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?

I'll wash those words out with soap!!

What adult doesn't remember hearing the words, "If you say that word again, I'll wash your mouth out with soap!" I had it done numerous times when I was younger (I was one mouthy youngun, can you imagine that?). 

However, this is something I have never had to do nor would do. With the allergies my oldest son has, we're lucky if he can even USE soap to wash with, much less have it in his mouth! 

Yet, although I have never intended to use soap for the purpose of "washing out a mouth" I have used that as a consequence of potty mouths. When my older two were younger, they each let a foul word come out of their mouths. The first thing I did was to explain that it was a naughty word and they shouldn’t say it. The second time they said it, I told them that if they used that word again, I’d have to wash that word out of their mouth with soap. I still remember each time I told one of my children this. They looked at me with wide eyes and a look of shock! They each asked several questions about it…..how it would taste, which soap would I use, etc etc. Needless to say, neither child ever said the word in question again.

Enter……….Pookie. Today, while his speech therapist was here, he climbed in my lap and asked me to call her a not so nice name. I looked at him and told him that if he said that word again, I’d have to wash it out of his mouth with soap. I didn’t stop to think it through. I’d done it with two other children with great results, what was there to think about? 

But, as with all things, Pook’s way of interpreting information isn’t the same as ours. He hopped off my lap, looked at me and very serious said, “OK, wait here. I’ll go get the soap!” He then smiled and ran off to my bathroom. I joked with the speech therapists about his response. As he came bounding out of my bedroom on his way into the living room I was appalled! Pookie had a bar of soap in his mouth and was vigorously scrubbing his tongue. I herded him back to the bathroom thinking of all the horrible germs that were on that bar of soap! I took Pook to the sink and proceeded to wash out his mouth with water and have him wash his hands. He however didn’t see the need. Why wash his mouth? He just wanted to go play.

Today’s lesson is a lesson I’ve already seen a thousand times……… don’t say anything you don’t want done around Pook!

I’m just hoping that no one ever looks at him and says, “If your friend jumped off a bridge, would you?” 

He needs no more ideas!

Ear infections and other people's haircuts

Pook has had croup thru the winter since he was only a few weeks old. Nebulizers and albuterol fill most winter nights in our home. A couple of times there have been emergency room trips to the hospital, but overall nothing that wasn't handled. Most recently, Pook was diagnosed with asthma. Although he was started on Singulair in the hopes that we would not have to give him a stimulant (as if we want Pook jacked up any more then he normally is), it didn't work. So, Pook had to start Advair (an inhaler that is a stimulant). The pulmonologist told me that I could regulate his dosage, as long as I did not exceed the maximum dose. 


At first, we were able to use it just once a day but his coughing/croupy episodes begin to come more frequent and lasting longer. So, in addition to his nightly nebulizer treatments, he was also getting his inhaler twice a day and a cough syrup to boot. Still, no relief for his cough. So, after three weeks of nightly coughing, I took him to the doctor. He hadn't been running a fever and the only thing he'd complained of was his head hurting during the night. Since he suffers from migraines, and was coughing so much, a headache would seem "normal" under these circumstances. 


Upon the doctor's exam, it was discovered that he had an ear infection. The doctor said she was surprised he didn't complain about it. I got the impression he must've had it for a while. The doctor also seemed surprised that he had not had a fever.    

It didn't surprise me that Pookie hasn't complained of pain. I've seen that boy take falls that would make a grown man cry. He didn't bat an eye, just jumped up and kept going. Not running a fever though, this concerns me. A fever is a sign that your body is fighting off infection. Does this mean then that his body isn't fighting off infections? With no real sense of pain, and no fevers, how will I ever know that he is sick? 

I got to thinking about it; Pookie can't regulate body temperature either. In the winter he gets so cold, so fast that he feels frozen. In the summer he gets so rapidly overheated that his face is the color of a lobster with chalk white rings around his eyes and mouth. 

If he has issues in this area, could this keep him from running a fever? 

As always though, I'll look at the bright side. IF I ever put him in public school, at least he'll not get absences due to fevers! ;-)

OK, so now we covered Pook's current ear infection. But of course, that's not the end of the story. It appears that his increased inhaler use, nightly nebulizer treatments, cough syrup and his new antibiotic has resulted in his being even more active then normal. The coughing fits are really starting to upset him. This morning he woke coughing and the first few hours he was awake were horrible. He managed to throw all our VHS tapes on the floor, run about 50 laps thru the house (it's in the shape of an 8), beat up both his older siblings, and trash his room I'd straightened up the night before. Once he calmed down and was occupied, I went to jump in the much needed shower. However, on impulse I decided to cut my hair. Not much of a difference then before. I went from this......

to this......

 

 

 Nothing major, right? 

WRONG WRONG WRONG. Pookie walked into the bathroom and screamed at the top of his lungs........ 

"What did you do to your hair?"

He then proceeded to run thru the house, screaming and yelling while demolishing everything in his path. Now, when I attempt to talk to him, he looks at me like he has no idea who I am or why he should even think of listening to me. Each time he sees me, he gets this look in his eyes like its all he can do to maintain. 

I should have known. The same thing happened when I changed my hair color. It happened when his "Bubba" had his hair cut shorter then normal. It happens when he gets new shoes or we go someplace new. Yep, change and Pook don't go hand in hand. 

 It could always be worse. The first time he discovered that hair could be colored, he insisted that everyone in the family have blue hair. Blue is his favorite color (and the only color he recognized his first 3 years of life). If my hair could be red, why not blue? He hounded us for days, even putting his bathtub paint that was blue in his hair and streaking thru the house to color all our hair also. 

Who knows, tomorrow maybe he'll forget my hair was longer.

***

Footnote: While putting in the hyper links to the text, Pook got scissors and started to cut his hair. I asked him what he was doing and he said he wants hair "just like Mike's".  Mike is the pastor at our church who married us. Only thing is..... Mike is bald. 

*********************

Update: Pook was sincere in his desire to look like Mike. He grabbed his kid safety scissors and made three significant cuts to his hair. Straight to the scalp and right in the front. Only choice was to cut it short. Soooo, he went from this.....

  

to this......