Pook's Amazing Thoughts....

There's just so many ways Pook has grown lately, and I'm not talking physically. 

First, Pook has a girlfriend! Yep....a girlfriend. It doesn't matter at all that she's over a decade older then him, he adores her. Each time he sees her he pulls at me until I take him to her. I have no idea why I must take him to her, once he's with her he forgets I exist. He snuggles up to her, bats his eyes at her, and is calmer then he has ever been. She puts him down and he follows close behind her. So close I'm sure she can feel his breath! He holds both his hands in front of him, like a small puppy that rises on it's hind legs begging for treats. She stops, he stops. She turns, he turns. The look of adoration on his face leaves me speechless. (and not many things can do that!)

Second, his concepts of himself and the world around him are growing. He told me the other night, "Mommy, I can change my mind! Watch....yes, no, yes, no, yes, no." A few days later he asked me about someone else, "You mean she changed her mind?!" He seemed quite shocked that someone else was capable of doing so! 

Then, there is the fact that he's started telling some tall tales. And boy has he told some whoopers!! I know, it's a normal stage of development. I'm pleased that he's right on track with this stage. I can't help but giggle as I hear the stories he tells his father and as I see the expressions on his father's face. I'm not sure which part I like hearing the best.....Pook's stories, or his father's responses!! 

The other night, leaving a friends house, I told Pook to get his car seat straps on. He told me he had. I looked back and thinking I was going to be on top of this conversation, asked him to show me. He looks at his chest, pretends to pick up his straps, lifts them up for my inspection, and then looks  me straight in the eye. I tell him that I don't see any straps and completely exasperated with my incompetence he says, "They're invisible! Duh!" (Duh....my 4 year old says duh!) Sooo, now Pook has his invisible straps and the "other ones" I force him to buckle! 

Everyone has noticed a difference since Pook started his cod liver oil. It's taken 4 years before his little bowels could tolerate it, but I am so thankful to God that he can now. His speech is improving by leaps and bounds, his attention span is longer, and he's soooo much calmer. At this stage, if it weren't for his speech delays and his obsessive compulsive behavior, he'd be clocked at "typical". 

It's taken 4 long years full of tears, both mine and his, but finally it looks like things are starting to settle down. All the things that I was told couldn't happen with him, are. All the progress I was told he couldn't make, he is. All the dreams I've had for him are starting to come true. 

Thank you to each one of you who believed in Pook. And thank you God for creating him exactly the way he is. Uniquely divine!!

Fear versus Faith

I'll admit it, I'm struggling. It just seems I've fought so long for Pook and am still fighting so many of the same battles. Why?? 

We just came from a lengthy vacation. We stayed at a secluded cabin, on top of a desolate mountain, with the driveway coming off a dead end road. The sounds of birds and the running creek is all we heard. Days were spent outside playing amongst God's creations or splashing in creeks and lakes with water so clear you could see to the bottom. Everywhere we went there was the sound of water rushing through rocks. There was no traffic, no television (except for the occasional viewing of Facing the Giants or Flywheel at bedtime), no computer, no telephones, no company, no loud noises.............just peace and quiet and serenity. With all that said................Pookie was "typical".  Yes, I mean "typical" as in "normal".

Our first day up was rough. Then again, what 4 year old can handle a long car ride well. Add to that the unusual events of packing out things before leaving, and having to go to a place we'd not been to in a while..........well, you can imagine his struggles. Yet, the next day he jumped out of bed saying, "Mommy, I hungry". That was my first sign that something wasn't quite right. A "normal" morning appetite that continued day after day while there? This from the child we can rarely get to eat breakfast and struggle to get him to eat each mealtime? 

Throughout the entire day, he didn't have a single meltdown! In fact, on our entire trip he had only three meltdowns (not counting the day we left to go there and the day we left to go back). Two of the three meltdowns occurred when we were taking the scenic route (aka= LOST) and were cooped up in the truck (5 people cooped in a small Ranger pickup). Of course, by that point in time we were all grumpy and tired of being cramped up for that long despite the beautiful mountain views. The third I'll discuss further below.

The day before we left we visited a swimming hole/waterfall we'd been to earlier in our trip. Although located right off a busy highway, the sound of the creek and waterfall drowns out all sounds of traffic. It's a secluded paradise requiring a park on the side of the road and a trek down an unmarked foot path. The swimming area has water cascading down rocks just above and just below, with a waterfall just below that. There, we splashed, laughed and had a joyous time. However, as with our previous trip there, teens and adults came to jump off the waterfall. Pook, with his lack of fear, decided to do the same. As I chased him down the shore and grabbed his ankle as he scaled an unbelievably high rock (I promise you he's half monkey), I kept telling him he could not jump. While holding his ankle and attempting to persuade him not to jump, I asked a young girl sitting on a rock next to the one Pook had climbed to hold my camera, thus enabling me to climb up on the rock with Pook. I passed over my camera to the stranger on the neighboring rock and climbed up beside Pook. I proceeded to explain to him the same things I had two days earlier. The usual "it's to deep" and "only grownups are allowed to jump" and so on and so on. The girl who was sitting with the one who had now held my camera for several minutes spoke up and told Pook that it wasn't really that fun jumping off.  E&S then proceeded to help Pook realize that he'd much rather come sit between them then jump into a waterfall. 

And so begin a new friendship. E&S were great with Pook! I explained that I had to watch him very closely as he sat with them as his obsession with jumping would not be easily forgotten. We spoke of his previous diagnosis and the ones yet to come. S looked at me right in the eye and told me that she would have never known Pook had special needs, apart from his obvious speech impediment. I was taken aback and had to contemplate exactly what she'd said. Yes, I've had others tell me that they couldn't tell or didn't know Pook had special needs but it was always followed by, "I just thought he was really over active" or "He just appears to have some behavior issues". Yet, S didn't follow up her statement with anything else. To all appearances, I  had a normal, healthy 4 year old with no special needs! I know part of it was the white noise of the waterfall, but something clicked for me. The whole time I'd been there I had the nagging though, "Pook seems normal here" but kept pushing it down. I mean, that would just be to good to be true now wouldn't it? Yet, here was someone else recognizing it and putting it into words. 

We ended up leaving the falls and heading back to the truck with E&S walking with us. As the sounds of the traffic begin to be heard, Pook reverted back to his "usual" self. The girls recognized the difference in him. Seeing him at the truck near the busy highway, they could recognize that something wasn't quite right with him. We stayed a little to long near the highway talking and exchanging contact information. Pook couldn't handle the close proximity of the traffic or the unnatural noises the rigs and cars made. His getting in his car seat became an olympic event with my body being strained physically in an attempt to take a rigid, screaming, thrashing body and place it into a 5 point harness. Once back towards the secluded area we were staying at, he calmed and was seemingly fine. 

I've done my research. I understand that sensory stimulation has a direct impact on Pook's days. I know that sensory stimulation for him are things we don't even notice. The smell of clothes laundered in scented detergent, the breeze from a ceiling fan, the sound of traffic that we can't even hear, the tags in his clothes, the radio even when playing his favorite song.  Each bit of sensory input pushes him to his threshold. When that threshold is reached, everything becomes a battle and struggle for him. 

In the past year, Pook's sensory input has greatly increased. Visitations with his father weekly take place in a childcare environment with bright colors, numerous toys, and traffic on a busy street. Having found a wonderful church family, one to two times a week we attend. Then, we meet with a few families one night a week for dinner and a Bible discussion. We've eased him into these things. Partly because I so desperately needed the interaction and partly because so many educated people have stressed to me the importance of getting him social interaction. I've been pushed to introduce him to various sensory stimulation that I previously sheltered him from. I've been barraged with well meaning advice telling me that one day he'll have to deal with these things and must get used to them now. I've been haunted by visions of his being a teen and having a meltdown in the grocery store because there were to many unknowns and to bright of lights. And so , in an attempt to brace my child for the world, I've entered into his life regular shopping trips, music and educational television shows, childcare settings, trips to popular and populated parks, and so on. And with each introduction I've watched him melt a little bit more. 

So, today I sit here writing this and am struck with a profound guilt. I KNEW what was best for my son in the beginning. We lived at home in a created peaceful, low sensory environment and he functioned greatly. We banned scented soaps and softeners, incense, and candles. We got rid of the television and rarely listened to music. The telephone's ringer was never heard nor was the answering machine when it picked up calls with the volume turned all the way down. No one came by without advance notice and we didn't make spontaneous trips. He was not required to visit grocery stores or department stores. His clothing was all soft, seamless and tagless and running around naked all day was acceptable. Shoes were unheard of, schedules were strict, bedtimes were expected to take a minimum of an hour. His diet had no corn syrup, no dyes, nothing artificial. We were content and he was a unique child that appeared normal to anyone who did visit. 

Yet, I let all that change. I let people seemingly more knowledgeable then me persuade me to change the way I did things. I placed my trust in well meaning people instead of the things God had shown me. I let fear overcome my faith. 

So now God, I turn my son back over to you. You have given me a most beautiful gift and charge. You have determined that I should raise him according to your Scriptures, your morals and values, and your will for his life. It doesn't matter if he grows to never enter a large public shopping center. It doesn't matter if his clothes are always going to look like pajamas. It is completely irrelevant if, once he's grown and on his own, he refuses to turn the ringer on his telephone or doesn't have a television. It's fine if he decides to live in the country secluded from traffic and noisy neighbors. It's OK if in life he prefers the company of only a couple dear friends instead of crowds and large groups. If he'd never been diagnosed..........if it was unknown he had unique and special needs..............then those choices would simply be considered preferences and not "issues requiring therapy". 

And so, take my son God and mold him into what you have planned for him to be. You recognize his strengths and weaknesses. You know the depths of his being and all that he needs. Although you may not be responsible for his being born with special needs, you created him unique and beautiful. You can take any weakness and make it a strength. Let his life glorify you and your relationship with him never falter. 

Forgive me Lord for doubting. Forgive me for allowing fear to overcome faith. 

Thank you for using this vacation to show me exactly what my son needs and how to give it to him. You are amazing God! 

A New Adventure

I waved as Pookie went down the driveway in my aunt's car. Just he and her, on their way to pick up his cousin from school. They are going to spend a few hours together. As I watched them pull away my mind frantically scrambled to form a complete thought, yet as soon as I thought of one another was rushing in to take it's place.

*He's never gone off with another adult alone like this

*What if no one understands what he's trying to say

*If he gets hurt, he won't know to tell anyone. What if no one notices?

*I hope he doesn't hit anyone or anything

*Wow, is this really happening?

*I'm so proud of him.

*He's smiling and is so happy

*Please God don't let him get discouraged, ignored, insulted.

The first time I sent the older two off with another adult, I felt a nice, soothing yet melancholy feeling. A kind of "ahhh, they're growing up so fast" and "where did time go" type feeling. Yet, they could communicate. They could talk and be understood. They knew if they got hurt and would report the injury immediately to whatever adult was nearby. They didn't get frustrated because no one understood them and rather then take the time to figure it out, they were ignored. They didn't decide not to go places anymore because "they can't hear me".

Yet, I know that I can never protect Pook from the atrocities this world sometimes shows people with special needs. There will be plenty of times in his life where he is ignored because he is not understood. There will be plenty of times in his life where he wants to give up because he feels so jilted and alone. I can not protect him from these things. Rather, all I can do is let him know that God loves him unconditionally, all the time, no matter how things seem. All I can do is let him know that we love him all the time. All I can do is let him know that there will be people in his life who will be his friends even if they can't always hear them.

And so, I am going to take a deep breathe, play some music, say another prayer, and tackle the mounds of paperwork I must complete before vacation.

I'm going to think about the story I read yesterday of a bandit runner who, although in first place, went back to where a man with Asperger's ran and encouraged him so that he finished first. And, I will pray that today my son's life is touched by another child with the same compassion that bandit runner had.

I miss Pook's "Mo"

I sit down at the pc with the full intent to blog……….but then get distracted. Someone sent me an email that got me to wondering…..or I read a post on FB….or, like today, I checked out an updated blog. And so on a tangent I go and before I know it, the day is over and I still haven’t blogged. *sigh

I know I keep promising that I’ll be more up to date with my two blogs. My intent to blog is to reach out to others who have to go through the same type of thing, but not getting feedback in the form of comments/followers sometimes makes me wonder if it’s worth it. But, I’m pigheaded and believe that someone needs this blog, so here goes!

I read a blog today about an assistive communication device. Those of you who know Pook may remember his “Mighty Mo”. It was a loan from the North Carolina Assistive Technology Program. At a time when Pook had no words, this box gave him words. This, in addition to the speech therapy he’s received for the last 34 months, helped him to enter the world of the speaking. I had to return “Mo” when the loan was up, and at this time he had some words to help make his wants known. He’s at a point now where, between my daughter and myself, we understand the majority of what he says. He still gets frustrated when he speaks and we don’t “hear” his words, and at these times I think back fondly to “Mo” and wish he were still here.

The blog I read today (Making Weird Cool) talked about Proloquo2go. Basically, it’s a “Mo” for your Iphone or IPad. A small, in style, tech version of “Mo”. As I read about Proloquo2go, I started to think about the limitations that Pook has in his speech. As before, I wonder how much his inability to communicate affects his behavior. Is he so easily frustrated solely because of his communication issues? Is the delays we see in his social skills a direct result of this? If Pook had a “Mo”, would he initiate conversation with others instead of shaking his head and telling me that other people don’t “hear” him?

The “Mo” that we had was heavy….and bulky….and a pain in the butt to charge. Yet, it allowed Pook to share with us so many things he otherwise wouldn’t have been able to. We primarily used it at home, for our personal communication with him due to it’s weight and size. Yet, a pocket size Mo……what could this open for him?

For some odd reason, Mr. Magorium’s Wondrous Emporium just jumped into the forefront of my mind. Why? Maybe because the movie shows that nothing is impossible if only you believe. Do I believe that a piece of technology could open up new doors for my son? Do I believe that enhancing his ability to communicate would help his behavior? It’s not about what I believe. It’s about what he believes………..what he dreams of…………what he desires. And, at 4 years old, my son has told me already that he wants “ebeeboby” to hear him.

So, Pook needs a way to express more then he can. It’s time to find him a new “Mo”.

Pook watched “Mr. Holland’s Opus” with the family the other night. I really didn’t expect him to sit through it. I absolutely did not expect his comments afterward. Pook asked me if I saw all the people that had signs. It never occurred to me that, although he has learned some signs and we use them frequently among us, he’d never seen what signs could do! He didn’t understand the full concept of signs being used to fully communicate when no one else could “hear”. He has since said that he wants everybody to use signs. He then listed off all his friends and family that he wants to hear him. He’s intent on learning more signs now. I tried to tell him that not everyone knows signs, but he is convinced it’ll work for him. As usual, he’s learning signs faster then me.

Pook has come along way. Of the things he says, he’s usually understood. What most people don’t realize is that he doesn’t say things he thinks other people won’t “hear”. His brain tells him that he is saying exactly what he thinks he is trying to say, so in his mind it is still other people who just can’t “hear” him. Even now, I’m a mother who looks at my son and wonders what he won’t say, because he thinks I won’t hear him. *sigh  Yep, it’s time for a new “Mo”.

Dentist and more...

Pook did fabulous with his first dental appointment. When the paperwork was sent, a flyer with a photograph of the dentist came also. This enabled us to show him the picture so that when he arrived he would know one familiar face. 

Upon arriving, we weren't sure how things would go. The dental assistant took his sister in first for x-rays, allowing us to stand in the hall and watch. He then got her settled in and brought Pook to his table to lay on. He used lots of hand gestures while speaking, stayed on Pook's level, made constant eye contact, spoke in a soft and gentle voice, and explained each and every thing he was going to do in a way that Pook understood!! Not only did Pookie get his teeth cleaned, he also got them x-rayed! All with no problems!

The dentist office was small, the open bay area had only three tables. Everyone who worked there spoke in a calm, quiet voice. There was no rapid paced footsteps or anyone rushing. This pediatric dentist knew all the right things to do and made sure everyone did it! 

Finding doctors who understand what your child needs is difficult. It took me an entire morning of making phone calls before I found a dentist I thought would work out. I was frustrated spending hours on the phone for  a dentist, but today showed it was worth it. 

Keep in mind though, despite your best efforts, things don't always work out for the best. Sometimes you can't ask enough questions and end up in a doctor office that screams sensory overload! At those times, it's often easier to just walk away and start over again then force your child to go thru, what for them, is a horrible experience that may stay with them for days. 

How can you help others find doctors that are great for children with special needs? Post reviews! Google the name of your doctor office and then write a review. Tell others how wonderful (or horrible) the doctors office is. Also, don't forget word of mouth. Tell others when you talk to them about the wonderful doctor (or in this case dentist) you've found for your child. Email it to all your friends. You never know when they might run into someone looking for the same doctor you've successfully found. 

You've heard the saying, "It takes a village to raise a child." Look for ways you can be that village!!

Dentist for the Sensory Child

It's time to schedule an appointment for my son to see the dentist. I've decided that if he is accompanied by one of his siblings who is also seeing the dentist, he'll be less fearful. However, the only dentist that will allow this are those that have open bay areas. Yet, I can't expect Pook to be able to maintain in a room with several other children being treated at the same time. First, the sound of all those machines running at once will rattle him. I can only imagine if a child begins to cry. Last, I need to be able to accompany him when he goes back as he's hit this stage where he can't stand to have me out of his sight. So, the search begin. 

I called several pediatric dentists only to find out they had a strict  policy against parents going back with their children. OK, so I understand that  many children do better without a parent in the room to see their theatrics....but to have NO exceptions at all?? I have no problem with my other two children being seen without me in the room, although their dentist always let me travel back and forth between their two rooms at will. Yet, in no way do I want my youngest, who isn't able to effectively communicate many things, to be taken back to a room by himself. My son isn't able to articulate the things that bother him or even hurt him. No matter how good the dentist is, or how much experience he has in dealing with children with sensory issues, each child is unique. So, first step is to just find a dentist who will allow me to go back with my child. After several phone calls, I was finally able to find a dentist who would allow me to come back. However, this dentist ONLY had an open bay area and in the event that it was to loud, would not be able to take him to a private room. So, more phone calls.

After a very exhausting and frustrating morning, I finally found a dentist that had all we required. First, there is an open bay area. So, both Pook and his sibling can go back at the same time. They'll be able to both have the same thing done, next to each other, in an effort to calm Pook. If the open bay area should become to loud and upset him to much, we will be able to take him to a private room. And, I can accompany him at all times if I feel this is necessary. 

Now, after the four hours I spent online and on the phone searching for a dentist, I couldn't help but think that each dentist website should spell out their own specific rules. I also couldn't help but think of the recent news article of the pediatrician that was charged with so many child sexual abuse charges. Did his office have the same policy? 

A few days after scheduling Pook's appointment, we were lying on my bed talking. He looked up at me and smiled and I was horrified to see that one of his teeth had a huge chunk taken out of the front of it. I begin to examine his teeth and saw that many of his teeth were chipped or had pieces missing. Now, several months ago I took him to the doctor because he was grinding his teeth so severely at night that it could be heard in the next room. I was assured that unless it interfered with his sleep, or his permanent teeth were coming in, it wouldn't be an issue. I later noticed that he grinds his teeth when he's excited. Apparently, his teeth grinding is an issue if he has so many pieces missing!

How hard does a child have to clench and grind their teeth to chip them? I recall my oldest son falling at school and hitting  a counter. It pushed his front tooth up into his gum, but it didn't chip it!  A bit panicky I typed "teeth grinding autism" into google only to find out I wasn't alone In addition to chipped teeth, some children actually grind their teeth down! 

My mother assured me that Pook could be given a mouth guard to wear at night to prevent him from grinding his teeth. Soooooo, the child who has to have all tags cut out of his clothes, wears his socks inside out, can't wear shoes that fit (except boots), won't sleep with a different blanket, must have everything the same all the time, and flips out if you even attempt to have him try something new...............is supposed to wear something in his mouth each night???? 

I guess we'll wait and see what the dentist says. If she mentions a mouth guard, do you think she'll find my hysterical laughter unsettling?

Sensory Friendly Movie Theaters??

Our family does not go to theaters. There is no way that we can expect Pook to handle the crowd, the noise, and the brightness of the screen. We are fortunate enough to be able to go to the drive-in occasionally in the summertime. Yet, today I learned that there was a theater in my state that offers "Sensory Friendly Films". During this time, per the website, "The lights are turned up, the sound is turned down and audience members are invited to get up and dance, walk, shout or sing!" Although I have not verified yet, I've also read on a different site that families are allowed to bring in their own gluten-free and casein-free snacks and that no advertisements will be shown before the movie!

I just checked with the one theater in my state offering this. The next show is March 20th and is The Diary of a Wimpy Kid. It's only showing that morning and it costs $5 each person, adult and child alike.

Here is the link to the Autism Society where I first found the information:

http://www.autism-society.org/site/PageServer?pagename=sensoryfilms

Here is the link to AMC Theater. Although not the only theaters offering this, it is the one that is most prominent. On this site, locate your state and city at the top of the screen. You will be lead to a page with two drop down boxes. The first, pick "Sensory Friendly Film" and the second the day and time. Since these showings are not weekly, and maybe not even monthly (my local one didn't offer the one this Saturday as seen on the Autism Society's website) it might be better off if you call them.

http://www.amcentertainment.com/

So, I'm off to mark my calendar! This will be the first time he's ever sat in a theater. Wonder what he'll think?