Oh How Far We've Come!

Life with our kids seems to zoom by doesn't it? Yesterday was one of those types of days that reminds me how far Patrick has really come.

I have a small family. I am an only child and most of my extended family lives out of state. Except 2 of my cousins and my one grandmother. My one cousins family we are extremely close with and we frequent their house quite often. Their house is made up of my cousin and her husband and their 3 girls, 3 cats, and one very loving doggy. My cousins family has no shortage of friends and their house is always hopping with people. Teenagers, tweens, kids, adults all going about in typical normal everyday fashion. Chatting in the kitchen while cooking, playing video games, laughing, joking, watching tv, running around, dogs barking. In Patrick's world, this is NOT fun. All the noise is enough for him to run right back out the door and into the car.

I remember one summer when Patrick was 3 year old, summer 2011, he was at his worst, we went over to her house for a birthday party for my younger cousin. There was EASILY 30 people there. Music was playing, kids were running around, adults encased in chit chat. Patrick was over whelmed the moment we got there. BUT we pressed on, saying HI to everyone. I hate this part. Everyone LOVES Patrick and would expect him to say HI back or even look at them and it never happened. Multiply this x30. There is already a pit in my stomach. My cousins kids always look forward to seeing Patrick but when he wouldn't interact with them, of course, they moved on to their friends and honestly I don't blame them. Bless my mothers heart she would always try and take him, to occupy him, so I could go and chat, have a drink, or just feel normal and socialize but it would more times than not ever work and if it did maybe it would last for 5 mins. So Patrick and I would press on. He would want to watch TV but honestly I never wanted him too but I would allow him sometime, just to settle in to his surrounding. So there we are sitting inside in the middle of July, FUN! BUT we pressed on.

Dinner time... OMG my cousin is the best cook... but Patrick would already of had dinner and bless my mothers heart again, she would always offer to look after him so I can eat. BUT again most of the time it wouldn't work and Id be sitting inside (noise was still too much for him) with Patrick eating my dinner, while everyone would be outside socializing and having fun.

I longed for company but nobody would of known because I would put on the best face possible and smile and answer questions with "no we are alright" or "it's ok". A part of me wished someone would see through my wall and just join me in Patrick's world. BUT no one ever did and once again, I cant blame them. Sitting inside watching Gabba vs socializing outside.. hmmm.

Than the inevitable, the meltdown of all meltdowns combined with my exhaustion equaled us leaving. Always before dessert, always before presents, ALWAYS. I love my cousin dearly and always dreaded telling her we were going. At first she was fine with it and would say "I understand" and give me a smile but after a while of this ALWAYS happening, she started to get disappointed.... ya join the club. It went from "I understand" to "You never stay" and this time when we got in the car I lost it. I cried and cried and cried and yelled at my dashboard.

All the frustration, the longing, the wanting, the sadness, watching all the kids playing and laughing. Watching the other kids playing with the other little ones bc they play back. Wanting soooooo much for patrick to experience that. 3 years of that just boiled over that night on the 45min drive home. BUT nobody knew, nobody would of really because it never showed, I never said anything.

Fast forward to yesterday, 3/17/13, My cousins husbands birthday. Now Patrick as of late has been enjoying being at her house, strange but VERY nice, BUT we have also not been over on a busy night with more than just the 3 kids, a friend or two, and my cousin since the early summer. Today there was about 10 people at the house. Since it was a Sunday, it was low key. Patrick walked right in, said HI to everyone and went right into the living room were the NASCAR race was on. HE LOVES NASCAR. He jumped onto the couch and was happy. It was nice. I was able to roam around, say HI, give hugs, talk, HELP, with no worry of what Patrick was doing. I poked my head into the living room a bit later and he was playing ball with his 12 year old cousin. I went back to the kitchen. Poked back a little later. He was cuddling on the couch with my cousins husband. AWESOME.

Time for dinner...

 With out thinking I set Patrick at the table with his dinner and we waited for everyone. All of a sudden I hear... "wait we don't have enough settings, Lisa I didn't even think of Patrick joining us". This was not a common thing and actually the first time ever he joined us for dinner at the table. As he is usually too overwhelmed to even sit still, let along tolerate it. BUT there he was, sitting very nicely with a smile on his face. So dinner proceeded, all of us a little more squished because of the extra setting but very happy because Patrick was with us. Dinner came and went with out incident. He actually sat for a long time after he was done with out any problems. He was smiling and laughing and you could tell he was very proud of himself.

We stayed for presents...

We stayed for dessert.....

Now here comes the moment. The moment that, as a mom to a "non-typical" child, is the best! MEMA (cousins husbands mother) made this UNBELIEVABLE looking cake. I mean this thing was FAB! After I tasted it, I praised her. She replied "you never had my special cake? I make it ever year". I think and think and think. I would of remembered this cake for sure and answer "no". I look up to my cousin and say "because we are NEVER here for dessert!!" It was a revelation! It just really dawned on me how far my little man has come. As he is sitting there eating his favorite crunchies and smiling back at me. My eyes start getting teary. I have a huge smile on my face. We did it! We made it through the party with out even trying! It was seamless the day, no worries. It felt soo good! AMAZING actually.

It is crazy to think of all the work my son has put in the last 2 years. How hard he tries and how he does want to join into everyday events but sometimes he just can't. I wish I would of taken a photo of his proud face smiling back at me. He knew... he knew how big that moment was for him and I. He knew what he had accomplished. As we weren't the last ones to leave last night, we weren't the FIRST! That in itself is something to celebrate. 

  

Keeping Your Cool....

So every year I take Patrick to have photos taken at Target for St. Patrick's Day cards. Now it being 3 weeks before Easter, it is not that crazy there yet (thank GOODNESS) and we are able to wait peacefully for our turn. This is great for Patrick because he has major problems when children getting upset. So of course they are running behind and of course we get there 10 mins early... so we had about a 45 min wait.

Patrick goes and picks out some books and is honest to goodness happy and content, which makes me happy and content and able to look outside my bubble of Patrick. I notice two moms that seems to be sisters with 2 young kids. I'm going to wager a guess that they are about Patrick's age, 4. One of the little boys OBVIOUSLY doesnt want to be there and OBVIOUSLY doesnt want to put his Easter suit on (what boy really does anyway).

This is how the conversation goes...

Mom (yelling): "PUT YOUR GOD DAMN PANTS ON NOW"

Boy: "I don't want to"

Mom (still yelling): "I DONT CARE WHAT YOU WANT"

The boy says nothing, just staring a blank stare at mom.

Mom (yelling louder): "PUT YOUR DAMN PANTS ON, STOP ACTING LIKE A BABY"

Boy still doesnt say anything but you can tell his eyes were filling up with tears

Mom (totally losing it): "IF YOU DONT PUT YOUR FING PANTS ON NOW, I'M GOING TO SLAP YOU!"

Now everyone is watching...

Boy: "NO, DONT HIT ME!"

Boy tries to run away and Mom grabs his shirt collar and the boy falls to the floor. Now the little boy is a mess, sobbing and sobbing. My heart is breaking. The mom than scoops the boy up takes him down an aisle and smacks him, still yelling horrible things.

At that time we are called in.......

On the drive home, that incident really got me thinking. I didn't want to judge the women because as a parent to a child with special needs, I know how that feels. I also don't know anything beyond what I saw. What was going on before she entered my extended bubble? Was she just a stressed out, at the ends of her rope mom? Is the boy really a brat and this was just a tiny bit of what she had to deal with on a regular bases?

Who knows?!?!?!?!?!

But the question arouse....

Regardless of the circumstances....

Is that how any mother should talk to their child??? No, absolutely not. Than it got me thinking further. Is this one of things Patrick has taught me? To be patient and to us kind words, even though I'm at the ends of MY rope?

I know there are PLENTY of mothers out there with typical kids that would NEVER EVER EVER speak to their children in such fashion but there are those few that just lose it. I could never lose it and take it out on Patrick. GOODNESS to me that little boy was being a TYPICAL 4 year old. Us mothers to DXed kids crave for that typical behavior. We crave the "NOs" and I would die if Patrick actually said "I dont want to".

Does having a special needs child make us moms more tolerable of bratty behavior? Does it make us more tolerable to stubborn behavior? Is our rope just that much longer, so we dont lose it?

I know what you are thinking... "Like she has never lost it?!?!"

Of course I have BUT I cannot talk to Patrick in that fashion or even rise my voice because he will melt down and Ill lose him completely. I have to explain things in a gentle, calm voice. I have to get down to his level and let him know I understand. As I do make a conscience choice to, in reality I HAVE to. There really isn't any choice to go down the nasty road. Even if I do slip down it, I have to run as quick as I can back up.

I wonder if I had a typical child, would I ever lose it like the mom at target? Well forget her because I KNOW I would never hit my child, but would I still be able to keep my cool? See there IS a choice there. Even if I'm completely in the RED and smoke is coming out of my ears, would I make the right choice? Would I make the choice not to yell or become nasty? Would I stay calm and even? Would I still get down to his level and let him know I understand?

See having a typical child, comes with typical expectations of behavior and understanding. Would I just expect my child to behave regardless of what is asked and when it doesn't go as planned, do I get angry straight away? As I do expect good behavior from Patrick all the time, I know that is not reality and so when it does happen I guess I'm more prepared? I don't know I guess I'm just rambling on now.

I guess what it all comes down to is, is that I would like to think I'd still be the mom I am now. In reality though Patrick has TAUGHT me all of this. Patrick has taught me to be more kind and patient. He has taught me to roll with the punches and to make things work. He has taught me to expect the best out of him but also know when the best is just not available, take a breath and make a new best for that day. He has taught me to look through his eyes and to understand his world and why certain things might not work that day. Before him I viewed the world in such a different way. Not in a bad way... just different.....


Patrick 3/09 His First St. Patrick's day :)

IEPs, Quarterly Reports, Evaluations, and everything in between....

Haven't blogged in a while. Mostly I like to think that is because everything been positive and, lets face it, we blog when things are negative lol.

After receiving Patrick's quarterly report from school, it got me thinking......

With our children, when things are good... they are good. BUT when things are BAD, man it sucks! Patrick has been in EI (early intervention) since he was 16 months old and I have received many upon many many evaluations and reports from countless therapists and psychologists through the last 2.5 years. I remember getting my first evaluation from a psychologist. It had the generic beginning...

"Patrick is a very pleasant 16 month old boy. blah blah blah... " As a parent, you like all the fuzzy sunny stuff about ur child. Your heart is high....

Than it got into the nitty griddy...

Patrick didnt not complete this....

Patrick didnt not attempt that...

Patrick got easily frustrated...

Patrick showed signs of stress...

Patrick had no eye contact...

Patrick couldnt do (blank) task... x10

Patrick couldnt sit still...

Patrick didnt acknowledge anyone in the room...

Patrick didnt respond to his name... 

Patrick mouthed objects...

Patrick threw testing materials...

Patrick hit himself...

Patrick had zero interest in toys/ "playing"...

Patrick had zero language...

And than your heart sinks..... This IS my child. As I agreed with everything that the psych wrote, it still sucks to read.

"OK, well at least bc of this, he will be getting the help he needs... AWESOME" I was able to push the negatives aside and move on. That was 2.5 years ago. 

So we began our journey through EI and of course there was improvement and of course I put a silver lining on everything. I could only see the positives in Patrick and as long as he is improving, IM HAPPY. Until another report came my way. They always had the same laundry list of "didnts" and "donts" and "refuses". Of course they changed a bit but still were PACKED with black and white negatives... and I would always cry.

 " For every negative comment, it takes 1,000 at-a-boys to erase that one negative one." Dr. Phil

Isn't that true!

So I stopped reading them. I know my child. I see him everyday. I sit in on EVERY therapy session. I see what he has a hard time with. SO why do I NEED to read about it on a piece of paper? Read all the negatives. All the things he is having a hard time with. All the things he is NOT doing. Its like a slap in the face, every so months when those papers came. SO why would I subject myself to all of that?

It doesnt help my son, if I think of him in negatives. I understand the purpose of these reports.....I do.... and I understand if it didnt have negatives, he wouldnt get the help. Because, lets face it, he needs it.

Now that brings us to current time and once again I get a report in the mail. This would be the first report I have ever gotten from his preschool, so I began to read it with caution. It had the same generic beginning but for ONCE it was filled with positives.

WAIT?!?!

So I read through OT, than PT, than Speech... and before I knew it, I had read through the whole thing. Something I hadn't done in 2.5 years.

It was refreshing. Honestly.

Why do words from professional mean so much? Even though I had known he has made great strides in school. It was nice to read.

What is it about these papers that hold so much worth? Enough worth to makes us bummed when it is bad and beaming when it is good. We know our kids, we are involved parents. We talk to there teachers and therapist, get updates on a regular bases.

Lets not hold worth to these papers... Lets just enjoy our kids. Lets give thanks for the process, for sure, but there is no need to let them make us feel like crap. We put enough pressure on ourselves about our children. We dont need a professional to just recap it for us every 3 or so months!

The little things :)

Happy Monday everyone!

Being able to appreciate the little things in life is a fantastic gift to have. Our lives are soo busy with our children, that we tend to miss the small steps and even take them for granted.

That is one of the benefits to having an autistic child. Autistic children's small steps are HUGE. One of the gifts that Patrick has given me is to TRULY appreciate the little things in life.

I remember a couple years ago, Patrick and I were at a play group with 99% typical kids. At this point Patrick wasn't formally DX and I still was in the "my child will grow out of this" la la land (which I think all of us have been at some point). These kids ages ranged from infant to about 5 years old, with most of them being 2 or 3 years. Now what are the typical "complaints" parents have when there child is of that age?

"They just learned the word "NO" and it is driving me crazy"
"I miss the days when they didn't talk at all"
"Only if they listened"
"They don't sleep long enough"
"They are not eating there veggies"

The list goes on....

Back to the play group. I was sitting and talking with a mom and she was telling me about how her little girl (super smart, sweet sweet sweet little girl) was talking her ears off and in a common way she said "I miss the days she didn't talk at all, haha" or something like that. As I replied, jokingly, "I wish Patrick talked!" with a laugh at the end, a light bulb clicked in her head as in.... wait... I should be thankful she talks. As this was not my intention and we were making small talk, Patrick quickly taught this mama to be thankful for a speaking child.

The little things...

I get caught up at times with "typical" behaviors, I think we all do. We went to a train show yesterday and it was magnificent! The display was off the wall and Patrick LOVED it. As Patrick is jumping his little butt off watching Thomas, James, and Percy chug around, I notice the other parents sitting back while their child was pointing out things. "Look mommy this" "Look daddy that". AND there parents don't even know how precious that is, how special that communication is, how... for a lack of a better word, fortunate they are to be able to share those moments in that way. 

I feel that every parent knows that they are lucky for their child's presence, period. Whether they are "typical", autistic, physically handicapped, or purple. BUT do they really really reeeeeeeally know truly how good parents to "typical" kids have it?

They have no worries doing outings.. well besides the typical worries. No worries with big functions. No worries about family get togethers. Birthdays are seamless, Christmas is fantastic, "fitting" in is not a problem.

Outings make me nervous, I have to plan every step. Do I have EVERYTHING and ANYTHING for him, Blankie, paci, itouch, mobigo, mum-mums, enough juice, books, more mum-mums.... because if one is missing that is the end of it. Forget about birthday parties for friends. I have to think 10 steps ahead to make sure he doesnt have a meltdown in the middle of "happy birthday" or that just totally loses it in the bounce house. Christmas... hmmm... well he hates opening presents and still has no concept of a "present", so honestly Christmas is just another for him.

Now I dont want to turn this into a Lisa pity party or anything but honestly this has been bugging me. Everyone one of us has had the "they are lucky" thought. Whether it makes you feel the sh*t for saying it or not. I have!

I wouldn't trade Patrick for 1,000 "typical" kids or 1,000,000 "typical" moments though. Patrick makes me truly and honestly appreciate the little things. How special every moment is and how, as a society, we move waaay to fast and get caught up in it all.

Lets make an effort to take note of 1 little thing our child does in a day and truly thank them for it, praise them, hug them, make them feel like you really ARE watching. With out that, what do we really have?

All With Good Intentions....

So as the Christmas season is upon us, all this special stuff comes up for our little ones. Pancake Breakfast with Santa, Holiday light parades, Tree Lightings, pictures with Santa, special shows, etc. I was at work the other night and one of my co-workers gave me a flyer to a holiday train show at a doctors house that works at the hospital. AWESOME! As I really dont do any of the above with Patrick, he LOVES trains and I figured this would be right up his alley.

Now, I had envisioned an awesome train display in this doctors basement. The kids would be free to look around and enjoy the trains running. I envisioned Patrick having a BLAST! So I dressed him in his I love trains shirts and his conductors hat and off we went.

He was in a great mood when we got there, tummy full from lunch and everything. This house was GORGEOUS and like I envisioned the display was in his basement. We walk down and there are two rooms. One big one with a train table and two small train displays running and a smaller room.... this should of been my red flag. The smaller room had a HUGE table set up with a magnificent display. The man had EVERYTHING! Every little knick knack for a train display was there and everything moved. So we all packed into this room, as per the doctors orders.

WAIT A SEC! The trains aren't moving and this place is getter smaller by the min. People keep packing in and packing in. At this point we are crammed far from the door (other red flag) and Patrick is starting to get antsy... he wanted the trains to move! Now the doctor starts a little speech about his trains and blah blah blah.

Patrick is now biting his shirt and I'm thinking.... once this thing starts he'll be happy, just wait... hold out!

So he starts the thing! WOOHOOOOOOO! Patrick's eyes are so wide taking everything in. This is great! Everything is spinning and lighting up and the train is zooming around. He is instantly HAPPY!

BIG SIGH OF RELIEF!

Than the train stops..... oh goodness..... and the doctor starts "telling" a story about how the train needs to pick up this and the train needs to drop off that. All fine and good, just get the train moving again, is all Im thinking. Patrick doesnt understand any of this and is now whining. He just wants to watch the trains. So the train moves for a min or two and it stops again, doctor "tells" a story and the train moves again. This goes on for about 10 mins (seemed an hour lol).

Patrick is now crying.... Just run the stupid train!

Now for the Pièce de résistance....



The lights turn off... all the lights. It is pitch black. Patrick is now clinging to me, totally over whelmed.

Lets recap the situation for a sec....

Small room
No space
Tons of people
It's HOT
He has no clue why he just can watch the trains run
And there is NO escape routine, unless I mow over 20 people



AND NOW IT IS PITCH BLACK... sigh


The doctor now starts "telling" another story about how they get the lights back on... just shut up and turn them on is all Im thinking at this point... I got a scared, over stimmed child! So slowly all the lights are back up and Patrick is DONE! All he keeps telling me is "ALL DONE, ALL DONE" and all I can tell him is SOON.


Im sweating and beet red and Patrick is a mess. The doors open and he blots for the door and of course NOBODY it letting me through. Cant u see I have a mess of a child, god knows they heard him through this whole thing. GRRRRR


FINALLY AIR! Patrick than goes over to the train table in the bigger room and it is packed. No matter how big a train table is and no matter how many trains there are, there are NEVER enough. The train table quickly turns into the table of tears and that sends Patrick one step closer to the edge. So I quickly swoop him up and take him to another display were there is a Thomas train running around the track.


PERFECT!


Well at least until he wants to touch the trains.......


STICK A FORK IN HIM! Tears are running down his face, snot is running out of his nose and he is bitting everything is site.


sigh***


I had such good intentions and so did this lovely doctor. All I wanted is my son to have a fun time watching trains and all the doctor wanted was to show off his trains and to put a smile on kids faces.


My poor son fell asleep the MOMENT we got into the car and I feel like a witch bc I took him.... ALL WITH GOOD INTENTIONS.....

I Love Him For IT!

I love him for the mess he makes

I love him for resisting cleaning it up

I love him for how dang smart his is

I love him for not showing it

I love him for having to knock everything over

I love him for having to take every ball out of the bin and not playing with them

I love him for not wanting to do ANYTHING

I love him for always needing his blankie

I love him when he says "ight, ight" and even when he doesn't

I love him for dumping his nesting blocks and never wanting to build with them

I love him for his noise issues

I love him for making me realize that the commercialized parts of holidays/ birthdays aren't what is important ie. pumpkin picking, santa photos, gift opening, cake eating...

I love him for not wanting to touch a dog but loving to touch sting rays, bugs, snakes, and any other creepy thing.

I love him for his stimming jumping because it always makes me smile



I love him for his knowledge of electronics and the ease in which he uses them

I love him for his fits and meltdown, even when he bites because it IS communication

I love him for teaching me patience, love, honor, honesty, trust, empathy, calm, and belonging.

I love him for opening peoples eyes

I love him for working sooo dang hard at school

I love him for working sooo dang hard at home

I love him for giving in

I love him for loving car rides and always making it easy

I love him for loving his Gma and Grandpa

I love him for opening up to his cousins and letting them in

I love him for humoring me

I love him for loving his father

I love him for stashing and hiding his paci's

I love him for his love of water and how it turns him into a euphoric child

I love him for his limited communication and understanding when I dont understand

I love him for being my buddy

I love him for being picky and making me realize that it is not the end of the world

I love him for doing things on HIS terms and only on HIS terms

I love him for being him

NAET Further Explained

Afternoon everyone!

I wrote a post about how we found NAET, what it is, and how it has effected us a week or so ago. Now I have had some questions about the actual method of treatment and in this post that will be explained.

For those that have just joined me on this journey, here is the POST where I explain what NAET is and so on. 

**Just want to add that every NAET practitioner is different, not totally different but different. SO this is how ours does it.**

Before every appointment I pack a bag full of Patrick's favorite things, juice, and food. Waiting in a waiting room for any sort of time is challenging for any child, esp a "non-typical" child. I plan ahead a lot and try to think of anything and everything he will need, in order to be content and happy through the whole thing.

After a short wait, we head in and are greeted by Patrick's NAET practitionor, Ken Moss. He than will ask some questions about Patrick, how he is doing, anything new, any problems etc. Than he will muscle test him for what he worked to clear last week and if that is cleared than he decides what to clear now. If it doesn't clear than we work on whatever it was again. Here is a photo of muscle testing with a toddler. I couldnt get a photo bc you are invovled in the procedure. Again, this is not the "same" way Ken does it but the idea is the same. The practitioner holds a vial of allergen against the child while the child is touching you and than muscle tests using the resistant of ur arm. If when the vial is touch against the child, ur arm doesnt move, than it is not an allergy/sensitivity or (if you worked on clearing it before) it is cleared. If your arm gets weak when the vial touches the child than it is a allergy/sensitivity.

Here are the vials

 

This is an example of muscle testing with a toddler.....

Patrick has successfully cleared Gluten, amino acids, oats, grains, dairy, eggs, vit c, vit d, and magnesium. Last night he got treated for salt.

Ok back on task....

After the testing is complete, a vial (whatever he is trying to clear) is put in Patrick's sock and he "resets" his nerveous system/energy. This is done with this...

It is clicked up and down his spine.

 

When this is done, Patrick rolls over and sits up for the acupressure part of the treatment. Ken has a tiny vibrator and will press it on the top of the feet and between the thumb and pointer finger on the hand. Patrick likes to "help".

  AND WE ARE DONE! Well at least for the next 20 mins or so. We now sit and hang out for that time, while the vial stays in Patrick's sock. We have been doing this since Sept and believe me it has taken Patrick 2.5 months to accept this and let himself relax for those 20 mins. During this time Patrick cannot touch anything with a "charge".. like his FAVORITE thing, his iTouch. This was very hard for him to accept in the beginning, that mommy had to hold it but he has finally gotten the idea and he just chills out for this down time. We dim the lights and hang out with his blankie and paci :)

The vial in his sock...

 

So 20 mins passes and Ken come back in, tests Patrick for what vial was in his sock, gives us a diet to follow for 25 hours (sometimes 6 hours) and off we go :)

Example of the diet sheet....

At First I was put back by the diet. "What do you mean, Patrick cant have chicken for 25 hours?!?!?" It made me panic. You find ways around it. For us, we go at night after dinner. SO this way there zero restrictions placed on him with food for the rest of that day and plus I have found it helps him sleep. 

Anyway, if ANYONE has anymore questions, PLEASE let me know! I hope this was some what helpful! Again, this just make Patrick feel better. When Patrick feels better, he does better. The idea of NAET is very very simple, one you cannot deny makes sense.