The days life stinks

It's small stuff, but it does sting.....

Today I received Landon's report in the mail.  I said I wasn't going to read it, but I read most of it.  It was 26 pages long.  Not one positive was mentioned.  It didn't say anywhere that he has a wonderful smile, laugh, is happy, or affectionate, or has a great memory.  Nothing.  It did say, however, that he is delayed in every area of development.  Not a good feeling, not when you have been working with your child since utero pretty much, and he has been getting services since 10 months.  logan is headed the same way and i will probably have to write this same post in the future, and it is very much not fair.  I know many others have kids with worse issues, or maybe they never could have kids, but it hurts very much and it just isn't getting easier.


Then our babysitter cancelled on us last minute, we scrambled around and got Alex's parents for part, then my dad.  I just got home at 10:10.  All my dad says is "kinda late, huh" and then pretty much leaves.  UGH.


I wish my mom was here.

How does this affect your marriage?

It affects mine.  Adversity is hard on a marriage.  Really, a good marriage should be equipped for anything, since you are in it for life and life is never easy; however, this feels very difficult now.  I have the emotional burden of worrying about my kids all the time.  my husband gets angry, wants to punish Landon if he peers over a book, etc, he does not understand. It has not been easy.  Alex is quick to lash out, to make comments, to get frustrated.  I just want a break.   I need a break from it all! Weekends are better, so let's see how this goes...

Silly Landon

Landon has always had such a silly, silly personality.  His laugh is the best and he makes me so happy when he is happy.  He has always been a great sleeper and loves to nap.  Yesterday was the first time he resisted taking his nap.  I put him in his room, in his bed, and watched him leave on the monitor.  He came downstairs, he was playing in my room, he was everywhere.  I put him back in there and put the gate up.  He clearly understands what he needs to do. He cracked me up.  He kept taking all his blankets, stuffed animals, toys in his bed and throwing them out over the gate.  I would put them back in, without talking to him, and direct him to bed. Eventually, all his trains were out there too ha ha. After an hour, I brought him downstairs, gave him a snack, and then he went back up.  I checked on him about 20 minutes later and couldn't find him in his room, but the gate was there, and I know he can't get over that gate, so I looked everywhere. He was sleeping behind his train table on the floor lol.  he was curled up with his little blanket.  I put him in his bed and smiled, thinking, what a silly, smart child who I love to pieces :)

Tough decisions

I am facing a tough decision, between Landon's placement and my school.

Landon is being recommended for a SCIS class-  Special class integrated setting (typical kids and kids like mine).  I have toured about 5 of them and am choosing between 2 of them now:

park hill which is part of BOCES @ children's village

or

SPICE which is part of elmcrest


PROS/CONS

Park Hill
PROS:
-2 miles from home
-lovely indoor gym area
-all related services people met with me when I toured, great areas for OT/PT
-kids seemed more typical
-2 days per week, mixed with 16 typical peers, 2 days per week, just the group of 8 who are special needs

CONS:
-not prompt trained, but experienced SLP
-Only 2.5 hours per day  9-1130  Mon-thurs and every other week, they have a friday session

is that not enough time to get speech 4x, pt 2x, and ot 2x??
how can i work with that schedule?!?


SPICE
PROS:
-8-1 program  mon-fri
-staff seemed nice
-classrooms had lots of activities
-there are structured/unstructured times
-music therapy available

CONS-
not prompt trained, not much experience on apraxia,  but having luck finding this
is that too long of a day?
-kids seemed more severe

I can work with this one.



then there is my school, Delaware Academy, in syracuse.  We are in big trouble and this is our 4th year restructuring.  We are the lowest performing school in all of new york state (Even nyc). We are not doing well.  Next year, we may stay open and the hours are 730-230. My director is trying to find a way for me to split between schools so I can drop off Landon. my inlaws would pick up.  Then, there is the part of me saying work with itinerant kids, get work with an agency and take the year off, but then there is the other part saying, this is the last year of delaware, because after that the district has suggested we become a charter school.  I really do need to work.  I don't make much money, we have debt to pay off, and Alex is a teacher too.  I hate working not knowing what is going on with my kids and having a hard time at work.  If Landon is in the right place, will it be easier??

Advice?

Having a hard time

Lately, things are hard.  A few weeks ago, there was a good period.  I know it will be back again.  Where to start?  First, today is apraxia awareness day and I did wear blue and white, but celebrated quietly.  I know my son has apraxia.  I am 1000000% sure of it, but the evaluators would not listen and would not indicate in their report.  So I feel weird saying i know he does, when experts say maybe he does not.  But again I know he does.  He has all the signs.  Those who did his preschool evaluation feel he has ASD, I do not agree.  Am I in denial?   I don't think so, but my heads ends up hurting so much, that I can't keep track.  The psychologist came over last night to talk to me and said some pretty rude things... such as Landon is very difficult and he is lucky to have me, because others' couldn't handle him.  So not true.  He is happy and loved and we are the lucky ones.  She said he would have a hard life.  That's a bit of a jump to say too.  UGH
Anyways, he was observed at daycare for all these evaluations.  I should have had everyone come to my home, but the scheduling was so tight.
 Basically, the team said:
- he likes #5 too much
-he taps his hands sometimes
-he spun a toy
-he rolled a marker and sunblock
-he went on a different slide than the other kids did
-he made little eye contact with unfamiliar evaluators, but good relationships with his therapists and teachers
-he knows too much rote stuff
-he jargons-
-imitation skills are weak

I feel that all of this could be explained due to the apraxia, the sensory processing issues, and the global apraxia obviously.  It hurts, it feels overwhelming, and I will do nothing about it.  I will not pursue an evaluation.  We have 2 others in my family with apraxia.  My husband's IQ was 134 when he tested into the gifted program. He talked late and he teaches Math.  Let's give Landon a chance.  Let's support Landon where he is.

Now the CPSE is 6/4 and I don't know how I will sit through it without breaking down.


I love my son no matter what.  I think 2.5 is too quick to rush into anything and I want to increase the speech first.

It never ends

I thought it was all over, the testing, the constant worrying, since I could not be at any of the testing, but it continues.  The psychologist did an observation on my sweet child yesterday at daycare, at the daycare where there are no visual cues or any way for him to communicate at all, at all.  He was observed pointing to the numbers he likes, he kissed a picture on the wall, I guess he spun a toy plate, and then he was rolling the people inside the dollhouse.  He also opened and closed his hand, which is an overflow from motor planning the OT said to me.  It's funny, because I honestly don't see these behaviors at home, and I think it's because it is easy to interact with me and I understand him.  He was able to speak some more when she was him at daycare and she said he was very happy.  he refused to imitate a play scheme for the psychologist, but he will do that with providers that he knows.  Anyways, now she wants to come do an Autism rating scale tonight. I could barely sleep last night, my head spinning, hearing ritualistic, self directed, hyperlexic, words that keep replaying.  It's funny, because if it is a typical kid and they know their numbers, it's amazing, but once it's a kiddo not really talking, that is not the case.  It's annoying.  I am trying to think what to do.  I don't want that scale into his paperwork and I will not be seeking out a diagnosis.  In NYS, he would get the maximum amount of services with a preschooler with a disability label and that is what I intend to do.  I don't think you can turn off ASD and my son is a different kid home with me, or with people who take time to get to know him.  He also seeks out interactions with adults constantly, but much harder with peers.

So yes- language delay.
Some sensory concerns
some repetitive behaviors
I get it, but I still think that new DSM can over identify. 

So still thinking what to do about tonight...

I am so unsure.

I am just so over all this.

I want to love all over my boy and praise him for being who he is.

Constant testing

Here is the count.  Landon has been in EI since about 10 months.  He was out for a short period, which only added up to more testing.  He has had 21 evaluations now, 21!! 6 for speech, 6 OT, and the rest are gross motor and then cognition.  He is smart.  I know it, but he is stubborn.  He won't do it unless he wants to and that is that.  I can get him to do things and so can people who knows him, but a stranger coming in, no way.  Today he finished his fourth and final evaluation of this transition to Prek process with throwing blocks at the SLP who asked him to do something with them.  The OT called me and said he got a 76 on the Peabody, which is a difficult test, and to me, is showing nice progress, but said she saw some behaviors she wanted to mention.  i hate the behaviors things, because then i think everyone is thinking ASD.  I applaud all of you who wanted to  have your kid seen by a neurologist or dev. pedi so young and wanted to seek out a diagnosis to get a lot of services, but I don't want to.  Unfortunately, I work with many kids with diagnoses that no longer fit but are stuck on them. I won't do that to Landon, nor do I think not cooperating with a test should get you a dx. Just my 2 cents.  Landon is engaging, happy, funny, and does well in situations where they are not a lot of words involved. He has sensory concerns, and speech concerns, and I want him in a program to address those.  In NYS, you can get in with a label of preschooler with a disability and that is my intention.  I know he has apraxia and will continue to treat as such.  Now it's 4 more weeks till his meeting and I can't wait till we can move on from the testing and into a program that understands him.  21 evals and now 2 years off till the next  one... Thank you JESUS!!

Behavioral stuff I am working on

Things with Landon we are working on:
-frustration
-hitting when frustrated
-trouble initiating a task
-not wanting to try if he thinks he can't do it.
-trying to follow the sensory diet as closely as possible

Sensory issues:-- are these?
-peering over books
-tapping table with fist?
-opening the doors just to slam them
-too much peekaboo?
-squinting
-throwing toys if unsure what do
-occasionally rolling/spinning toys, especially when unsure of motor planning

This week: Speech eval and OT eval.

I am hoping to qualify for :
5 hours per day of an 8:1:3 program, integrated setting
4x 30 minutes of speech, pull out- individual
2x30 minutes, OT, pull out- individual
2x30 minutes, -PT, one time push in, one time pull out, individual
ESY

HAPPY WEEKEND... my mind doesn't leave my kids.  I will be glad when the testing is done and his meeting is 6/4.

Logan starts speech next week too... He only was approved for 12 visits in 4 months, because he eats all kinds of foods now and not self feeding is not keeping him from gaining weight.  Welcome to the system of giving less is better! blah.

Blogging/apraxia group friends

One weird benefit of going through the process where your son does not develop alongside the milestones society sets up, is meeting new friends.  My friends here in Syracuse are a few from highschool, some work friends, and some other friends I see infrequently.  I am so busy with my kids, and I trust very few people to watch Landon, since they don't know what he is saying and I don't want him frustrated without me there, that it is hard.  I have talked to probably 5 friends I met on my apraxia page.  What a relief.  Some of their kids are talking a lot now; some have not spoken a word, but we are all united in that feeling of worrying about your child and trying to figure out a way to help.  It's that feeling of utter sadness that kind of stays with you even after  a good night's sleep.  It is hard to explain.  It just does not feel good.  But there is pride in hearing a new word, or sound, or learning a difficult task. Someone blogged today about trying new things that are hard.  My son is not that good at this.  Now he knows he can do puzzles, so he will try new ones.  He JUST learned how to use a spoon, so he seems a little more willing; however, today he scooped too much and it was falling off the spoon and he was screaming.  he can't use the second hand to put the rest of it up on the spoon.  As Landon's PT said the other day, he is not a "tryer."  I am not much of a tryer. I hope he did not get that from me.  Alex put him on Almond Milk, just because it's healthier and I refused to try it.  I am not good at that part of my life.  I avoid things too, especially that are difficult.  So does Landon.  I get him.  I get a lot of the other mom's I have met.  I get the struggles their kids are having.  I also know together we will all make it through this.  I feel comforted in that. 
Have a nice day.

I was raised the right way

I have so much to say lately about the value of others' characters.  I need to get it all out there, but not yet, but I would like to say thank you to my parents for raising me the right way.  I can handle it all.

Progress

My "normal" is tough sometimes.  It involves being at the playground and listening to every kid talk besides your own.

It involves reading facebook status after facebook status about the cute things everyone else's kids are saying.

It involves dropping my baby at daycare and seeing the looks when he can't say goodbye to me.

It involves the constant texts from his therapists while I am at work about if he had a good day or bad day, was frustrated etc.

It involves picking up this little red composition notebook every single day from daycare and making sure to write and comment on each part of his day.

It involves realizing my own child is going to have an IEP.

It involves being scared to death about the next eval, a stranger coming to judge my sweet little boy.

BUT.... most people take things for granted.  Their child could say mama by 15 months, could imitate easily, they don't teach any sound productions and new words are just picked up.

There is a sweet joy in knowing that I could teach my son to say a sound or word, knowing how hard he is working.  There is joy in everyone saying wow he is making progress, or how much he tries.  There is joy in knowing that he will get the help he needs and it won't fall on me all the time.  There is joy in hearing Landon say "I do" as loud as can be, looking right at me, smiling, knowing he said it correctly.  You can't take that away from me.  I love that kid more than life.

Landon just finished his second session at Gebbie, which is a clinic at Syracuse University.  I go once per week for 45 minutes.  I get half off since I take student interns from SU every day, so that makes it worthwhile.  Landon went from a high of 18 approximations last semester, to a 50 this week.  Although higher unintelligible and maybe /du/ for book isn't what you would count as a word, for us, it shows wonderful progress.  I am proud of my "not so typical but absolutely perfect" boy.