Back in the groove

Finally, Mr. Mr. is back to school.  Usually the program he attends in the summer is off for two weeks in the beginning and two weeks in the end, but this year the calendar was off skewed so he actually had one week off in the beginning and three weeks off in the end.  Then of course Irene came, and this made a huge mess of his school.  Sparing you the details, lets just say something smelled funny!  So four full weeks of no program and we both were about at our wits end!

Tuesday off he went full of smiles and happy feet!  I can't believe how fast he is growing and that this will be his last year at the school he is in and then we have to make some decisions about his kindergarten schooling! 

I'm so happy that he keeps his teacher from last year who is young and energetic and AMAZING!  It truly takes special people to work with these children!

Progress reports for him is that he is now pushing himself up on his knees and elbows!  He is also drinking from a straw! I'm still battling what to do about him using his Binky, (which is only at night in his bed) and the whole baby food debate.  At what point is it not appropriate? As usual, I will allow him to dictate the transition!

Catch up

Yeah, I've been a slacker not blogging or keeping anyone up to date with what is going on with Mr. Mr. some weeks it seems that everything is same old, same old, then others feel like a tornado has hit. These last few weeks have been tornadoes all around but in a good way!

We got Mr. Mr. a new gait trainer, thanks to Tyler's Gift,   I had been looking for an alternative to his stander, which he seemed to loath!  At school we discovered that he really liked the pony trainer and could actually move himself around a bit on his own. Of course, now that we have one at home, he hates it!  Its more that he is tired and doesn't really want to work, so we save it for the weekends or holidays when he isn't in school.

 

We also have been doing a lot of bean and macaroni play. He loves it!  I still haven't figured out how to do it in the house without making a huge mess. This is such great stimulation for him, both tactile and fine motor skills. 

Not having a diagnois for Walker we really don't know what is going on in that head of his!  So its my job to make sure that he is being stimulated every which way we can think of. But it is a fine line not to over do it either.   Sometimes he just wants to be put in his bed so he can de-compress.  This bothers some people, but I know this is what he needs.  When he comes out he is happy and smiling again!  Since his bed is in the living room, he is not isolated and can still hear all that is going on in this crazy house!!

Most excitingly is that his glasses came! They are prism glasses and the sole purpose is to reflect light to others parts of his eyes to stimulate his brain.  The actually function of his eyes are fine, but somehow the signal to his brain gets interrupted.  These help stimulate those areas more!  At first he wasn't to sure about them, but now he is wearing them all day and seems to be really checking things outs!

 

Doesn't he look like a little professor? 

Good measures

One more item to add to my to-do list is find ways to modify our home to make life a little easier taking care of Walker.  When we bought out house four years ago, we had grand plans.  We knew the space was small but were convinced by a sharkey mortgage broker that in two years we would be able to refinance and add on.  Well, like the story of many other homeowners in our country, the housing market crumbled and we were left with a tiny two bedroom house, that was not valued at the price we paid for it.  So, after trying to sell it, arguing with the mortgage company here we are back in the too small house, sleeping in the living room with Walker's crib next to us.  

I made the decision to keep us all down stairs so that I didn't have to carry him up and down the stair case several times a day.  Not only would it have been killing my back, but also dangerous in case we slipped.  We have made due with the space we have, I remind myself, that people live in much closer quarters and survive.  The other issues however, are getting him in and out of the house in his chair safely and bathing him in our current bathroom.  

Our front door is not wide enough to get his chair through and the back sliding glass doors open up to a small concrete set of steps.  Currently, we pull him and his chair down back wards, but as he gets heavier this will no longer be an option. 

Our fantastic social worker, (have I mentioned how much i love her?) found us a non profit organziation that offers financial assistance to modify homes for children like Walker. 

Yesterday the consultation crew came and we were able to get some ideas of what is proper building code.  It was valuable information, like door ways should be three feet wide, and a ramp must slope twelve inches for every one inch of elevation.  They also pointed out that the if we install a handicap shower stall we would need to replace the bathroom vanity because we wouldn't have much room to get to the toilet. (pretty important I think) This is why these guys are called in.  They've done it and seen it and know things that we would never even think about. 

It is a slow process, but I am trying to look ahead and figure out what Walker's needs will be in the future, and how we can best accommodate them.  If you or anyone you know has done this before, I would love to hear ideas!

I want more!!

This morning I had a taste of what its like to have Mr. Mr. communicate his needs!  We were both very excited.  As I was feeding him his oatmeal I realized that he was signing more each time!  This was so AWESOME!  Sure his sign wasn't perfect, but I knew that when I repeated it and then feed him he was so happy.  He had a smile on his face ear to ear.  I can't imagine what it must feel like to finally be able to communicate what you want!  All I know if that I want MORE!!

Feeding time

As parents one of our many jobs is to promote independence in our children.  We want our children to one day be out in the world, independent and productive members of society.  When you have a child with special needs this takes on new meaning.  With Walker it is easy to forget that he is a three year old.  Its easier most days to do much of his daily care myself. Feeding him, wiping his face, changing him etc. Its hard to not want to coddle such a little love bug.  And trust me, he soaks it up!!   But he is a three year old!  And some days it comes shinning through that he wants and desires to be more independent!   And even though it may take a little more time and effort on my part, it is definitely worth it!

He had a grip on that bowl!!

still needs to work on the fine motor skills of getting it in his mouth!

It can be a little messy too!

Change of plans

Snow days, snow days!!  We have certainly had our share in the last three weeks.  The time home has reminded me is that Mr. Mr. has to be worked with on a consistent basis.  It also showed me that with him being in preschool, I feel very removed from the goals that he works on with his therapists.  Going from early intervention, where the therapists work with you at your home, to the preschool enviornment where the therapists work with him at school is very different for me.  On normal school days, when he gets home, he is so tired that we don't really do much "work" but being home with him on these snow days, has made me realize that i don't really know what is going on with him at school. Last week I scheduled time for today to go in and spend the day with him at school.  Wedensdays are his busiest days and it would have given me a chance to see each of his therapies and talk with them about some equipment I would like to get for him at home.

Mother nature had other plans.

So instead, I think I will try and convert his stander to a supine position (facing upwards) and see if he likes that better.

This isn't exactly Walker's stander but you get the idea.

Special Needs for Dummies

There are tons of books for parents to get them ready for the childbirth experience.  The holy grail of childhood books it "What to Expect, when expecting".  I studied this book front to back with all four of my children.  There was always some useful information that i overlooked or forgot at other times.  They also followed it up with the next few years of books which also line my shelves.  What I need, and can't seem to find is a "What to expect, when you have a special needs child" book.  There is no instruction manual. No real guidance when it comes to handling the quirks and perils of a special needs child.  I've even looked on line for help, to no avail.  How is a parent supposed to feel confident when dealing with their child when no one else is  confident to write a book on it!

At four am, this morning we were once again dealing with a boy who just doesn't want to sleep.  He's not hungry, not in need of a diaper change (we handled all of this issues like a pro) yet wasn't content to hang out in his bed by himself.  If this was any of my other children, I would allow him to cry himself back to sleep in hopes that he would tire himself out, or learn to self sooth.  However, this is not possible because he gets himself stuck in positions that he can't get himself out of, or he is saturated in spit and ends of choking on it. The hardest part is that his crib is right next to our bed, so unless we buy super heavy ear plugs, we are awake as well.  I've asked my pediatrician about this in the past, and he has given me round about answers, with no real direction. 

I'm exhausted and in need of some serious advice.... any takers?

Wordless Wendesday

Walker updates

It seems time is flying by!  Mr. Mr. turned 3 years old on Friday, and boy have we come a long way!  Its amazing to think that on the day he was born, we had no clue what our future would entail.  We had no idea all the trials we would be put to, and what he would teach us along the way!  Sure there are days when I am exhausted and short tempered, but one look into those big blue eyes and my heart melts!

He is truly loving school! We are seeing some amazing things happening with him too!  He is sitting up so much better, with much more trunk control.  We don't need to use his chest strap in his feeding chair.  His teacher reports that he keeps eye contact for the entire spelling of his name during circle time and he loves the alphabet song and book they made him.  The most exciting progress is that he is pushing up on his arms!  He hasn't figured out how to do both arms at the same time, but he is really interested in getting his top half up and looking around!  He will also get up on his knees but hasn't mastered both ends at the same time!  This is great progress and we are very excited to encourage him!  I can't wait until he is crawling around and getting into everything!! 

Happy third birthday my sweet boy!!

Hat tricks

This weekend has been a little difficult with Mr. Walker.  It seems he is cutting teeth and getting a cold!  What this means is that I have had to revisit my bag of tricks to keep him happy and eating.  In this bag are all kinds of things that I haven't had to pull out in a while.  The first item is a vibrator. Yes, a vibrator.  Don't cringe it was a demo back when I was a Passion Party consultant and it does not look like a penis in any way or was it used!  Its just the perfect size for Walker since its cordless and the right size for him to hold.  It instantly calms him down.  When he is all worked up, starving but not eating, this is what I bring out to distract him! We also have a vibrating hair brush that I send to school (thinking that they wouldn't be too crazy about a purple vibrator in the back pack!) The other item is his weighted blanket.  I have to admit, we don't use it nearly as much as we should.  I just forget that I have it since its kept in the closet in his room.  This fits nicely over him and me, which even makes me feel calmer.  He seems to like it when he is laying on the floor.  The only problem is that when he rolls over he gets all tangled up in it. Another sure fire way to make him "change the channel", is a vibrating Bert and Ernie head.  When you push their mouth, it laughs while vibrating.  This always makes him smile! Last but not least is the ole stand by Tylenol .  Yup, when i can't get him to calm down, when we can't figure out what is wrong, then we give him the dose.  I hate 'druggin' him, but honestly, he can't tell us what is hurting and often after a day or two we figure it out and it made sense to give it to him. The problem with this is that I can't gauge then if he has a fever or not. So we are going to ride it out (what else choice do we have), and hope that this is over fast!  Otherwise, I might just whip out the bottle of Southern Comfort.... for me not him silly!

Food issues

Some time ago, not exactly sure when but at least over a year ago, I decided to put Walker on a diary free, soy free and gluten free diet.  He had always had reflux, even when I was exclusively breastfeeding, and I was looking for some answers to his non gaining weight issue.  The diet seemed to really help him, once we got through the whole detox part. Lately, however, I have been questioning this diet for him.  I feel that he hasn't really ever moved past the baby food stage, due to his motor capabilities, but what things can we do to spice up his diet and maybe motivate him to start chewing? With so many restrictions its not as simple as just pureeing up what we have for dinner and giving him that.  Its a process to cook, mash and freeze his foods.  Some days I am just to plain lazy and opt for the ready made baby food jars.  However, my wallet really feels the impact of those days! I am wondering how I can slowly put these items back into  his diet and what the ramifications might be? I  just don't know where to begin!

Good and bad

Good days and bad days, we all have them! Some people have more than others, some have them all in one day with the pendulum swinging back and forth. While you are in the middle of a bad day, its hard to see the other side. When Walker is having a bad day, the whole house is having a bad day!  Its not because he is such a tyrant that it explodes everywhere, its more because we cannot help him figure out what he wants or what he needs and we are exhausted!

Communication is something that most of us take for granted.  I used to morn the fact that I have never heard him say "mama" or wonder if he will ever tell me he loves me. But now, I am fully understanding the frustration that he must have at not being able to tell me what he needs. Last night he was very tired, and we put him in his bed, but after thirty minutes of him rolling around in there I figured he must still be hungry or thirsty. When I brought him back out and offered him a bottle he drank it but was screaming the entire time.  He was throwing his body around  and stiffening his legs.  He was obviously really, really mad!  So I put him in his chair, mashed up a banana and offered him that.  He relaxed and ate, (but still was a little grumble)

These moments come often and sometimes everyday. I can see how frustrated he is and how mad he becomes when we don't know what he is trying to say! His speech therapist and us at home are working with him to do some simple signs or reach out for options, but I am not sure cognitively if he gets it.  I am worried that he never will!  What kind of a life is that? I fast forward ten years, and think, "man, how am I going to handle a teenager like this?" At the same time, I wonder, is he signing in his own way and I am not seeing it? Its hard when you are tired and trying all the tricks in the book to stand back and recognize if he is in fact doing something to tell us. I just hope with repetition and time we both can figure this out!  I would like more good days than bad for him!

Hoovering???

I've been a little quiet over here, and also on my other personality page, but the truth is I have just been in a real funk and didn't want to spread the germs!  Not sure what the deal it, well, maybe I do , but am not ready to disclose on the wonderful world web!  All I can say is that "this too shall pass".

On happier notes, Walker is off from school for two weeks, then everyone goes back and it will be just the Poo and I.  Hmm... not sure what we ever shall do with ourselves!  Ha!  But my first order of business once he is back in school is to actually go and spend an entire day just observing his class.  I never pictured myself a helicopter mom, but everything that I envisioned for him as huge pluses to going to preschool early, I am not sure is being done.  I don't want to jump the gun, especially since he is getting a new teacher and she will have to get the whole class in order.  So I figured if I can go in, sit in a corner and take notes, then go back with my suggestion I may not seem to pushy, (right?).  I just want him to be engaged more so then he would be if he was home. That is the point of school! 

I will keep an open mind, but I know and strongly believe that I am his voice! It is also my job to make sure that he achieves his highest potential and if that means I make some waves... so be it!

In need of some shut eye!

Last night we had a tough night with Mr. Mr.  it seems that this goes in cycles.  We have a few days of great sleeping when I feel that I might actually get a chance to sleep a straight five hours and then in an instant it all goes to pot!

Now couple that with Miss Poo who only goes to sleep by either nursing or being on her daddy, and you have a two very cranky and tired parents.

So what do i do? I read recently that there are good ages to try and sleep train when a child is developmentally in a better place to do so.  The next stage that they recommend that she will be in is the 12-15 month range when separation anxiety is at a low and their activity is at a high and therefore falling asleep may be easier.  So what is a mom to do?

We do the whole bedtime routine, but I wonder if I wait to late to do it.  We  I have tried the sitting next to her crib and then gradually move away night after night and that just seems to piss her off more.  We I have tried the all out cry it out method... and man....that means war!  Add to this a dad who doesn't like to hear her cry but doesn't really want to be in charge of the bedtime routine and it gets truly exhausting! 

So I am reaching out, to anyone, and I mean anyone, who can and will give me some tips as to how they got their children to sleep!  Please!  My brain is being eaten alive by the bed bugs!!!

First week of school

I know you all have been anxiously waiting to hear how Mr. Mr's first week of school went.  I thought about blogging several times during the week but it just didn't happen.  I thought that with him being in school I would have so much time on my hands, but guess what? three other children just came in and swooped it away!

His first day was a little rough for dad and I.  Daddy stayed home to make sure he got on the bus okay and we headed up the hill to the road for pick up.

I wasn't sure how he would handle the bus, since loud noises and quick movement sometimes startle him. But the lift wasn't loud and the bus vibrates with the engine so I think he liked it!

Daddy and I followed him to school to make sure that the ride went smooth.  The plan was that if he wasn't upset I would just leave and he wouldn't even know I was there. (One advantage to having a child with limited sight).  And he was fine.  Daddy, on the other hand had a hard time.

The day went well and his notebook said he did great.  

Tuesday I went and peaked in the window around 11:30.  I had already warned his teacher that I may be a stalker for a little while but to not be alarmed.  Of course when I looked in the window they had him underneath it so I couldn't see him.  At that point I was already at the school so I had to lay eyes on him. I signed in and went to the classroom door.  He was sitting in a feeding chair and they were getting ready to feed him lunch.  He was crying, but he usually is very impatient when it comes time to eat,  so I chatted with his Vision Therapist and Old Speach therapist then looked in on him again.  by this time he was chowing so he was fine.  

Every day we wait for him to get off the bus around 3 o'clock.  This is a long day for him!  He is exhausted and then sleeps for a few hours.  We are trying to get him into a routine to only sleep for an hour or so, otherwise he keeps us up until midnight!

Friday I checked on  him again around the same time and he was upset again.  I think he is just hungry, so I will send in a note suggesting to feed him more at snack which will allow him to go a little longer for lunch time. All in all, its good.  Friday morning Ramiah reported that when they were waiting for the bus to pick him up, Walker suddenly picked his head up and started smiling.  Within  two minutes Ramiah was able to hear the bus coming so he felt that Walker had heard it moments before and was excited to hear it coming!

Its hard letting go and allowing someone else to care for him.  I was never this nervous with Mason or Dylan, but then again I worked full time and didn't really have a choice. I know that they can give him more than i can and that it is the best thing for him.  I am just happy that he seems to like it!  It makes it a lot easier on all of us!

HBOT's ripple affects

Its been some time since I wrote about HBOT, we haven't been going to sessions because he has started school, and we went on vacation and its just been a hectic place around here.  Interestingly enough, though, we are still seeing the affects of the HBOT every day.  One of the largest impacts is that Walker does not freak out about water any more.

I have blogged about it previously, here. But I must say that things have gotten much better!  We changed up the routine for bath time, and instead of trying to get him used to baths, we switched to showers in his bath seat.  This cracks him up! He always took showers with daddy but as he is getting bigger, it has become more of a challenge (don't tell daddy, he'll never admit it!).  Also, with the amount of poop explosions that we have around here, I needed a way to bath him myself. 

The hugest impact of this was evidenced while we away on vacation.  Even though we were in Maine, the temperatures still reached 95!  We rented a house on the lake and finally on the fourth day of misery for Mr. Mr.  we gave it a try.  Guess what?   he loved it!!  This is HUGE!!!

He splashed, he kicked, he laughed and he sang!  It was awesome!  He stayed in the water for almost an hour, loved hearing the older kids play and just being cool.  We were a little afraid that we might have created a monster since it was still so darn hot! But he ate and slept well that night!  so it looks like I may just have to get that kiddie pool afterall!

Last week of EI

This is our official last week of EI, (Early intervention).  A lot of parents that I have spoken to who are making the same transition this summer state that they are so ready to be done. I can't say that I am!

EI is not just a therapy technique it is a way of life.  As your young child develops there are people in and out of your house at all times.  Depending on the level of intervention this could be one person or up to five or more!  Often they each come several times a week and its at all different times of the day.  For us we had five therapists, four of which came twice a week and one came three times a week.  In the beginning, it wasn't bad because we only had two, so we were able to ease into it.  As Walker's development continued to move slow, we added a few more.  Initially I was worried about how my house looked and made sure I was showered and presentable, but as the time wore on these people become family.

They have witnessed me un-showered, still in my pajamas and even bra-less.
They witnessed my dogs puking on the floor and running away.
They have been there when my older sons are fresh and not doing their chores.
They have heard arguments between my husband and I.
They have seen me cry.

But they also
have been there the first few days of Sawyer's life.
they have helped us celebrate two of Walker's birthdays
they have sat and drank coffee with me and discussed the ills of the world
they have watched us grow as a family and learn to understand the impact of Walker's needs
they have shared many laughs over the course of two years
they have become not only good friends, but family.

I will miss them all dearly!

Food issues

Gluten free
Dairy free
Soy free
No eggs

No onions

What do you feed a growing boy who can't chew? I am at a lost, and I feel that his rejection to food lately is because he is bored!  Yesterday I went against the diet and fed him a scrambled egg.  Actually, I had made it for Miss Poo but when she refused it and he wouldn't eat his pureed green beans, I gave it a try.  He loved it!  He was very happy mushing it around in his mouth!  And nothing bad happened, he seemed fine the rest of the day and slept well.  So what else do I give him? I have to admit, his diet is a lot of baby food, because... well... its  just a lot easier.  Yes, i am lazy, but baby food covers the main ingredients of his diet - vegetables, meat and fruit.  We add some oil for fat and calorie intake, but its hard.

What do people feed older children that cannot chew? Should I reintroduce these foods one at a time and watch for reactions?  We originally took him off of everything and his reflux went away and he was a much happier child.  I am so afraid of going back there! Soon he will be going to school, and I can't really send him there with baby food!  The whole point is to move him forward!!  Urghghghghghghhhh

Dream tease!

The problem with sleep is when you aren't getting it you get accustomed to the delirium, you hunker through with coffee and exercise, you just relinquish the thought of ever getting real zzz's, then the unthinkable happens.  You awake at 4 am and panic because no one has woken you up yet, then for the next three hours you wake and look at the clock wondering when the silence will end.

When the next night it happens again, you awake feeling so good!  You had forgotten how awesome a full 7 hours of sleep really feels!  You are excited and hopeful! Then WHAM! The next night they are up again, and now the problem is you were teased! You were reminded how it is to actually sleep uninterrupted!  So how do you go back again? I'm on my fifth cup of coffee and still feel like I am dragging ass!

My husband and I play a little game while in bed at night, we hear them get up and then its a stand off, pretending we are both still asleep, making sure not to make a move or sound until one of us caves and gets up.  then the game is really on, we take turns one after the other getting up trying to placate the children while essentially doing nothing really to satisfy the child.  I usually cave first, change the diaper and feed them, while he pretends he is still sleeping.  On rare occasion I will specifically ask him to get up and feed the boy child, but I know I can only do this about every three or four days, otherwise I am pushing my luck!

So how do we go back? I know that its within our grasp! 

Second thoughts...

I thought I was ready, I thought that with child #3, I knew the drill, was understanding about the transition, knew the benefits out weighed the negatives, but must admit... I'm having some second thoughts.

Thursday we went and registered Mr. Mr. for preschool, then we went and visited his classroom.  I knew he was tired, and really hasn't been himself these last few days, but wanted to get another feel of the room before we ship him off there in just a few short weeks.

The teacher welcomed us and the students were all sitting neatly in their circle time positions. I was able to fit the stroller on the end and we just observed what the kids were doing.  Mr. Mr. was just listening, soaking in the different sites and sounds.  Things were going good, until the kids were done with their calendar and began to sing songs.  These put Mr. Mr. on the edge.  10 little voices singing around him made him get that panic look on his face, but honestly he was holding it together, and so was I.  I usually get prepared to bolt,  to remove him for the stimuli as quick as possible, but even though I wanted to, I kept myself in check waiting... anticipating.  Things were going good...until... the big fat hairy spider song came.  This is the second verse that the children do to Itsy bitsy... not sure if it was the loud stomping and raised voices, or the change in routine... probably a combination of both.. but that was enough to put him over the edge.... so we left.

I know that it will be a change, and that he will get used to the routine and understand what is happening, and that it will be a process... but I'm still the mamma!  This is my baby!  I hate to see him upset, I worry that they won't know how to calm him, that he will be over stimulated and hate school! That he's too young, that when he comes home from a long day he will be extra miserable!

I don't remember being so worried when Mason and Dylan went off to school, but then again, I was working full time so they had been away from me since they were 6 weeks old!  Besides, Walker is different!  He is special!

I know this is normal and am not changing my mind.... its just nerve racking, I'm sure I will be following that school bus, tissues in hand....