Navigating this tough journey

Discussion in 'General Parenting' started by Lily's mom, Feb 26, 2018.

  1. Lily's mom

    Lily's mom New Member

    Hi everyone,
    My name is Laura, I live in Ontario, Canada, and I am the mom to 6 year old Lily. My partner and I have spent a lot of time feeling very alone in our journey. We live in a rural area where there isn't a great deal of understanding about kids like Lily. She has an undiagnosed genetic disorder (whole exome sequencing showed nothing but her doctors remain convinced it is genetic) and a complicated list of conditions; it is her aggression and hair trigger that brings me here though. Her pediatrician suspects an explosive disorder and ADHD. I am in the education system and have a good range of strategies to cope with her but she pushes me beyond my level of comfort with her complex behaviour. We have just started clonidine this week but we are both feeling so tired of feeling alone. She is never invited anywhere, we have no respite presently (although we have something in the works) and we are exhausted. I am hoping I have found a place where I can ask questions and share without judgement. Being a school administrator with a Special Education background, I hope I can be some help to all of you too!
  2. Baggy Bags

    Baggy Bags Active Member

    Welcome, Laura!

    I am new here too and finding this community to be incredibly supportive and informative.
    We also live in a rural area where finding help is very challenging.

    You are not alone.
  3. Copabanana

    Copabanana Well-Known Member

    Welcome Laura. You are not alone.

    Many parents recommend a book called The Explosive Child by an MD named Greene I think.

    Over the almost 3 years I have been here there have been so many 5 or 6 year olds with a similar constellation of symptoms. You might do a search.

    We have a number of members from Canada.

    I can assure you you will find support, caring and information here.

  4. JRC

    JRC Active Member

    Laura ((hugs)) I'm glad you're here. I hope we can all be of mutual help xo
  5. Lily's mom

    Lily's mom New Member

    Thanks everyone, I just bought the Ross Greene book. Good reminder to find some time to read it! :)
  6. Littleboylost

    Littleboylost On the road unwanted to travel

    Welcome Lilly’s Mom;

    I know the pain of being isolated from others. My son is an addict and there is no empathy or support just a lot of dead air.

    You and your husband definitely need some respite. I am glad it is in the works.

    There are many here who will share their similar experience with you.

    You are not alone.

    Welcome from Burlington Ontario.
  7. Triedntrue

    Triedntrue Well-Known Member

    Welcome to this site. I am sure you will find many wonderful and supportive people here. I am sorry for your trouble. Explosive disorder was mentioned for my son but never confirmed but he is an adult.First as this site can be viewed you might not want to use real names to remain anonymous. I am a retired educator who worked in remedial education. It is so much more difficult when it is your own child. Sometimes it is easier to work with children that you are not as emotionally involved with. Also with them they go home giving you respite from the situation. I hope you find peace here.
  8. BloodiedButUnbowed

    BloodiedButUnbowed Active Member

    Hi and welcome,

    You are in the right place. The good news is, with the combination of your professional knowledge and Lily's young age, there is still plenty of time to find the right combination of therapy, medications and placement to allow her to reach her full potential.

    What is her current educational placement? Does she display the same behaviors at home and at school?

  9. Lily's mom

    Lily's mom New Member

    She is in a mainstream class. If I put her in a developmental learner unit, she couldn't go to our local school. We have some great units around here, but the closest ones have a lot of stairs. One of Lily's diagnoses is a visual processing disorder called Balint's syndrome, which means she doesn't see her lower visual field unless she is focused exclusively on it (if there is any competition with her upper visual field, she loses the ability to see the lower field.) That makes stairs very dangerous so i was worried about her going there. Our community school has been amazing; she has full EA support with an amazing staff and they have helped her be successful. She knows her letters, is starting to read and can count to fifteen, which is great for someone who is developmentally about two years behind her peers.

    Her behaviour is very similar in both settings; she reacts without processing. if you ask her if she wants to go buy a toy, she will freak, hit and throw things as she hasn't even grasped what you said before she reacted. Her EA and I take a lot of hair pulling and hitting. Her dad gets a lot of things thrown at him.

    I am not worried about the privacy - I would never discuss my students or school, and I have nothing negative to say about the care she has received. I am very open in our community and have found that by helping people to understand, they treat her much more favorably and are more forgiving. I believe she (along with all our kids) has a lot to teach the world about patience, difference and love. Everyone round here knows her - she is like the Walmart greeter at school, she knows everyone's parents and says hi to them all lol.
  10. Baggy Bags

    Baggy Bags Active Member

  11. susiestar

    susiestar Roll With It

    I love the open way you are with your community. Hopefully the more open you are, the more they will help. I am not really familiar with Canada's school system or laws about the rights of those with disabilities. I do know that society is changing. People everywhere are seeing those with disabilities as people, not as their disabilities. Hopefully this will benefit Lily.

    I am a HUGE advocate of at least seeing if occupational therapy, and especially sensory integration therapy, will help children with disabilities. People with autism usually have some degree of sensory integration disorder. This means that their brain does not process input from their senses the way that a neurotypical brain processes them. To someone with Sensory Integration Disorder (SID), sensory input is either too much or too little. They may not register something or may want it amped way up past what a "normal" person would want. They may want the opposite, to have none of the sensation. In some situations, they may even feel as if the sensation is attacking them, or as if a whole group of sensations is attacking them. I have Sensory Integration Disorder (SID) and on a bad day it feels like the whole dang world is attacking me. I want to curl up on my soft sheets with my dim lighting or no light at all and listen to something very soft. My youngest had it written into his educational plan that he could stay home whenever he needed to due to his sensory issues. He would shake back and forth and go pretty much catatonic if he was overwhelmed. Push him past that and it got UGLY. Teachers freaking out and getting his sister out of class to figure out how to handle him ugly. My poor daughter was only a few years older, but she always paid attention and I was a stay at home mom for reasons like this. To learn more about what Sensory Integration Disorder (SID) is, read The Out of Sync Child by Kranowitz.

    While your daughter does not have autism, you don't really know what she has. Her brain certainly is not neurotypical. It cannot hurt to have her evaluated for sensory integration disorder by an occupational therapist. One method of helping children with Sensory Integration Disorder (SID) is to provide a sensory diet. This to provide the different types of sensory stimulation that they seek out at regular intervals during the day. It is relaxing and soothing. It might not look soothing to you, but it is to them. The great thing about therapy for your child's sensory diet is that the activities that make up her diet are FUN for her. You will NOT have to force them on her. If you have to force them, they are the wrong things to do. Given how miserable some kinds of therapy can be, I loved this. How many times do you have to tell your kid to go have an absolute blast?

    The other book I recommend about Sensory Integration Disorder (SID) is The Out of Sync Child Has Fun by Kranowitz. It is PACKED with activities that are fun for kids. I wore out several copies of this book with my family. Partly because it seemed like every kid in the neighborhood showed up whenever I got the book out. It is also filled with ideas to make each activity less expensive.

    One other therapy for this is called brushing therapy. It MUST be taught by an Occupational Therapist (OT) because if you do it wrong, you can cause actual physical harm. If you do it right (and it is simply once you have been trained), you teach the brain how to handle input from the senses. You quite literally create new pathways for the brain to handle sensory input. It involves absolutely ZERO medication. You take a soft brush and brush your child's body in a specific pattern, over clothes or on bare skin. Then you gently compress her joints in a certain order and you are done. Most kids either don't mind it or like it.

    Given what you have said about her reacting without processing, I think this might help. I just wonder if she is reacting to the sudden sound of your voice as you ask if she wants to go buy a toy, before she knows what is going on. The sudden change may be jolting to her senses. I don't really think people connect this to the senses, and maybe it is connected.
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  12. susiestar

    susiestar Roll With It

    I am breaking this into 2 posts because it is 2 ideas and they each take some space to explain. As you can see, I write a lot.

    When you ask Lilly things and she gets upset, how do you get her attention? Does she get upset every time you get her attention? Does she react with the hitting and hair pulling, etc... each time you get her attention?

    You are going to think I have lost my mind when you read about the first part of this. Stick with me. I am NOT crazy. This was the most effective thing I did with my kids. I have not done it regularly in 8 years but I did it last night and it worked just like I had never stopped.

    I used to have kids that would not give me their attention. When it was time to stop a game or the tv, my oldest child would go into a rage. He was the worst, though the other 2 had problems. I gave warnings. I set timers. I whispered in his ear to get him to hear me. I got down to his level, right in front of his face, between him and the tv, to tell him that he had to stop in five minutes. He would tell me that he heard me and it was okay. In 5 minutes he would swear that I had not given him a warning, I had just stopped his game. Finally my mother told me that I didn't ever actually have his attention, not even when he looked me in the eye and spoke to me. She thought it was karma. I think I called her an Old Bat. She told me I had to figure out a way to get his attention.

    There was ONE thing that I could whisper from upstairs while my kids were in the middle of a tv show that would have all 3 of them running to me. The word chocolate combined with anything. Chocolate pudding. Chocolate chip cookie dough. Chocolate bar. They would drop ANYTHING and RUN.

    So I used it.

    I started saying chocolate chip cookie when I wanted their attention and giving them one every time. After a couple of weeks I tapered it to every 2nd or 3rd time. They never knew. Then I tapered it more. If they stopped paying attention, I gave them rewards more often for a while. I never kept to a reward schedule they could predict. They also never knew if I would say chocolate pudding, chocolate chip cookie, chocolate chip cookie dough, or something else with chocolate.

    Even after not needing it for years, I was wondering about it last night after talking to my mom, so I tried it. I had some chocolate candy. It worked and we all laughed really hard. Heck, my oldest has his own apartment and pays his own bills. He was visiting for a few minutes when I did it and he STILL was the first one to me!

    Figure out what you can use as a reward to your daughter for giving you her attention. You may have to start small. I always believed that food was best because it was easily portable and it was an immediate reward. It could be a small reward (a few M&Ms) or a bigger reward (chocolate cake). Either way, it was a payoff NOW, not later like waiting until you get to the store for a toy.

    It is just a thought.
  13. Lily's mom

    Lily's mom New Member

    She has a sensory assessment planned, thanks for the advice! We just started with a behaviour support / developmental disabilities team that includes developmental pediatrician, psychologist, Occupational Therapist (OT), Speech Language Pathologist (SLP) and behaviour specialist and that was one if their recommendations. Just have to wait for it. I haven't read that book, will check it out, thanks!
  14. Lily's mom

    Lily's mom New Member

    Haha, that is such a good idea! She is a bit more random than that unfortunately, but i will keep that in my tool box!
  15. susiestar

    susiestar Roll With It

    We worked with a similar team for our oldest about 4-5 years after he started having problems. They were a HUGE help. I wish our team had included an occupational therapist for every child. They just didn't include one except for kids witn drastic challenges. It took until my 3rd child was having severe challenges for me to figure out the sensory bit of things. Even though I was told my oldest child was "too old" for the sensory things to help him, I did them with him anyway. I was told it would not hurt him, it just would not help him. It helped quite a lot.

    As for the second thing, that was my own thing. My mother thought I had lost my mind. I am sure MANY parents here think that also when I describe it. But my kids will still, even many years later, stop and give me their attention no matter what. What do I care if I sound like a crackpot to other people if it keeps my kids and I able to communicate without screaming fits and violence?