've had our meeting with the school district.  I finally have all the paperwork and results in hand so I can share with you all.  Sorry ahead of time if this is long, but they tested so many areas!

First off, I got the official diagnosis for Jaxen's sensory testing.  Jaxen does demonstrate sensory concerns. The tests showed that Jax is not overly sensitive to input from his environment.  He scored in the probable difference level in the low registration and sensation seeking areas.  Which indicate that he seeks sensations MORE than other children his age.  Children who are sensation seekers are active and continuously engage in their environment.  The often make noise all the time, fidget, rub or explore objects with their skin, chew on things, and wrap their body around furniture and people as away to increase input during tasks.  They may appear excitable or seem to lack consideration for safety while playing.  The low registration score indicates that Jaxen may be missing cues in his environment, especially in the auditory area.  This could be due to his constant need for movement and sensation seeking behaviors which do not allow him to notice more subtle things.  He scored in the probable difference levels in four out of nine areas overall.  These scores indicate that he is a definite sensory seeker. 

This means that once he starts school, Jaxen would be provided a sensory 'diet',  This 'diet' would provide him with scheduled, regular times when Jaxen would be guided to play in ways that would meet his sensory needs.  For example, his teacher could not take away recess for bad behavior.  And there could be times when Jaxen becomes a distraction in the classroom that a para would come and take Jaxen on a walk or engage him in an activity that would meet his sensory needs and enable him to return to class ready to focus on classwork.

Even though we did not report any hearing or vision concern, Jaxen was tested in both areas.  He passed a functional vision screening in both eyes.  He also passed both the Puretone Hearing Screening and Typanogram screening for hearing loss. 

For Speech and Language, our main area of concern, Jaxen was tested with three different tests:

The first test, Goldman-Fristoe Test of Articulation-2, assesses the child's ability to produce consonant sounds.  With an average score being 100, Jaxen scored a 69 with 63 errors.  This scores him at BELOW expectations for his age.  He could not produce all age appropriate sounds in at least one word context.  The errors that he made, should be correctly produced by the majority of 3-year-old children.  Jaxen's errors were substitutions and omissions of sounds.

The second test, Receptive-Expressive Emergent Language Scale-3, is a 132-item checklist that uses observational information reported by the parents to identify any major receptive or expressive language problems in infants and toddlers up to three years of age.  {This is the test that Jaxen took at 20-months old that scored him with an age equivalent of 10-months}  Again, with an average score of 100, Jaxen scored a Receptive Language Score of 83 with a Below Average Rating and an Expressive Language Score of 76 with a Poor Rating.  The total Language Ability Score for this test was a 75, putting him at an age equivalent of 21-months.  {He was 34-month-old at the time of testing.}

Receptively, Jaxen understands just about everything {it's not uncommon for this score to be below average} but expressively, Jaxen has some work to do.  He is unable to use a least 50 words, say at least two new words each week, use real words when something has happened to him, use words ending in with -ing, have definite beginning and ending sounds, use words when needing help with personal needs, tell you where something might be (in, by, on), and refer to more than one by adding (S) on the end of words.

The last speech and language test, was a Speech Sample.  This test identifies his sound errors.  A 3 year old should be about 75% intelligible to an unfamiliar listener.  Jaxen was judged to be about 50% intelligible.  This test also inspected Jaxen's oral structures and revealed no abnormalities that hinder speech production.  His mouth, tongue, lips were intact and symmetrical.  Jaxen demonstrated appropriate strength, range of motion, and accuracy of his oral musculature.  Which verifies his burn injuries are not the cause of his speech delay.  His scar tissue is not limiting his ability to produce sounds!

With a score of 100 being average, Jaxen scored a 108 for Cognitive and Intellectual Skills.  Which means even with the speech delay, Jaxen's IQ is ABOVE expectation for a 3 year old.  {We NEVER doubted his intelligence!  He is TOO smart for his own good!}

Academically, Jaxen was given a test called the DAYC (Developmental Assessment of Young Children), which is five sub-tests that measure cognitive, communication, social-emotional development, physical development, and adaptive behavior.  With an average score of 100, Jaxen scored an 84 with a below average rating. 

And finally, Jaxen scored a 120 in the area of social-emotional skills.

SO, after reviewing ALL this information, Jaxen meets criteria for Sound Systems Disorder - Articulation and/or Phonology.  The evaluation report documents the extent to which Jaxen's sound production is outside the limits of State designated normative data and addresses the adverse education impact of the child's sound system disorder.  The student is unintelligible to the unfamiliar listener and the team has determined that as a result of the disability the student requires special education.

So the good news is Jaxen will start speech classes at Cass-Midway in December.  He did not qualify for preschool services.  He is super smart and the ONLY thing is lacks is the speech and language.  Once his speech is caught up, all his other scores will improve also.  At this point there is no need to doubt that Jaxen won't be a caught up and ready to enter kindergarten on time.  He's got plenty of time and a lot of people in his corner.  We meet with Jaxen's 'Team' next week to put on paper a plan of action.  His team not only includes Jerry and I, but also the Elementary School Principal, Speech Teacher, Director of Special Services, and the Parents As Teachers Director. 

Checking In

Whew!  Things are getting a little crazy around here.  Every kid has something different going on and Jerry is getting to work a ton of overtime at work!  Which has been a total blessing, it couldn't have come at a better time.  But with him being gone an extra 2 days a week, it's been a struggle to rearrange my schedule and take all the kids to appointments that I didn't plan on taking them to.  But we are surviving, let's start with the youngest.

TYLER

Tyler's lead screening hasn't come back from the lab yet, I blame the government shutdown.  I think it's driving the nurses crazy, they keep calling me to tell me that it's still not back.  The rest of Jaxen's blood work came back and it wasn't perfect.  So little man must get his blood drawn again next week.  Tyler's white blood cells were elevated, which could mean something as simple as he was fighting some type of infection.  However, the scary part is that it could also mean something as horrible as leukemia.  So they want to recheck to verify the white blood cell count went back down to normal levels.  I'm not freaking out yet, because I honestly don't think anything is wrong with him.  He is a very healthy child.  But it's always nice to get the bad things ruled out completely.  So keep him in your thoughts because next Thursday or Friday is going to be a rough day for him.

Ty has finally added a few more teeth to the bottom jaw!  LOL, besides the two front teeth, Tyler just got his first set of molars.  It's quite funny how he has the front teeth, then molars but missing the ones in between on both the top and bottom.  I imagine teething has been the reason that he's been a total bear lately!

JAXEN

Since the last time we wrote, Jaxen has had his R.E.D meeting.  Basically, we had a meeting that went over everything we knew of Jaxen and determined if there was any addition information or testing needed.  He has about 3 - 4 more tests that need to be done to determine if he qualifies for services when he turns three.  It's all been a little overwhelming lately, he is doing so well and has come a long ways. . . I just hope he can continue to get additional services before he has to start school.  

Jaxen's tests are on November 1st at a Preschool in Belton.  Then two weeks later, November 15th, we find out if he qualifies for services beyond three years old.  Fingers crossed, I would love to see him continue on with at least Speech Therapy.

JACOB

This kid is going through some type of middle child phase. . . he has to be!  He's a mess. Crying about everything, getting angry about silly things, causing trouble just to cause it, and destroying things.  At first, I thought he was acting out because Jerry was gone more than he use to be {and I still do to a point} but now I think it's a boy/age thing.  The other little boy we watch after school is doing the same thing and driving his mom nuts, too!  I've really tried to make time for just Mom and Jacob activities and when Jerry's home he tried to include Jake in the "mainly" stuff.  Like tinkering in the garage.  I think he's just trying to find his place in the family.  He's not a baby anymore, he's a big kid. . . but he's not the oldest.

Jacob is doing really well in school, we have been having our issues on the bus.  And I'm afraid it won't be long until he gets an actual bad note sent home.  He doesn't see the bus as an extension of school, he see it as playtime with his buddies and that's getting him in trouble.  Jake is definitely a follower.

CHLOE

Little mama is doing good.  She's got her own thing going on most of the time.  With her is mostly Girl Scouts or the orthodontist.  She's doing great in school, really proud of her and the effort that she's putting towards her school work.  Third grade is suppose to be the harder transition.  And according to her midterm report card she's getting all A's and one B.  

Parents As Teachers

Because of budget cuts last year, we were unable to get the boys (Jaxen & Tyler) into parents as teachers (PAT)- even with Jaxen's speech delay.  The school district got cut down to providing services for only 10 families.  You can imagine how super excited I was during back to school night when the PAT coordinator found us and told us that they were able to offer services to more families and we were on her list.

Yesterday, was the first time Mrs.R came out to the house.  It was nice to finally have a program that Tyler could participate in to.  He was so excited that he got to play with the toys and be included.  The PAT coordinator, Mrs. R, is part of the team helping with Jaxen's transition into the school district. So we took this opportunity to try and give Jaxen a few tests that he needs done as party off the transition process.  Jaxen just wasn't having it.  Mrs. R was new and Jax just wouldn't cooperate.  Both his hearing and vision screening were scored as inconclusive.

Tyler's screening showed was I'm beginning to suspect and have plans in place to deal with -- he too is delayed in the speech and language area.  I am not jumping to get him enrolled in services as of now (he is only 15 months old) but I do have everything documented and ready to go when we feel we need to.  The screening showed that Tyler has no concern with his gross motor skills - climbing, throwing, walking.  He is on the boarder with fine motor skills - coloring, recognizing and pointing to objects in a book.  He is definitely behind "average" in speech and language.  So now it's all about timing and when we want to get Tyler into services -- and again, I'd really like to wait until I know he just not a late talker. 

Tyler - 15 month checkup

Tyler weighed in at 25.5 pound and is 30.5 inches tall.  He is in the 60th percentile verses other kids his age. 
Only concern for him is that one again, he is not saying any words.  I take that back, he will say Chloe.  He will copy me when I call for her, it's very cute.  So I guess they say he's not saying any functional words yet.  Which he should be saying new words daily... and have a vocabulary of 15-20 commonly used words by 18 months (which is 3 months away).

Our doctor seemed ready to refer him to Children's Mercy for a speech and language evaluation but I asked to make note of it and refer us at 18 months if there is not improvement.  Lee from first steps said I didn't need the referral from CMH and that we can get Tyler tested with them simply as a parent referral. I'm not sure which route we are going to take but I do know if he still hasn't spoken in 3 months we are starting early intervention.

Tyler also need to have his blood drawn for a lead/iron screening.  So I had to take him over to the lab in the hospital for them to draw blood.  Poor little dude did not enjoy that and was completely ready to go home after all his shots and pokes!

Jacob - 6 year physical

Jacob's checkup this afternoon proved that he is 100% healthy and a small fry!

He is 3 foot, 6 inches tall and 40 pounds.  However, he is only it's the 5th percentile in weight and the 15th percentile in height!  Which by itself can be alarming, but he's been on a constant growth all his life.  His chart shows he's gaining weight and getting taller every year.  Plus, his momma was a pretty small kid growing up.  :-)

Justice.

I'm not sure how many of you know our old landlord, Trig.  He was like family to Jerry.  A while back, he was accused of having a sexual relationship with a minor.  Trig has always denied these accusations.

When we moved out of his house, we separated ourselves from him and completely denied him access to our children.   This was a decision Jerry and I made together and one that was not received well by Trig.  In fact, that it's why we had most of the issues we had legally with him.  He was no longer in control of our lives/decisions and tried to control whatever he could by makeing our lives a living hell.  He failed.

Months followed and almost a year ago, Trig was finally arrested and charged.  He posted a $50,000 bond and has been dragging out his trial ever since.  His kids and ex wife have been raked over the coals.  And he has put them in a financial bind by dragging this all on while not helping to support his kids.

I am relieved to report that a week ago, Trig took a plea bargain and agreed to pled guilty to avoid life in prison.  Although he still it's adamant that he didn't do anything wrong, Trig got a 7 year sentence with the Department of Correction.  And even though it appears he will only have to serve 2.5 years behind bars before he is eligible for parole, he will NEVER get custody of his children and will NOT get to have them overnight without a babysitter.  Yay!

This now allows Trig's ex wife to take the kids and move them closer to family.  They are struggling with all this information and changes in their life's, and they need the support of family.  I will be very sad to see them move away but I know they need away from all this crap.  Then when Trig is released, he will have to drive to see them. . . And will have to go through a different state's legal system to even gain access to them again. 

While this whole deal is sad, I am so happy to report that justice has been served!  I just hope there is a special place in hell for him.

Jaxen's Transition Meeting

This morning was our transition meeting with the school district about Jaxen transferring into the their early childhood education program.  It was an easy meeting.  The meeting consisted of Jerry, myself, Jaxen, our Missouri first steps coordinator, the head of Midway's Special Education Department, Midway's parents as teachers cordinator and head of Belton School Districts Special Education Department.  We all sat around the table and discussed our concerns for Jaxen and the difficulty he is having with speech, language and concentration.

We were there for quite a while because Jaxen has quite the file started!  The professionals were very nice and answered all our questions and concerns.  Our next step is our RED Meeting on the 27th, which means we go over all the information that is documented and decide what tests Jaxen should receive.  But between now and the 27th, Jaxen is having a sensory screening (to determine if he can feel pain - where at and to what extent).  {Jerry and I are not sure if he feels pain like the rest of us, most of the time he gets hurt he only reacts for our benefit.  So this will be an interesting test!} And we have a hearing and vision screening that Jaxen will have to complete next week before our RED Meeting.

After our RED Meeting, and his testing, we will get back together to discuss what services Jaxen will be offered.  Our choices are:

1) Continue as is with Speech and Language Therapy but through our school district.  Probably twice a week.

2) If Jaxen is developmentally and behaviorally behind we will have the option to send him to an early childhood education preschool in Belton. The school will provide a bus or van to transport Jaxen from our home to school and back, Monday through Friday. (Not sure how I feel about this... my baby on a bus!)

3) Or our last option is to discontinue services until Jaxen enters Kindergarten.

The next month or so will determine what we can do for Jaxen once he turns three.  Because at three, Missouri First Steps ends their services with him.  The process of transitioning will be extradited because Jax turns three in just 3 short months and if he qualifies for services he can potentially start them on his 3rd birthday.  Normally, this process of transitioning it's started 6 months out, but because that was June and no one was at school then, we are getting a late start.

Please wish it's luck, this is uncharted waters for us! Once again, Jaxen has to do things differently! Lol

I hope I haven't last or confused anyone. If you have questions please ask! Most people are quite about the delays their children have but I feel the need to share it all with you.  You are apart of Jaxen's life and can see the difficulties he faces.  And I think it's important for other parents to see that, delays happen in all types of children. You can't ignore it and I won't.  There is no evidence that Jaxen's burn accident caused this delay, while I am sure it didn't help anything- Jaxen might have been delayed regardless.  With the information and resources we have, Jerry and I are doing everything we can to give Jaxen the best start on life and in education.

It's been a while...

Whew, it's been a long time since my last update.  I am hopeing to have more time to update this blog now that I have an awesome phone that is blogger friendly.  Hopefully, now I will be able to update from anywhere... lucky you! :-)

Lots have been going on around here since the last post, and there it's no way that I can go back and catch you all up, so we will just pick up from here. 

A couple weeks ago, our family has started a new reading tradition.  We make sure to take time after dinner /before bed to sit and read a story out loud.  Jacob it's starting to read and with our help he is responsible for reading a paragraph, Chloe is responsible for a page and Jerry and I take turns as needed.  And I'm proud to say, as of tonight we have finished our first book, Harry Potter and the Sorcerers Stone.  It was so much fun reliving the wizarding world with the kids.  Jacob was hilarious when he finally figured out the Harry was a wizard!  It was fun listening to Chloe *guess* who was the bad guy.  She had everyone pegged as the bad guy, everyone except Professor Querral. Lol.

We are in the beginning phase of getting Jaxen transferred to the school district for his speech therapy.  Tomorrow is our transition meeting, where all our questions will be answered and new tests will be ordered to determine how far Jaxen has come and how much farther he needs to go.  I am exited for the new phase, but I do not want to say goodbye to our speech lady who has worked so hard to help us get Jaxen to where he is today!  Wish is luck tomorrow!

Jacob and Chloe are both doing well in school.  Jacob comes home with more redirects and gets in trouble a lot more than Chloe ever has, but truthfully nothing has been completely out of line.  And most of the boys get in just as much, if not more trouble. 

Tyler has finally found his voice.  It's a lot of baby talk and screaming to be heard but it's music to our ears.  He has yet to speak real words but I think it's coming.  I believe he is still behind but I know what we are doing now!