Oops!

Again....I've let this blog lapse! Imagine that! That's how things work when you have 3 kiddos and a rampant case of ADHD (myself, not the children).

I've got some updates to post here in the next couple of days. Heck, if bedtime goes well enough I may even get to one of them tonight! Just wanted you all to know that we haven't forgotten you or the blog! We're just busy letting Henry be Henry and sometimes that makes for a busy mama. :)

Can you let me have my moment?

This post is going to step on some toes. I don't really care because it's not meant to bring harm to anyone. I'm only pointing out something that I have noticed. Something that us parents of children with autism (actually all parents do it, but all children aren't who this blog is about) keep doing to one another.

It was about a month ago, give or take a few days. Henry was having his therapy, which has been dropped to two nights a week. He is in preschool now so we don't do it as often. His therapist has a little dry erase board that Henry loves. She writes, he erases. It's their game.

On this day in particular the therapist had been writing words and Henry was actually saying them! Some were sight words, others were not. He even did a few 2 word phrases. As you can imagine, I was so stinking excited! Just like any excited mother (neuro-typical kids or not) in this day in time, I immediately posted about my genius son** on Facebook. Sort of kidding there. I didn't post that he was a genius, just what he had done and it probably had a million "!!!!" somewhere in the post.

Boy, was my excitement shot down with the quickness. I got a few yays and "way to go"s, but what stood out the most were the "It's typical." "Kids with autism do that early"s. To be honest, as proud as I was of my boy, my heart was broken and my spirit was shot down. Why? I don't know. I'll never understand what goes through other people's minds.

You know what though. It wasn't fair to me and it wasn't fair to Henry even though he may not have had a clue what was going on. Had my child been neurotypical, his first time reading would have been an amazing thing. There would have been cheers all around. Since he has autism though, it was almost as if I shouldn't have been excited. I should have just been expecting it because you know...kids with autism read early. It's nothing special.**

I won't let that happen anymore. Ever. I will from now on rejoice in everything that I feel needs rejoicing.  Screw what the books say about autism. My bubble was burst. I'm sure I've been guilty of bursting bubbles myself. The only way to stop it is for us parents to stop it. We have to stop acting like our children are different than others, we have to celebrate EVERYTHING, we have to stop telling each other how to do things.

Is it possible for us to connect with each other, support each other, and pat each other on the back without pulling statistics and research into it? Is it possible to just give each other our moments?

**If something had this by it in this post, it was sarcasm. No, I don't think my son is all knowing genius. But if I did, would you let me have that or shoot it down? Who would it hurt?

It's building up

Well, something has been building up. I had a post about something entirely different planned for tonight or tomorrow, but I've decided to write about our weekend and how it has felt. In our last post, everything was wonderful, but I can't lie and say that it is always that way.

The day after I wrote that blog post there was a different feeling in our house. Something on edge, something uneasy. Something building up. On the 1st and 2nd, Henry was just acting differently. I can't even pinpoint what it was. Maybe it was just mama instinct. He was a little more whiney than normal, but some of it was his new faux-crying (which I need to get on camera for you guys because it's awesome). Then on the morning of the 3rd, he was very upset. Everything bothered him, even the normal things that made him happy. We had his little sister's birthday party planned for the evening, but we hadn't begun to prepare yet so I don't think it had anything to do with it. Around 9am or a little after, my husband left to go pick up some inflatable bounce castles and things erupted.

I was cleaning up from breakfast and heard my smallest scream. This wasn't a normal "Bubby's bothering me" scream, this was loud. I looked over the bar and Henry had her in the floor pulling her hair. Normal brother behavior, yes. But he wouldn't stop. He kept going straight for her every time I let him go. He really had it in his mind that he was going to hurt her. It wasn't my boy. His eyes weren't the same. I took him into his room and tried to calm him down, but he kept trying to get out and get to his sister again. This all turned into the first time I have ever had to hold my baby down. It took 20-30 minutes of wrangling him before he finally wore himself out enough for me to let go. I would try to hold his legs down and he would scratch at his face and sit up with no effort at all in order to get to my face. So I had to hold his entire body to keep him from hurting his sister, myself, or himself. It was the hardest thing that I have ever had to do. The longest half hour of my life. He finally fell asleep for a couple of hours and all seemed to return to normal. He even did great at the party that night! Maybe he just needed some rest.

This morning was right back to the same though. He was fighting his sister and us. We went to church and I just had a gut feeling that I needed to stay with him and keep my eyes on him. Sure enough, he tried to hurt a kiddo there. He's smart about this and I don't know where he got it or if it's an instinct thing. He grabs these kids from behind and tries to pull them to the ground. It's awful and I'm left feeling like a bad guy over the entire situation.

The looks from other parents are so hurtful. The blank stares when you apologize and drag your son off to hold him down again are downright heartbreaking. The whispers that you catch the tail end of when you turn back around would bring tears if I weren't a strong mama.

We had another birthday party to attend today. I really wanted to go because the birthday girl has some pretty awesome parents and a few of the other guests are just as awesome. :) My intention was to enjoy the party and keep an eye on Henry. I did enjoy the party and what little small talk I could get in. I just forgot how much work it is to actually "keep up" with Henry. Sometimes I forget that he never stops, ever. He runs in his sleep! Maybe I had a momentary lapse in judgement. He only tried to get to one kiddo there and I was able to grab him up before there was even an issue. That's why I stay RIGHT with him. Not in the other room, not across the room. Right there. No one wants to have "that kid", the one who beats up all of the others. Nope, not even us mothers of special little guys want that. I won't let autism be an excuse as to why he hurt someone else. My goal is to just not let it happen in the first place. I was just apparently slow a few times today. Luckily, no one at the party batted an eye at Henry or at the mother who wouldn't just let her kid play. No one even seemed to notice when he jumped into the pool with his clothes on...yes, that was another slow mommy moment. I really enjoyed it, but it has been an exhausting few days. I feel guilty for sometimes thinking "I wish things were just normal for us." because I know that this is our "normal" and that I need to embrace it more and learn to love it, good and bad.

Henry starts preschool the day after tomorrow so I'm trying to relish these last few days and not wish that bedtime would come. I have a lot of fears about the coming days, but I'm sure that my sweet boy will prove my mind wrong once again and everything will go as smoothly as it can. At least I'll hope that's how it goes.

Surfers Healing 2011

I've neglected you again, dear blog followers. Life is like that sometimes. Those little things running around that I keep calling my children sometimes trump sitting down at the computer for periods long enough to type out a blog post. I may have found a way around that, but we'll see.

So, onto my post!

On August 22, 2011, Wrightsville Beach, here in the awesome state of North Carolina, was overtaken by one of the most beautiful things I have ever witnessed. Almost 200 children (all with some form of ASD), their parents, some amazing surfers from all over, and a giant group of volunteers descended upon that beach before the sun had even finished rising. They were all there for Surfers Healing, an awesome, wonderful, believe it or not life changing event.

What is Surfers Healing? I thought everyone knew. I had heard about it years ago, but I never thought much of it. Not until Henry came along anyway. Then I learned that not many people really knew what it was. Surfers Healing was founded by Izzy and Danielle Paskowitz. Their son Isaiah was diagnosed at the age of 3 with autism and, like so many other autistic children (yes, I said "autistic" and I realize this goes against other posts, but we'll go there another day because people change and sometimes they go in circles. Anyway!)......like so many other autistic children, Isaiah found peace in the ocean. Izzy, a former competitive surfer, got Isaiah out on his board and it made a tremendous impact. Thus, Surfers Healing: A Foundation for Autism was born.

This was an amazing day. We got there around 8:30 in the morning. I expected Henry to be in full on meltdown mode because 1) it was morning, my boy doesn't do mornings. 2) It was different. My boy doesn't like different. But, there must have been a peace over everyone because there were no tantrums and there was no stress. We were a little early, so we registered and Henry played. I watched the surfers in the water. I don't think I would call it practice because these guys and girls know what they're doing. Maybe getting ready is a better way to put it. It was beautiful.

Henry played in the water until it was his time to surf. It took me a while to stop and realize how relaxed we all were. We didn't have to worry about the "what ifs" that go along with having a child with autism. What if he throws a fit? What if he disturbs someone? What if he runs over someone's belongings? Yep, ALL parents worry about these things, but throw autism into the picture and you have to worry about it constantly. It's not if they take off and run over someone's stuff, it's when they do it. Nope....no one here cared. I don't mean that in a bad way. They empathized, they understood, but there was just a knowing that no one parent here would be judging another. Our day was great from there, from that moment that I realized that we were going to enjoy a morning on the beach and nothing that happened that may be out of the ordinary, was going to be out of the ordinary. So we played while waiting for Henry's surf time. 

The event started out with a prayer circle. I watched everyone get in a circle. Then I watched as that circle kept growing and growing, and growing some more. I would have had to either stand way back or have a wide angle lens to capture it all. 

We enjoyed some more time on the beach, and then the 9:30 surf times were called. That was us! So, we got in line at the life vest station. Henry was still doing great. He didn't fight because he had to wait for something. Henry is just like his mother, we aren't a patient family. It's one of our shortcomings. He did great though! Then.....oh then. I realized that I wasn't going with him! *Gasp!* You mean they weren't going to let me hold his hand the entire time?! I knew this, but it didn't hit until then. He went with his first volunteer who fitted him with his vest. They then stood there while waiting for the next surfer to be ready. They played and sang songs. Henry loved it. 

It was time! Henry's surfer was ready and he was going to surf!!! Henry's surfer, Cari talked to him some and then they went out into the water. My little buddy was a natural at this! There were no tears and no fears. Luckily, he has been raised around the ocean. I guess that's a perk of his Daddy being in the Navy. Some children were afraid, but these volunteers were amazing with helping to calm them down and get them out there. Families drove for hours to go to this camp, so some of the children had never seen this big ol' body of moving water. I can't imagine what that's like, but I think if I weren't also raised around it that I would be scared to death of it too. Meanwhile...back to the post (my ADHD is showing!) Henry was in the water and on a board!! They caught some waves, they chatted, they laughed and had a good time! I think he was in the water for half an hour or so. At least it seemed like it. He had a blast! The board they were on said something about a surf school. He read it to Cari and they joked about it because he found it funny. 

He was in Heaven. I just knew that when he got out of the water that he would be so upset! He proved me wrong! He was in such a good mood that it just carried on and on through his entire day. We stayed a couple of hours longer until Henry started getting tired. Then we started home. He walked to the van, holding his Daddy's hand, still smiling and talking about "surf school". The entire ride home he smiled, occasionally letting out the biggest laughs ever. He was still on cloud 9. It didn't end there! It went on for days! In fact, here we are, well over a week later and we are still hearing about surf school. 

Surfing had some sort of impact on Henry that I can't explain. He is talking more. He is happier. He has slept better on most nights, needed less "apple ju squeeze" (that's apple juice, please to those that don't speak Henrenese), and just has this happiness radiating from his little body. It's amazing. I want to start helping this organization in anyway that I possibly can. Fundraisers (attending and possibly holding), plugging, whatever I have to do, I will do it. I want every kid with autism out there to have a chance to do this. I want to shout from the rooftops how great Surfers Healing is. I've gotten a pretty good start by telling everyone we know and every stranger that doesn't care about it. I'll be "harping" on it even more in the future. So get used to that. I've been looking for something that would draw me in and that I could get involved in. I found my something in Surfers Healing. 

If you're able and have it in your heart, please consider taking a moment and visiting the Surfers Healing website to take a look around. http://www.surfershealing.org Please consider donating to this amazing cause if you can.

Things that Autism has taught me

Having a son with autism has taught me many things. I want to have these things written down somewhere so that I may look back on them when I need to. Sometimes I get caught up in the negatives. I am hoping that looking back on what I have learned will help get me out of those slumps when they hit. This will just be a random list. It may, at times, seem like rambling. I'm sure you can forgive me just this once, right? :)


I have learned PATIENCE. A whole new level of patience that I never knew existed or thought only belonged to the Duggars. Years ago, I would have been the mom who lost her mind. Because of Henry I have learned that I do have it within me to patiently try to deal with things that come up.

I have learned ACCEPTANCE. Accepting autism was hard for me. I remember jumping into things looking for that magical cure that doesn't exist. "Not my baby boy", I thought many times. He will not live this life. Now I know that he does live it. He lives it every, single day of his life and so do I.

I have learned TOLERANCE. I'm still working on that one, but I'm getting there. I do still want to kill people when they make ignorant comments. I just don't think about it as much now. Who am I kidding? Maybe we should scratch that one for now. Let's change it.

I have learned that those who don't accept my boy are MISSING OUT. They're missing out on what a great kid they can be. Someday, when Henry is the scientist that discovers something amazing or the artist whose work sells for millions, they will wish that they were nicer and more willing to learn about him.

I have learned that GOD did not "do this to me" or to Henry. I did this. I know when my boy regressed and I know what caused it. I also know that it happened because I did not stand up for what I believed in. Its ok. I've come to terms with it and I forgive myself. Now, we only move forward.

I have learned that THERAPY WORKS. No. Henry still isn't at the point of communicating everyday things, but he is trying. He has so many words now. His receptive language and understanding is getting so much better. Just today, I told him that we pee pee on the potty and he told me "no no no potty". I'll take sassy if it's all I can get.

I have learned that my feelings will be HURT. Not long ago, Henry said "I love you" in a way that he really meant it. He said it to someone else. That hurt more than I could have ever imagined. It hurts that he is always an angel for other people, but when its us here at home, he hits and squeezes and kicks and screams. But then a good friend, said something very comforting to me and it was that....

I am Henry's SAFE PLACE. When the rest of the world expects a well behaved child and sneers when he isn't that. I am the place that he can go when he feels the need to break down. I am the person he can go to and cry. I am the person he feels the safest with in doing that. When people stare because he is shaking his head from side to side, he always looks up at me like he is looking for reassurance. Shake away, baby. Shake away. Mommy won't let anyone say a word.

So this is where we are

I haven't updated in ages. We stay pretty busy these days. Henry is now receiving ABA therapy with a wonderful tudor 5 days a week for around 3 hours a day. We are still doing the occupational therapy, but have knocked it down to 1 hour once a week and the CBRS (play therapy for cognitive and social-emotional issues) is now at every other week for 1 hour. By the time the weekend rolls around, all of us are exhausted.

Its all helping though. Mostly the ABA, in my opinion, but I'm not ready to drop the others just yet. Henry is saying a ton of words now with prompting and quite a few with no prompting at all. He identifies many objects now and he is requesting drink ("apple juice", everything is apple juice) and food (by saying "eat"). He also asks for cookies fairly often. :)

Just this week we wrapped up the assessment for the NC pre-k exceptional children's program. He was accepted into the program and will start this coming up August. I could have had him start on his birthday, but there is only a week of school left at that point so I don't see the need to start then. The IEP is made. He will receive a 1 on 1 assistant until he adjusts to the classroom because, as you can imagine, he was very overstimulated during the time that he spent in the classroom the other day. They will provide his occupational therapy there at the school so at that time, we will no longer be doing it here at home. I hope to continue ABA after school. If it is all too much, I will then make a decision as to what his helping him along more.

I feel that him going to preschool will help our entire family out. It will provide mama with a break during the day. Henry will be able to learn to enjoy time with others or just people watch, as he loves to do. He will get time to play outdoors on playground equipment. This is something that I haven't been able to do because I can't figure out how to keep up with 2 toddlers on a playground. They both run in opposite directions and they both climb the highest thing they can find! I will be able to spend a little more 1 on 1 time with Avaleigh. I'm sure by now she thinks that therapists are just a part of everyday life. My guess is that her little world might be thrown for a loop when there aren't people showing up all day to work with "them". Yes, she thinks everyone is here to see her! I feel a little guilty because I had plenty of time for just Abigayle and myself, and this will give me plenty of time for just Avaleigh and myself, but I'm not sure how I'm going to work in time for just Henry and I. I'm sure I will work something out though.

We also just started a new metabolic supplement, but not much to report on that so far since I just began giving it to Henry today. I guess we will know soon whether we were ripped off or not, but there's no harm in giving it a try. I'm not trying to cure my boy by any means. I'm hoping that this will make him have better days without so much anger and frustration. I will report later how that is working out for us.

For now, this is all I've got! One day I'll find that balance between blogging and real life, but until then, sporadic posting is enough for me.

Autism is NOT an illness

This is something I never thought I would face. I assumed that the world around us was at least knowledgeable to know that Autism is a developmental disorder. I especially never thought that I would encounter this with medical professionals.

This all started a couple of months back. It doesn't seem that long, but I guess ,in a sleep-deprived state, one tends to lose track of time. My boy isn't sleeping. By "isn't sleeping" I mean were getting a few hours a night with no nap about 99.5% of the time. He gets to sleep just fine. He cannot stay that way for long. I have tried everything, save for a weighted blanket which I will be hopefully making this weekend.

So today, I put in a call to his pediatrician hoping that they could give us a little something to get his body reset. It was a last resort because I don't WANT to medicate him, but this is beginning to affect his quality of life. He will barely participate in therapy because of being so cranky. He walks around angry with the world all day long. He is just exhausted. So is everyone else in the house. Its starting to take it's toll on everyone.

After waiting on hold for an ungodly amount of time, we finally reached the appointments line. The conversation goes a little like this.......

Receptionist: Thank you for calling JCC. Who are we making an appointment for?

Me: Henry V....

Receptionist: And what does he need to be seen for today?

Me: He is having some sleep issues, which I know are common with Autism, so I would like to talk with Dr. E** to see if we can come up with a solution. I don't mind having to wait a bit for an appointment because I only want him to see her.

Receptionist: Hold *phone transfers*

New Receptionist: Thank you for calling JCC. Who are we making an appointment for today?

Me: Which clinic is this?

New Receptionist: The sick clinic.

Me: My son isn't sick. He does have Autism and we are having some issues that I would like to speak with his doctor about.

New Receptionist: If its dealing with his Autism, then he is sick. He has to be seen at the sick clinic.

Me: *at this point I am a little bit taken aback* You're kidding me right? He ISN'T sick.

New Receptionist: YES he is. He has Autism. He has to be seen at our sick clinic or not at all.

Me:  What about the risk of him catching the flu or this awful stomach bug going around? I caught it 2 weeks ago from being in your office (yes, my insurance assigned me to a pediatrician...whole 'nother story there).

New Receptionist: Thats a risk you'll have to take if you want to see the doctor regarding sleep issues.

Me: No it isn't. Have his records for me within 48 hours and charge his account out of your office because we will be finding a new doctor.

___________________________________________________

This is the same office that ordered a skull x-ray instead of a MRI like the pediatric neurosurgeon suggested we have done at 2 years. Within 30 minutes, he had a new doctor and hopefully tomorrow, making an appointment won't be so hard. I will switch again and again until we get what we need.

Really though. Who in their right mind calls a kid sick simply because they have Autism? IT IS NOT AN ILLNESS. I honestly wonder by the tone of this woman's voice, if she thought she could catch it from him!

I ended all of this in tears, with a sweet boy who was actually napping for the first time in months. His tudor (which I hope to write about this weekend) had managed to get him to fall asleep because even though therapy is 3 hours, he was so exhausted that she wasn't getting anywhere with him anyway. Can she just move in with us?

This is not something that parents should have to deal with. Not in this day in time.

Transitions

Here we go! It is past time to transition Henry from the crib over to the big boy bed. Yep, we have been here before. He slept really well in his firetruck. Mommy got an awesome deal on it, and he loved it! Then, he learned a new skill. Opening doors. Once he figured that out, he wouldn't stay in bed. I gave up and put him back in the crib. He can climb out of it if he wants, but at night, he never does.

I think it may be a comfort thing. Maybe he likes the feeling of being closed in by the crib. Protected by it even. Maybe it keeps the bad things out for him. He has, in the past week, slept in the toddler bed once. I had to lay with him until he went to sleep. I won't complain about the sweet snuggles. :) Sometime through the night though, he climbed into his crib, but only after dragging his arsenal of sleep equipment and getting it in there somehow.

Sleep equipment: pillow, fringed blanket laid against left side of the body, sock monkey in the crease of the left elbow, cup in left hand, Daddy doll in crease of right elbow, and "the cowboy blanket" laying on top. The cowboy blanket is a hideous wool blanket that belonged to his Daddy. Its heavy and I assume that is what he likes about it.

I gave up and just started putting him in the crib again. I can no longer do this, as he is beginning to break it apart again. Theres probably something dangerous about him handing me a giant screw in the morning. I'm sure thats what the CPSC would say.

I will start by laying with him until he falls asleep. Gently getting him more used to it. Hopefully he will only climb to the (un)safety of his crib a few more nights. By next week I hope to have the crib completely out of his bedroom and replaced with another toddler bed. I will keep 2 in there so that he can move at night if he feels the need.

This is the most gentle way of forcing him into a bed that I can figure out in my mind.

My ultimate goal will be to get him and sister to share a room.  Baby steps, mama. Baby steps.

Night 1 (because in case you haven't noticed, I blog before bed at night and just publish the next day): It was horrible. But, we'll keep trying!!!

Judge Judy has nothin' on Mamas....

I have a lot of friends with children. Who am I kidding? I have maybe two friends that don't and that is only because one of them is a couple still expecting and another is a couple who has fertility issues. I'm often bombarded with emails, text messages, and the obligatory Facebook post about what wonderful things their children are doing today. I need to do this. I need to make it a point to share one new thing that my kids do every, single, day. I don't do it often enough. It is now a challenge to myself at before I sleep at night, to think of one good thing that each of my children did to make my day brighter.

Amazingly, this is now being mocked in the blogging world and Facebook alike. I feel like its becoming a bad thing to share milestones, and don't dare say that you are "blessed" because then you're a liar who pretends that nothing is wrong in life. Perhaps those people just don't want to share the "wrong", but instead of people thinking of it that way, they see it as someone's attempt at making life look perfect. So am I now supposed to post all of the crap things that happen in our house daily? My friends, I would clog your news feed and RSS like a barracks toilet on Mexican night at the chow hall. Want me to post only the good? I hate to say it, but on some days, I get in my slump and I see no good going on. OHHHH, you want a nice, politically-correct, mixture of the good and bad of life!! I get it!

Heres the thing about blogging. Your blog is YOURS. You post the good, you post the bad, you post them both and there you have.....I'll stop myself from breaking out into song here. Some people only post the good. On the contrary, in blogging and on Facebook, some people only post the bad. I find though, that I have those people on my news feed or my followed blogs for a reason. I am intrigued.

What I'm saying is that if someone wants to post their Happy McHappyFace all day, everyday, why are other mamas complaining about it? I assure you, they have bad in their life. They just don't share it with the world. And if that gives other mamas some sort of false sense about the blogger's life and their own, then so be it. We can't save 'em all. There are a few, well-loved by many thousands of people blogs out there, that I cannot stand to read. So, I don't read them. Don't read it if it the only emotion you get out of it is anger towards the person and their so-called perfection. We all know its a dream world, but hey....if I'm having a dream world kind of day, no one better burst my bubble. If you don't like someone's happy, don't taint it with your sad or angry.

I will continue to blog our days. Good days, bad days, whatever I feel like posting that day. Mostly good. Because I am blessed. I owe all of our days to God. When need be, I will praise him. I will even *gasp* praise him publicly. There are joys with Autism, not just the horrible things that people read and hear. My ability to see those joys are what makes me blessed. I'm praying that He will help me find the ability to share ALL of the good that Autism has brought into our lives.

Unless there is something that can actually be done to help out a fellow mama, why are we judging each other so harsly? We must be the warriors that we want to be in our child's life, whether they have special needs or not. We must show them that we will not make fun of others for any reason. Whether it be a false sense of what reality is or the doom and gloom kind of human. We must be the example of what we want them to become.

Autism and the "terrible twos"

This morning, my sweet boy is in his room, working on his new favorite past time, and singing a sweet song. I have no clue what any of the words are or what song he is singing, but a mama could get used to this. As he does this though, I can't help but to wonder when the next tantrum is coming. It won't be long. A page in his phone book will turn when he doesn't want it to, or a song will come on his radio that he doesn't like, or his sister will look at him.

All mothers expect tantrums, here, we live them. Everyone in the house is subject to it. Everything is everyone's fault. The tantrums here last an hour, sometimes longer. Redirection and ignoring just don't cut it when your child focuses on the one thing that pissed him off. We even get through with one screaming and kicking match, only to have Henry think about it an hour later and start all over again. How do you redirect a child who doesn't comprehend when you try to tell him or her that "its ok". You don't. You let them have a go at it for a little while, making sure the other children are not within kicking distance. You try to rock the child throwing the tantrum. You gently squeeze their chest or put on their compression vest if you can actually manage that. Personally, I let Henry throw a fit for about 10-15 minutes and then I try the other things. I feel that he needs to get some of that anger out somehow, so for now, at the age of 2, we just tantrum it out. Then, I pick him up and walk around while swaying. We sing songs (Mommy sings way off key). His favorites are "Froggy Went 'a Courtin'", "ABCs", "Firework", and "Boots".

I'd be willing to say that about 30% of our day is spent listening to or feeling the wrath of a tantrum. Know what? Most days, I don't mind. The good far outweighs the "bad". The sweet mutter of "cup" or a song of "I love you", makes it all completely worth it. :)

Doing it for Charlie

I know that I don't keep up with this blog well enough for my own child, but today I'm going to take a short break from sharing about Henry. Today I'm going to share with you the story of a sweet boy named Charlie whose life was too short. I'm going to tell you about his mother, who is on a mission to make sure that as many lives can be saved as possible.

This is the much-loved Charlie.

Back in October, baby Charlie became ill. He showed the normal signs that a child would show while sick: sleepiness, fever, etc. The doctors thought, just like most would, that he just had a virus. No one knew that Charlie had meningitis because most of the well known warning signs just weren't there. The rest of this story, I will let you read for yourself. It isn't my story to tell.

Let me get to Charlie's mom. Katy is an inspiring soul, someone who has come out of this ordeal as strong as she possibly could have. Her baby boy was lost at only 3 months old, yet she has become an advocate, a woman on a mission to turn tragedy into triumph, a woman who is going to save lives. And she is going to save those lives in more ways than one. On top of becoming an advocate for meningitis awareness, she has also continued to pump breastmilk and donate to her local milk bank. This way, babies who wouldn't otherwise have the gift of mommy milk, may do so through her.

Katy and her family have already begun to raise money for The Meningitis Trust (The Charlie Mann Fund) by having friends donate online and by putting together a fundraiser.

I want you to read this article in the Huddersfield Daily Examiner:  "Mum Katy Mann's Vow..."

I want you to go to her blog that she used as a starting point to write out what exactly happened: Blog

I want you to go here and to donate if you can: Charlie Benjamin Mann Tribute Fund

I want you to learn the signs of meningitis.

Because, like Katy, I want you to keep your babies safe.

I could write on and on about the days just before and after Charlie passed. His story affected a whole community of women, all from different places of the world. There were churches across oceans praying for this sweet boy and there were candles lit in more countries than you can imagine. Instead, I'll just let you read this family's story in their own words.

An Open Letter to Professionals

This was shared by a friend and it struck a nerve, so I thought I would share it here. :) Please visit this wonderful mama's (and author of this letter) blog at http://www.thecrackandthelight.com.

An Open Letter to All Professionals
Hello?


New teacher, or therapist, or doctor? Is that you?


Oh hello…


I just wanted to chat with you a second. To caution you. Or warn you.


Please, tread carefully.


You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?


The slightly broken, definitely bruised one?


Yeah, that’s my heart.


My slightly-broken, definitely-bruised heart.


Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…


You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….


You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…


But regardless of what you see, what you think, or what you believe, this is what you should know:


I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.


Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

MIA again

It seems that we stay busy most of the time. It's tiring, but we make it and I'm learning a lot. Were also getting ready to throw a little ABA in the mix, FINALLY!

Henry is making wonderful strides. He is counting to eleven now. He occasionally uses his words when he wants something instead of just going into a tantrum. It's such an accomplishment for us for that to happen. He now asks for "apple" when he wants juice and points to the correct PEC when he wants milk. Just today he said "cup" to tell me that his little sister had stolen his. They fight like cats and dogs, but at least there's something good coming out of those throw downs.

We also were finally able to order a pressure vest. Amazingly, I ordered it late afternoon and it was here within 3 days. I highly recommend Affordable Therapy Solutions to anyone who has children with particular needs. Nope, they aren't paying me to say that. I was just very impressed with them.

On another note, a discussion came up the other day that struck home with me. Well, not so much as discussion as a statement. Someone had mentioned that many times, warrior mamas come across as trying to recruit rather than trying to help. I totally agree with this statement, because I absolutely see it in myself. Just today I caught myself wanting to cry at the massive amounts of children that were pouring out of the immunization clinic, all crying and wiping their tears with one hand while holding cheap little choking hazards (stickers, not appropriate for a tiny baby) with the other. I don't want to push ANYONE not to vaccinate, but I want to make sure that every mother and father is educated on what can happen. When I try to say anything though, I know it comes off like I'm saying that "every child who gets a vaccination is going to have problems from it" and that's absolutely not what I mean at all. I'm not even 100% convinced if that is what happened in our family.

The only thing I'm sure of is that we went in for vaccinations and then landed in the Children's Hospital at Medical University of South Carolina because my son was having seizures and had several moments of complete unconsciousness and wasn't breathing in those moments. But you guys already know that.

The point I'm trying to make is that I think I've decided to take a step back from "warrior" mode at the moment and focus on us. Once we figure out what were doing and how we feel, then we can be a better help and advocate for others. Until then...not unless I'm asked. ;0)

How much can one kid take?

Where is the breaking point? When do things become too much? When am I doing more harm than good? 

These are all questions that I ask almost daily on our road trips to therapy. We are up to 4 days a week most weeks, 5 every other. Somehow I'm supposed to fit ABA therapy in too. I suppose, like a good mother would do, I'll find a place for it to fit in. When you break it up, our therapy doesn't even add up to much....a mere 6 hours a week at the most. It's the travel time, the waiting room time, the loading all three children up and hauling them around kicking and screaming time that makes me question my abilities. 

I have to learn to make time for all of my children, not just Henry. Let's face it, all of them are AFFECTED by autism, even if only one of them is diagnosed with it. I have a nine year old that loves animals. Why isn't she in some sort of club for that? I have a ten month old that loves....well, right now she loves most things. Why isn't she having playdates? 

In the next few weeks, I will be getting together with Henry's therapists to make a more set schedule. No more of these "work you in when we can" office politics. I will demand that we have a set time for therapy. I will demand that Henry's speech and OT be scheduled together in order to avoid travelling so many days in one week. These crazy schedules aren't good for him, my other children, or myself. If they can't accommodate us, I'm sure someone else can. 

Tonight, in the middle of the mother of all meltdowns I realized, THIS is the breaking point. Poor Henry sat in the floor and screamed, kicked, hyperventilated, and kicked some more. It wasn't a tantrum. He COULDN'T stop himself. Nothing would help him, he had to just get it out. As I held my baby there in my arms, in the floor and rocked him, I came to the conclusion that something has to give. We will not be stopping any therapies, but we will be doing a better job of coordinating our times. It's wearing my poor children out. 

Hopefully, in working out a new schedule, I can work on this blog a little more also. I realize it's been neglected from the get-go, but when it's blog time or family time...well, as scarce as it is, I'm going to choose family time over everything. :)

Cure OR Acceptance?

Yes, it is a hot topic among the community of us who have children affected by ASD. On one hand you have folks who have seen changes happen. A "cure" persay...something that made their children act, talk, react, and socialize like most other children out there. On the other hand, you have parents who are happy with what they have been given and say that there is no need for these cures.

I can see both sides of the fence. I'm just not sure where I stand on it. We did the gluten-free, casein-free diet for a while, but it was tough. We finally went off of the diet and Henry actually started doing better. So...I'm going to guess that gluten wasn't our issue.

I have looked into the biomedical research. It's scary. Needles and pricks and hyperbaric chambers. I'm just not sure I can put my sweet baby through all of that.

I've researched supplements. I may begin to use a few eventually. I have just yet to find a book to tell me about them all without the author plugging their own agenda.

As much as I would love for my son not to struggle with things in life, I just don't know that I can put all of my eggs in one basket to try to change what he is. I love him the way he is. Everything about him is awesome. So, for now I guess I'm on the side of the fence that is just looking for acceptance. Who on Earth knows where I'll be a month from now, but I'm sure that where ever it is and whatever we decide, that Henry will have the happiest of all lives.

Now....on to vacation. :)

Singing their praises

You know, we spend so much time in therapy that sometimes we forget to step back and look. Look for what? Well, is the therapy working? Every child is different so what one may learn from a type of therapy, another may not. Some children don't tolerate ABA therapy, yet when my daughter had speech issues, ABA was all that would do her any good. Play therapy wasn't cutting it for her. But we are currently trying play therapy for Henry because our insurance isn't all straightened out in order for him to receive ABA yet. Thank God our therapy is doing some good.

I noticed this yesterday while out. Normally a trip to the store is so stressful that I just wait for my husband to get home and either we all go or one of us goes alone. Not yesterday. I figured that it is way past time for me to figure this out. I decided to start with a quick trip and if that went well, we would add a little more. So I went to the grocery store just for one thing. It went great! Load back up in the car and away we went to that big department store....you know which one I'm talking about. That place can inspire meltdowns in the most composed adult. I put the kids in a buggy and headed straight for the bakery for a box of cookies, just in case ya know. Didn't need them!! Then I really pushed my luck and went to that big named club store. You know the one where you can buy a year's supply of cheesy puffs all at once! One little tantrum, but Mama was smart. She had put the aforementioned cookies in the diaper bag. Problem solved. :) Henry even sat beside of his little sister in one of the store's awesome buggies that has TWO seats up front! Who thought of that genius idea?! Normally he would have hit her or bitten her....or something. And then I would have had 2 screaming children in the middle of a store. That describes almost every trip for me anyway, 2 screaming children. But I had to man up and go and it worked out for the best.

This shows me that Henry has come SO FAR in these past few months. He not only handled going into public places well (which used to be a big problem), he handled going to several places well! No, not well. Great!

In the past few days he has also picked up on more words. He is now saying "Thank you. Thank you." in the correct context. It's the cutest thing ever. I'm not sure where he picked up saying it twice and sounding like a Las Vegas Elvis impersonator, but it's adorable. "Drink" is becoming more clear, as it "Eat". It's wonderful to have some communication. It makes things much easier when I don't have to guess at what he wants.

I'm so proud of how far Henry has come in a short time. It gives me hope that in the future (and maybe not that far off in the future) he will no longer be considered as someone with "severe" problems. Because in reality, he doesn't really have "problems" at all. He has quirks and WE just have to learn to work with them.

One day the world will understand. (A Mama's Lesson)

These are words that I never want to tell my son, but I know the day will come when I will have to explain someone else's lack of knowledge to him. Yet, apparently there are people in this world who still think saying things like "your child isn't average" or words like "abnormal" are okay ways to describe an autistic child.

People should know (so hopefully, those people will eventually find this blog and maybe learn from it!) that it is not okay to consider my child, or any other child, below average or abnormal. There is nothing abnormal about my son. What is normal? Who decides that? Meriam-Webster Dictionary defines it as : "conforming to a type, standard, or regular pattern." Well, no one in my family has ever conformed, so I guess none of us are normal.

I realize that we live in a time where most people have given up on being politically correct. I will be the first to admit that I've slung words around that I am NOT proud of and yes...sometimes things come out of my mouth NOW that I hate myself for later. It almost seems though, that sometimes people pride themselves on being as un-PC as possible. And then sometimes the person doesn't even realize it because the world has become so desensitized to everything. That isn't their fault. It's ignorance and you know what they say about that being bliss...

I try not to get angry when people say out of the way things. It does hurt, but I try to remind myself that they aren't in these shoes. They don't know. My fear is though, that they never will know because so many people DON'T WANT to understand how they make others feel. Sometimes I do get angry though and say things that probably shouldn't come out of a Mama's mouth (well, not until the kids are out of earshot anyway). But...

I guess, along with the very people that chap my hide sometimes, I'm still learning too.

A "No Therapy Allowed" Day

Henry spends so much time in therapy that yesterday I decided that we would do none. He would get to have a day to just be a kid. No Mommy standing there trying to get him to say words, no using his toys for motivation to do something, just playing. He didn't have to ask to get up into his highchair, I just put him there when he wanted. He didn't have to say "up" to be held, I just held him. He didn't have to say "drink" when he wanted his cup, he just got it. It was a completely therapy-free day.

As far as therapy goes, I would say that, by far, his favorite motivator is bubbles. He loves them. They calm him down, yet at the same time, we can use them to get a few words out of him. Mostly "bubbles", "more", and the occasional "please".

But not yesterday. We filled up the bubble blower, turned it on, and went to town! Henry loved every minute of it! All in all I would say that it was probably one of the happiest hours that he has had in a while. His smile was almost as big as his happy squeals........That's enough to melt this Mama's heart.

Well, Hi there

A lot of you already know me, for those that don't, just call me mama. That would be the name that I recognize the most. I may also answer to Tiff on the rare occasion that I remember who I am. I'm using this blog for my son, Henry.

You see, Henry was recently diagnosed with Autism Spectrum Disorder. According to the evaluators, he is considered "moderate to severe" on the spectrum. He was also diagnosed with a host of other problems, but those are issues that, in general, go back to the Autism. I had known in the back of my mind for a long time that Henry was Autistic, yet when that diagnosis was spoken aloud by a medical professional, my whole world fell apart for a few days. After wallowing in my own little tidal pool of self-pity for a few weeks, I decided that it was time for me to do something. It is time for me to be strong for my son. Time to be his voice until he finds his own. Time for me to stick up for him and every other child that needs it, so that they aren't teased anymore. Time for me to teach acceptance.

Yet, I've noticed in family members that the words "He's Autistic" are being said a lot. This is what I want, more than anything else that I've listed, to put an end to. Yes...he is Autistic, but if he could say anything right now I'm sure it would be "I'm Still Henry" . I guess it goes hand in hand with acceptance. I don't feel the need for everyone to know that he is autistic. I'm sure he LOVES being Henry because he is bright, intelligent, fun, happy, hilarious, and one of the best kids I've ever known...meltdowns and all. This is the place for people to see that Autistic children are still children. They still need love, not because you feel sorry for them, but because you truly love them. Love them like you would any other child, just know (without mention) that it may not always be generated back in the way that you would like. Sometimes I hug my son only to have him push me away, but I know that he loves me. He just shows it differently and sometimes not often at all.

I like to think that in Henry's mind he is saying "Just play with me. Just be my friend. Just love me." I want people to look PAST the Autism and see that I have one of the sweetest children ever.....no matter what his diagnosis is.