Welcome to Holland!

Welcome to Holland. A beautiful poem by Emily Perl Kingsly c1987. It is about raising a special needs child. Most people don't realize what goes into raising a child with special needs, let alone raising multiple special needs children. I have three. Juliana is 6, Matthew (Matty) is 4, and Joshua is 3. There are many days that living here in Holland, I wish I were in Italy. (No, I don't really live in Holland...watch the video if you haven't already and you will understand.) This week has been one of the really bad weeks. I ended up so depressed yesterday that I couldn't even talk about it. I spent most of the evening crying. Those who know me, know I don't cry easily. There were many things that went into this, too many to list and I doubt anyone really wants to hear all of it. The end of my day was when it finally got to be too much. Part of it was the fact that my children refuse to pick up toys. They don't care about bribes, they don't care about punishments. If they don't want to do it, there is no way you can make them. After an hour and a half of fighting them on it, I heard them fighting in the other room. Yes, I know all siblings fight, but this was it. The fight that pushed me over the edge. Juliana wanted to clean up their bedroom and Matty wanted to clean up the living room. All should be good...correct? No. Juliana wanted Matty to stay in the room with her because she said she was scared of cleaning up the toys by herself. Every other night of the week, Juliana cleans the bedroom and Matty cleans the living room. They decided that by themselves and have always been happy with their decision. So naturally Matty says no, and they start to fight. It finally gets to the point of violence and screaming. I went in their room, looked at them and in a quiet defeated voice said "That is it. I've had enough. I am done with the two of you fighting and I am tired of fighting with you guys to clean up a few toys. I'm going to put Joshua to bed, and then both of you are going to bed early tonight. No songs, no stories. Start getting ready for bed." and I walked out. They are used to hearing me beg, plead and yell for them to clean up toys. This was the first time I had ever used that voice with them. I went and got Joshua ready for bed, or at least tried to. He was bouncing off the walls and I couldn't get him to hold still. I finally got him in pajamas and he got back up and started bouncing around and humming.  I decided to take a minute to download the song in the video above and when I played the preview to make sure it was the right one Joshua stopped bouncing, stopped humming and came over to me and sat down quietly. He just stared at my phone. After the song ended, I asked him if he was ready for bed and he started bouncing and humming again. He repeated the sign for "bed" when I signed it to him and I took him in his room. I asked him using signs, what song he wanted for bed. (We have a sign for each of his favorite songs.) He looked at me and signed "music". I said and signed "you want the music from my phone? Again?" and he signed "again, music". I played the song and he went still. He just laid there and stared at my phone. When it ended, he signed "again" and I said "ok, but this is the last time because you need to get some sleep". I played it again and he smiled when it came on again. He was so calm and so happy. I couldn't believe that I have been searching and searching for something to calm him when he gets all crazy and here it was! Something so simple. There were many other things over the last few days that contributed to my depression, but when you look around and you have three children eating inappropriate objects, screaming, rocking, bouncing, visually stimming, orally stimming, physically stimming and stimming in any other way that they could be stimming, you get to a point where you break. Not because they are being bad, not because you are being a bad parent, but just because you look around at everyone living in Italy while your stuck in Holland when all you ever wanted to be was in Italy and you can't take it anymore. All over the internet I see my friends and family with their families in Italy. Families where you don't have to worry about learning sign language or what PECS are, or what vestibular and proprioperception means, or fragile X syndrome, or Angleman's, or occupational therapy, ABA therapy, speech therapy, IEP's, IFSP's, YCDD, and all the BILLIONS of other things that go along with having a special needs child. So while I love my children, and I am sooooooo thankful that God has blessed me with them and our beautiful family, yes....I have days where I wish I was in Italy. The pain of Italy never goes away. There really are so many wonderful things here in Holland, but some days Holland is cold, rainy, dark and damp while Italy is sunny, warm and beautiful with a slight breeze. Right now, I wish I was in Italy....

Something new for Joshua

Let me say up front that this idea was stolen (and yes, I mean stolen:) from Joshua's ABA therapist Amy. (Amy, you rock for this one! He loves it and now he has his own!) Between Amy and I, using this, we have taught him the following signs; all the different colors of the rainbow, frog, spider, jump, more, again, open, please, my turn, all done and go. Here is a list of supplies, instructions and pictures to help you make your own!

Materials needed:
An empty and cleaned parmesan cheese container
4-8 straws (preferably in different colors.)
Jumping critters
scissors

First start by cleaning out a used parmesan cheese container

Then take your straws and cut them so they will fit inside the container

Then get yourself some jumping critters. I got mine for free at the local Walk Now For Autism Speaks walk.   One of the vendors was giving away free fidgets and they had some of these. When I explained what I wanted them for, they let me take a handful.

Here is how I use this. I start out by sitting down on the floor with Joshua, I sit with pretzel legs. I empty out the container in my lap and start with the jumping critters. I make him sign for the critters by color or type and then make him sign "jump". If he signs "frog, jump" or "orange, jump" then I will make it jump off my knee and he picks it up and puts it into the large opening of the container. 

Once I've gone through all the critters I move on to straws. I make him sign the color or "my turn" and then hold the straws out really high, or off to the side so he has to look and reach for them. Then he can put them in the three little holes in the container. 

Once we are all done if he wants to do it again I will rotate the signs "more" and "again" to get him to ask to play. You can even use "play". Then I make him sign "open" for me to open it up and start again. There are so many ways you can teach sign language or work on brain function. If your child  is verbal you can do this but have them repeat what you say instead. When you are all done the container keeps everything together for you! It's a GREAT therapy toy and usually either cheap or in my case free to make:) 

Grocery store networking

I had to go to our local grocery store today to pick up shampoo, conditioner, hand soap, bananas, and a few other odds and ends. I wore my Walk Now For Autism Speaks Committee t-shirt. I love this shirt. Not only because it helps to spread awareness, but because it is midnight blue. My favorite color:) Anywho, I was shopping when I heard a woman say "My kid has Autism". I turned around and realized that she was talking to me! She had seen my shirt and the blue puzzle piece lapel pin. We started up a conversation about Autism and our children. We touched base on discipline, diet, medication, pretty much all the normal things us mom's of children with Autism talk about. Another woman pulled up with her cart and the woman I was talking to said, "I am a single mom and this is my best friend. She is my support group. With out her I don't know where I would be." When we parted ways, she said "I'll pray for you and your family, could you say one or two for me?" I said "Thank you, and of course I will!" It was so nice to talk to someone that wasn't a part of my usual group of people. I don't know very many other mom's with children who have Autism. I know about a handful. I didn't get her name, or her number, but we understood each other right away. I now regret not exchanging information, not only because I have a TON of resources that could help her, but because I want to expand my support group. Not only to get support for myself, but to be supportive in turn. That ten minute conversation really got me thinking about who I turn to for support, and I realized that I usually only turn to my husband. Granted, I will always turn to him, but it would be nice to have other mom friends in the same boat as me. I do have one friend that I am really close with who has a son with Autism, but we aren't able to get together very often. Facebook and other social network sites have been great with online support, but I want to start collecting support locally. This way we can do things together as a group. If someone has a meltdown, each one of us will understand and not give dirty looks, or say rude things not-so-under-our-breaths. I may never met this woman again, I may never know her name, but she has inspired me to get out there and push for more awareness and support. So thank you to a very friendly mom who needed someone to talk to. 

Books and tissue paper, and toilet paper....oh my!

She likes to eat books....and toilet paper.....and tissue paper.....

She used to eat baby wipes when she was 2

There were so many signs that Juliana might be on the spectrum, but we didn't know anything about it and my husband was a difficult child when he was little so we all just assumed she took after him. And we all know what happens when we assume. Of course, it turns out, she is very much like her father, but that's a whole different blog. She is now six years old and she will do anything to make sure I don't catch her eating things she isn't supposed to eat. It's funny, because from ages 3-5 we thought she had quit, and her brothers both ate the edges of the books so we thought it was only them. Boy were we wrong! She was just hiding it. Last year she attending public school and the teacher told me that we needed to work on her "social/behavioral" issues. When I asked her what she meant, she told me that the other students had started making fun of her for some of her "issues". Only problem here....I was never notified that she had any "issues". So I sat down with the teacher to find out what was going on. Turns out she was pulling down her pants often in class, hiding under desks and tables, eating paper and tissue paper, and picking her nose and eating it. At least the picking the nose thing was fairly "normal" so I didn't pay any attention to that one. At first I thought it was just an at-school thing. She has high anxiety and is currently on medication for it. So I started keeping a closer eye on it at home. I didn't notice anything at first, but then I found a wadded up piece of toilet paper in her bed. When I asked her why it was in her bed she replied with a typical "I don't know". After that I didn't see anything for a while. Last spring for reasons to long to list right now, I pulled her from school and started homeschooling her. She seemed to do much better and I didn't see her chewing on anything. Then I found out it's because I still wasn't looking hard enough. Fast forward a few months. I do a TON of therapy at home with my children. Until last month my youngest was still in the First Steps program. This is an early intervention program in our state. Joshua received Occupational Therapy, Speech Therapy, and ABA (Applied Behavioral Analysis) Therapy in our home. I learned as much as I could from the therapists, books and of course the internet for the last three years. Using this knowledge I worked with my children whenever I had the time and patience to do it. My boys both chew inappropriate objects and I worked extra hard on this issue because both of them tended to chew on wood in the house. Yes, wood. That included, but was not limited to, our t.v. stand, trim, doors, our coffee table, the bed frames, puzzle pieces, stair banisters, chairs, the kitchen table.... the list goes on. I began to notice a decrease in my boys chewing once they both had a "chewy basket". This was a brilliant idea from our OT. We put a bunch of objects that we were ok with them chewing on such as chewy toys, old puzzle pieces that we didn't use anymore, wooden blocks, ect. Now that I wasn't having to focus so hard on the boys I started to notice little tell-tale signs that Juliana had not in fact quit chewing on inappropriate objects. I would find tons of unused toilet paper in the bathroom waste basket, books chewed up (which I had assumed was from the boys....here's that word "assume" again....) and sometimes when I would walk into a room she would purse her lips together and wouldn't talk or answer questions until she swallowed. I started keeping a closer eye on her and realized that she was ripping off a strip of toilet paper, eating pieces of it and throwing the rest in the waste basket when she was finished, she would sit in her room or on the couch and chew on our collection of board books, and sometimes if I wasn't in the room, she would eat her homework. You know that old excuse "the dog ate my homework"? In our case, it was Juliana. The photos from above were taken only a couple of weeks ago. I had to take all of the books away because she couldn't stop chewing on them. Some of them were so mangled I had to pry the pages open. The photos only show about half of the ones she ate. A side effect of me taking them all away is she is now eating other paper products even more to make up for it. We are looking into ways to help her. I have given her some chew toys, but it's not the same for her. It worked for my boys, but not her. Yes, I know, it might be something she is lacking in her diet. Good luck with that one buddy.... She is a VERY picky eater. Please don't ASSUME I am some sort of idiot that hasn't done my research, because I have been learning all about my children's special needs for the last three years. I am currently trying a few different things to help with the situation, but until I find something that works, I am keeping the books and toilet paper under high surveillance.

Blue's Clues

Ok, so I have been watching "Blue's Clues" since my youngest brother was a baby. Which means I've been watching it since it first premiered on television! I have watched every episode at least five times. (This number is only that low because my children don't like the majority of episodes with "Joe" in them. Otherwise, for "Steve" shows I've seen each one enough times to know them by heart......seriously.) My youngest son, Joshua, is non-verbal and we are currently working on sign language. For the last couple of days I have watched the "Blue's Biggest Stories" DVD non-stop all day. (With one break for "It's Thanksgiving Charlie Brown".) Why, you ask? Because he has learned the sign for it and I can't say "no" because I am trying to re-enforce his efforts. This situation however, is driving me CRAZY with a super-large-capital-"C"!!!!! We have had this DVD since my daughter was a baby. She is six... I even know how many episodes to skip when they want a specific one. I know that in a day or so, he will be sick of this DVD, but in the meanwhile if I get a little cranky I hope you all will understand why! Next week I'm sure I will be complaining about "Chuggington", "Mickey Mouse Clubhouse", or one of the many other obsessions of his. Until then....