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Tuesday, July 28, 2009

AND He IS Going to Pre-K

I didn't get on yesterday with an update...it was such a mentally draining day! Six hours spent with the board figuring out Zachary's future wiped all of us out! The day started nice and early at 8am for the meeting and did not end until 2pm.

We were told because of all of Zach's resent evaluations from his therapists they would not have to run their own tests but when we got there that had decided best to do their own.

First step in the room and Zach was glued to us until he saw we were talking with these people and it was OK to go to the other side of the room - we weren't leaving BUT he needed to be reminded all was okay.

He went with Miss Tori (school psychologist) to start her testing. To our (and their surprise) Zach worked for over 2 hours taking tests. He stayed as focused as he could.

When all was said and done Zach tested for them at the same levels he's tested at therapy for fine motor, and gross motor......on target. For speech and language he tested also the same as his SLP has gotten. Above age range receptively and low average for expressive with a large gap in between the two. His articulation was well below where it should be.

What was the biggest surprise of every one's day was the test for his cognitive ability ------ he finished the whole book which at the end had him asking questions an 7 year old should be able to answer! Yep I said 7 year old WOW and YIKES!!!

Where he really lacked was with his adaptive or self-help development he had a 24% delay, and his self care age equivalent was 1 yr 6 mts old. He had a 26% delay with his social or emotional development.

After the testing was done we broke for an hour so the team could write their report and decide what services Zachary would receive. We got back about 5 minutes before we were to come back thinking they'd be done --- NOPE it took another 45 minutes and a couple different people talking to different people on the phone to make the final decision as to what services Zachary would receive.

When we got there the talk was leaning towards no school and continuing with speech a couple days a week in the school setting. BUT it was obvious 2 of the 3 ladies were pulling for school - it was just that his deficits weren't that bad. When all was said and done we walked out of there with Zach in ESE Pre-K 5 days a week from 8am-3pm and his first IEP in our hands.

One worry Doug and I had was the school he would attend....as I've said before the one we are zoned for only has one nurse. BUT as it turns out the team had the same worry and because of Zach's medical needs they have to place him in the safest environment.....which was the school we wanted AND because they 'had' to place him there they also HAVE to provide transportation (which was another worry because Zoe and Zach will be at different schools at the same time -- I had no clue how I was to be at the school to pick up Zach and at home waiting for Zoe to get off the bus)

My only complaint of the day was the SLP and the psychologist both saying to me my son is not dyspraxic and does not suffer from SPD - that he just refuses to do things or talk because he is 2 almost 3 years old ----- these women had known my son for all of an hour when this was said and it really rubbed me the wrong way!!!! My son DOES have dyspraxia and DOES have SPD, you can ask his doctors, you can ask his therapists, you can ask his grandparents OR you could simply ask me about my son and I do know him best. I plan on spending time with his teacher and letting her get to know him and his struggles with dyspraxia and SPD. When we got home I was talking to my FIL and telling him what they said - I had never seen him so irked about a comment made by a professional --- he simply said "you can tell the difference between a 2 year old who refuses and Zach who struggles!! -- Zach does have these things and now it is up to you and Doug to bring it to the teacher and staff's attention at his school -- BUT they will see it in a day of having him in the class"

Everything really came together yesterday and worked to Zach's advantage! Now the stress of preparing him for school and the bus begins..............BUT all will be fine in the end!!!!!

Sunday, July 26, 2009

Tomorrow is "The" Day

I cannot believe how fast the time has gone by....that old adage of if you are looking at a clock time goes slower was not happening for us.....I'd say time went at just the right speed.

Today our family is a wreck - it has been the worst morning we have had in a long time.

Zach in complete overload and not talking only crying.
Zoe is over excited because she gets to spend the night at her grandparents home.
Doug and I just don't know what to expect tomorrow - we are worried about not getting Zach into the pre-k program but also scared about him getting into it. I'm having a really rough time explaining how this all feels. It is another step, another step we have to come to terms with Zach and his issues.

So right now we have Zach who is out of sorts, Zoe who is a spaz, and a mommy and daddy who just want to relax and not think about anything.....Yeah that sums up our morning pretty well.
Hopefully the rest of the day will go smoothly.

Friday, July 24, 2009

Letter in Hand

And this is what it says...........

To Whom it May Concern:

Zachary S. has a history of childhood apraxia of speech. In addition to his current evaluation I hope you will find the following information useful. He has been receiving PT, OT, and ST at ---- for approximately 15 months.

While Zachary has made tremendous progress during this time, I have concerns regarding his current communication ability and the impact it may have on him in the classroom. Zachary continues to voice voiceless consonants such as /p/ and /t/ in initial positions of words. He will occasionally substitute m/n. He has difficulty repairing communication breakdowns in the home and clinic. It appears based on clinical observation and parent report that Zachary's communication breakdowns tend to occur when he is in situations that he interprets as stressful.

Zachary will benefit from intervention to improve his articulation skills and assist him in communication needs and expressing frustrations in the classroom. I hope this information is beneficial to you as you decide the most appropriate services and placement for Zachary. Please feel free to contact me if I can be of any more assistance.

Thank you,
Kristin ----- MA CCC-SLP


I am so impressed with all of Zach's therapist - they have all gone well above their call of duty when it comes to my son. Ms. Jerry re-evaluated him and wrote a very detailed 2 page report on Zach --- just to take to this meeting. Ms. Patty also wrote a special progress report on his last PT session to take with us on Monday. AND as you can read Ms. Kristin wrote this wonderful letter for us.

The past 15 months with these ladies have been wonderful - they are all amazing women --- Angles on Earth with all they do to help not only Zachary but other children. It even goes beyond that - what they do for families, I can't put into words! They care so much! I hope I can show them how grateful we are for all they have done so far!!!!!

3 More Days to Go

I am so happy the weekend is here.....You know when you wait for things and are anxious for them to happen they seem to come to you slower - NOT in this case I would say time is going at the right speed for me. Definitely not too fast and not too slow.

I have one last piece of paper work to pick up today, a letter from Ms. Kristin. Zach is now voicing (http://en.wikipedia.org/wiki/Voice_(phonetics) T and he wasn't 3 months ago so his SLP is writing al letter stating that this wasn't happening 3 months ago when she did the evaluation but is now an everyday occurrence we have not been able to repair. Voicing is hard for Zach he also voices P and has never been able to use it......P is one of the first developing sounds - so it is a major concern that Zach at almost 3 still does not have that sound.

This is the chart they use to decide if your child has an articulation problem -- the child must be a year behind in 3 sounds ---- Zach is behind so according to this alone he will be granted an SLP in the schools. http://www-tce.stjohns.k12.fl.us/teachers/butlera/Speech%20&%20Language.pdf

In the initial position Zach does not use p in the medial he does not use m or n right and in the final he does not us m --- that is 4 letters a year behind he will be 3 in Sept BUT does not use any of the initial sounds for a 3 year old, none of the medial, and only a few of the final.

I am still filled with plenty of nerves over this whole process but I hoping it will all go smoothly and that the next 3 days come and go quickly.

Thursday, July 23, 2009

Decisions....Decisions....4 More Days

Last night I spent time looking for an Out of Zone waiver for Zachary.
I need a pros and cons list on this one as it is a big decision to make if all goes as planed on Monday. I'm not a very good decision maker.

Zoned School
Pros
Zach knows and has worked with the SLP.
The teacher is also a certified SLP.
He will have transportation - meaning I don't need to figure out how to be in 2 places at once because Zoe will be at a different school and the kids start/end at the same times.

Cons
The school is further away.
The school only has one nurse - and Zach must have a nurse to administer feeds and in case of emergency - so with only one nurse I'm worried about the help he will get.
Even with transportation I don't feel comfortable because the bus travels by highway.
Last year when trying to see the different pre-k programs - this school was not accommodating to making an appointment --- therefore we never saw it.

Out of Zone School
Pros
We know his teacher, so Zach will not need as much time to adjust to her.
There are 3 nurses on staff -- this means I don't have to worry because one is dedicated just to ESE and if she isn't available to help there are 2 more to help.
The school is closer and no driving on the highway.

Cons
We lose transportation - so mommy has to drive which also leads to......
The worry of being in 2 places at one time. ----
BUT on the Pro side of this I think that Zoe would be able to come home with a friend and Doug can either take Zach to school OR Zoe to the bus in the mornings.

At either school I think he will be in good hands and learning a great deal -- BOTH schools are excellent schools.....both schools are A rated and both have recently won awards.
Decisions....Decisions....

Wednesday, July 22, 2009

Almost There!

It is Wednesday so we have 5 more days to go.

As I'm waiting I'm a ball of emotions......I'm sure there will be more emotions and the ones I have now will become even stronger as the time gets closer

Excited: to see what the future holds.
Happy: this will all work out the way it should.
Scared: what if this doesn't work out?
Sad: this is a hard place to be a hard reality to face.
Anxious: again what if this doesn't work out in Zach's favor?

Yesterday while we were at therapy the SLP who works in the schools over the school year as we were leaving, said to me "Go in there guns a blazing and get all he deserves!" ----- Note to self.............Listen to Jennifer and don't be intimidated by these people!

Monday, July 20, 2009

1 More Week

We are so close to the 27th --- 1 week away!

This weekend Doug and I were able to go threw all of Zach's reports and make our own outline of what we want to say. We have a little bit more left to go over BUT I'm feeling pretty prepared for next Monday.

Wednesday, July 15, 2009

12 Days & Counting: Look What Zach Made

Today at OT Zach spent some time trying to learn his colors in the beginning. He did a puzzle that had red, yellow, blue, green, and orange wood pieces. Colors are very hard for Zach and we have to use many ques to get him to pick the right color. For example we sign the colors to him - today that did not work because he wouldn't make eye contact with our hands. Today we ended up having to show him an example of the color we said, then allow him to try and find that same color with the pieces. At first he still used process of elimination by saying "dis un?" (this one) as he grabbed a hold of a puzzle piece. We did this for about 10-15 minutes before he finished it up.

Ms. Jerry is starting to put her focus on helping him to get ready for the classroom environment. Zach spent the rest of the hour doing something kind of new, he worked on coloring, cutting, and gluing. All of which are challenges for this little boy.

We are noticing more and more visual sensory issues that Ms. Jerry believes we didn't see before because there was not as much focus put on doing visual activities. Today Zach had many break downs and problems with his eyes. He would have to stop and look away, blink, rub his eyes or he would begin to slouch in his chair as he tired. Ms. Jerry let him take many short breaks to regain himself.

COLORING: I noticed lots of looking away as he colored, tight blinking, and rubbing, and rolling his eyes while doing the coloring. Also with coloring he does not yet hold a crayon properly and has limited hand/arm strength so he tires very easy while doing what most would call a "simple" activity.

CUTTING: During the cutting I noticed a lot of looking else where and much blinking. When working on the cutting he needs assistance to move his hand to make the scissors work - but he did get a hang of it enough where at one point Zach was able to do it by himself. He can not hold the paper at the same time so Ms. Jerry had to hod his hand on the paper while her other hand helped him with the cutting.

GLUING: Gluing was the easiest part. It just needed two dots of glue --- BUT watch out it got on his hands and the screams began. This is something we are well aware of and used to.

It took him a full 45 minutes to complete what I think is yet another wonderful masterpiece.
Meet Mr. Elephant.........

Tuesday, July 14, 2009

13 Days Left

13 days and counting!

Today was therapy day ~ a day of therapy that got turned all upside down.
Normally Zach starts with OT then PT but today it was backwards and it threw Zach for a loop but he was happy to see Ms. Patty first (surprised, but happy)!

We spent PT at the pool. He did a wonderful job. His dyspraxia is very sever when we are there so PT gets a little hard to watch from time to time. It took him a bit to warm up and get used to the environment but he did it. While Mommy got dried off he had a fun time playing with "Dama Doni" AKA Grandma Toni and Pada in the pool for a little while. It was nice because by that time he was comfortable in the water.

Then we went back to the office for his OT session. Ms. Jerry finished up her report for me to take to his Summer Clinic. It is very long 2 pages and it was rather hard to read. No parent likes hearing how much help their child needs. As a parent you want to hear "he is all fixed, you are discharged" At the same time, on the other hand....it was good to see how much help he does need (as long as the school system sees/feels the same way about him) and how detailed she had her report for the them to see on the 27th.

I did notice one part missing that I'd like in there so she is going back and adding it tonight.

13 days and counting........I can't wait! Summer Clinic is so close.......................

Sunday, July 12, 2009

15 Days To Go

Today is Sunday July 12th and we have 15 more days in our countdown.

Just a quick little update about what is going on around here.........

Zoe....has yet another virus.
Zachary.....also has a virus.
Mommy......yep, you've guessed it....has the same virus.
Daddy....well, Daddy is a lucky man because so far he has managed to escape the claws of this nasty virus.

This all started out on Thursday night. It seems it is coming and going, vomiting, diarrhea....just plan out feeling yucky for the three of us. None of us have had a fever, which I'm finding a little odd.

Zachary is having a rough time...he is not able to get on his pump, and you can tell he is losing weight. I will take him in tomorrow for a quick check on that. Zoe is doing better but for a really sore tummy. Mommy is feeling much. much better then the other day.....so the good news is that this virus may be on the mend. Let's hope so....we want it out of this house so we can enjoy our visit with Grandma and Pada the next couple of weeks.

Friday, July 10, 2009

17 Days and Still Counting....

I just ran to the mail box and received the "Parent Invitation" for Zachary's meeting on the 27th -- this is becoming more real by the day!

When I opened it I had a smile on my face....as I read it I started to get nervous. This is a big step to be taking. A step that I hope favors Zach in continuing his progress.

The invitation states that the purpose of this meeting is to
1: review the evaluation information and determine an appropriate educational program (Eligibility/Placement Staffing)
2: develop an individual educational plan (IEP)
3: Other: Pre K Clinic Evaluation

It also lists all the people who will be there.... The LEA (local educational agency), a school psychologist, a basic class teacher, an SLP. It also says that the service coordinator can't attend the meeting. I have the option of also bring anyone with us that can help --- I'm not sure yet if anyone is coming.

This is right around the corner! Let the countdown continue...............

Thursday, July 9, 2009

Part 2: Let the Countdown Begin to ESE IEP Meeting

18 days....and counting

Today while we were at ST Ms. Kristin and I were talking about some of Zach's issues. So I asked her a question about getting into the ESE program for speech.

We are fortunate that a SLP who works at out therapy center in the Summer works for the same school that Zach is zoned for. Ms. Kristin ran out of the room and pulled Ms. Jennifer into it - she then pulled up the last evaluation Ms. Kristin wrote on Zach.....pointed to a couple of things and said................................"If I were the SLP doing his clinic, I would take one look at this, this, and this and he'd be in!" "I believe the other SLP's who may be there will do the same thing!"

I was able to talk with her also about the whole OT issue -- which right now Zach seems to need more the speech. Her reply was.........."Zach must be in the classroom for 6 weeks - then the teacher can request an evaluation. It goes from there"

So based on what Ms. Jennifer had to say --- looks very hopeful Zachary will end up in the ESE Pre-K room in our school district - complete with still having ST on a weekly basis.

WOW! Such mixed feelings on all of this - I'll explore them more when we know 100%.......

Let the Countdown Begin to ESE IEP Meeting

18 days until Zachary's meeting. I've been waiting a long time for this to come....18 days is such a short amount of time in comparison.

Ms. Jerry has been running more and more tests on Zach, that she would normally do at the time of a re-evaluation. Yesterday she worked on some gross and fine motor skills -- hard as it was to watch, I'm sure it will be hard to hear the test results. A lot of his dyspraxia was present in the tasks he preformed yesterday. Hopefully she will have everything scored for us and her report written next week.

We are unsure what the school will do with the answers we get from the findings in Ms. Jerry's report, as his meeting does not involve an OT - I've asked why not and gotten no answer.

Well the countdown has officially started......................

Wednesday, July 8, 2009

AMAZING News!

I received a call today from Zoe's hematologist and the news was "Zoe's appointment has been canceled BECAUSE...............(drum roll please..........) her WBC count is up, her neutrophils are up!"

The doctor believes what we were seeing was a virus, on top of a virus, on top of virus. I've never been so happy to hear my child has a virus - EVER! There is no need to go back for another test and definitely NO NEED for a bone marrow biopsy!

I went outside and danced in the rain with Zoe swinging her in huge circles hugging her and crying tears of joy. My baby girl is going to be just fine....it was just multiple viruses making everyone nervous. I'm just so happy to say NOTHING is wrong!!!!!!!!!

Wednesday, July 1, 2009

Blink of an Eye

I started this blog on April 28, 2008 in the past year and 2+ months my family has seen our share of ups and downs, struggles and triumphs.

Today is July 1, 2009 in a short 26 days we will be finding out where Zach's education future is headed. On July 27, 2009 we will be taking Zach for more testing and interviews with our school system. The hope is he will qualify for our states ESE preschool based on what I've read and heard Zach shouldn't have a problem getting in, but you never know.

In another 2 1/2 months my little man will be 3 and hopefully on his way to school.

Time sure does pass in the blink of an eye!