My Life Through The Eyes of My Camera
We learned about a year ago that Julianna is coping with SPD - Sensory Processing Disorder. Recently we've learned as well that she is high functioning Autistic. This explains a lot of issues with her that we've encountered. Everyday we go through meltdowns and many other things. Juli loves photography like me. We share this beautiful hobby to help her cope with her day to day issues. I share our stories here.. Join me in my life with my special and amazing Juli.
Thursday, 6 November 2014
Bittersweet....
Sunday, 2 November 2014
My Princess, xoxo
Sunday, 26 October 2014
When beauty presents itself :)...
Thursday, 23 October 2014
Yummy :)!!
Wednesday, 22 October 2014
bloglovin Test
Juli made this at school :)
Monday, 20 October 2014
Not sure how long till I see this again....
Sunday, 30 March 2014
Choo-choo!
Sunday, 23 February 2014
She seems to love Cheerleading, but transitioning isn't her strong suit...
Monday, 27 January 2014
Lots of Time..... Lots of Answers....
I am thankful to be able to say that mine finally are.
Ever since Juli was diagnosed with Sensory Processing Disorder or Sensory Integration Disorder we were always told that this was not a legal diagnosis in the province of Quebec. In the rest of Canada it was and in all of the United States, just not in my province - the province of Quebec.
The main reason for this is because most of the time SPD is not alone. Usually SPD is accompanied with something else, some other diagnosis. So the Quebec government doesn't allow it to be diagnosed separately as a legal diagnosis on its own.
This has made things kind of difficult for us over the past year. We have done weekly private occupational and speech therapies for Juli. Because SPD is not recognized, we can't apply for public OT, and putting her on the public waiting list for speech therapy would have taken two years. By the time her turn came up for speech therapy she would have been so delayed the damage that would have been done by waiting would take 10 years to reverse if it could be reversed at all. Same with occupational therapy. So since therapy was a necessity to help her with her issues private was the only way to go.
And she has made awesome progress over the past year. She is a different girl with the therapies. I have gone from being her translator so people could know what she is saying, to her being able to be understood by over half the people she encounters. This is so liberating for her and it makes her feel so good!! The look of joy on her face when someone understands what she said is just priceless.
But I have always had a feeling in my gut that something else was going on and that is where the answers that I mentioned earlier come in. First let me tell you to always follow your gut instincts. That is the advice that I was being given and I'm glad in the end that is what I did. I was also advised to enroll her in Summit school. A school for children with disabilities and delays. We knew that there she could grow and catch up at her own pace. So we followed the procedures to put her into Summit.
This meant we had to get a psychological evaluation done. I had been thinking about doing this for a while and a few people I know with special needs kids had advised I do it. But I knew it was very expensive and I wasn't sure about it. Juli's OT has always said that her sensory issues run very deep and she was recommending that we work on sensory issues first and then if there are issues remaining I could look into a psych evaluation at that point. That was the plan I was going to go with until I learned that Summit needed the Psych evaluation to admit her. Secretly I was actually happy about this as it was just the push I needed to do the evaluation and I knew now no matter what turned out I would have my answers. I was actually excited :).
And so the process started. Many appointments with the psychologist and a crazy month of December. We needed to go at Juli's pace and we needed to get all of appointments done before Christmas so that she could review everything and have the report ready for us by the first week of January. We needed to get the application into Summit that first week in order for Juli to have the best chance of being admitted in September 2014. And the psychologist definitely agrees that Summit School is the place she recommends for Juli to go.
It was a very busy month, but it was worth it. I feel very blessed to have met this Dr. She understands Juli very well and she helped us a lot. I explained to her a lot of the things that I was concerned about and she made it her mission to find out exactly what was going on with Juli. It felt so good to know that no matter what the report said at least I would know exactly what is going on with my Juli.
After many long extensive appointments and quite a few Saturday afternoons spent at the Psychologists office the time finally came for us to get our answers. You don't know how good it actually feels....
She explained that along with the Sensory Processing Disorder Juli can't control her emotions and has a lot of anxiety. The reason for this is because Juli has Autism. She is very high functioning, but she is Autistic none the less. This may sound crazy to you, but this makes me smile from ear to ear as this means that now we have a diagnosis that will allow Juli to get the help she needs through the public system.
After losing my first daughter I can definitely handle Autism. It won't be easy - far from it, but I can handle it!!
The psychologist referred us to an RDI specialist as she feels RDI (Relationship Dynamics Intervention) therapy will really help us and therefore help Juli. It will help us to understand Autism and Juli in particular a lot more and help us to be good role models for her. It will help us to be able to learn how to maneuver around the Autism and teach her properly without causing undue stress on her.
I am so happy about this and am really looking forward to this.
And another awesome thing that has happened since getting the psych evaluation is now we are being transferred to the correct department of the CLSC and we will have a social worker very soon who is going to help us get all the services for Autistic kids. We will apply for the TED program. And she will also help us apply for an Educator who will be giving us RDI therapy supplied through the government so at that point we can stick with public and we will not have to go private anymore.
And to top it all off, when Juli gets admitted to Summit in September of this year (I'm being optimistic), they have OT and speech therapy there as well, so we won't have to go private anymore. This will be awesome! She has wonderful therapists right now - don't get me wrong, but it is expensive....
We have applied for the Disability allowances and Handicapped allowances with both governments. The psychologist says she is sure we will qualify for both :). And until we receive an Educator that will pay for the private RDI therapies.
Everything is working out really well and is finally coming together.
We finally got our answers and I am happy that I did do the right thing and listen to my gut instinct :). Or mother's intuition. It's up to you what you want to call it and it's up to us to listen to it as I am learning we have it for a reason :).
Wednesday, 25 September 2013
Bedtime Getting Better :)
Saturday, 14 September 2013
Progress and then two steps back......
Friday, 28 June 2013
A Chapter is Closing....
Tuesday, 30 April 2013
Out of Bad Comes Good.....
That was a tough week. Having a "normal" sick child is hard in itself, but having an SPD child who is sick is a whole different ball game. We wanted to keep blankets and clothing on her so she wouldn't be cold and remain sick, but she wouldn't hear of it. She is somewhat sensitive to clothing and seems and tightness, but when she is not feeling well, this is basically multiplied beyond understanding. She would not wear anything or keep blankets on her. So I ended up being with her to make sure that she kept warm somewhat.
I had a few days where I pretty much didn't move off of the couch as she needed the pressure of my hugs to feel better. Deep pressure helps her to feel normal in her own body and when she was sick that was all she wanted. As well since I am like a security blanket to her ( I look forward to the time when her therapy resolves this need she has and she can cope better on her own), she couldn't handle my not being near her. So we were practically inseparable for 7 days straight.
It is like how a "normal" child is when they are sick multiplied by 1000. The one thing I was thankful for was that she constantly wanted to drink. She was going through a lot of water. This was a relief as the last few times she was sick getting her to drink was some of our biggest challenges. This time it seemed like all she wanted to do was drink. I was very grateful for this.
And the crazy thing is when she was sick she still wanted to go and do all of her normal activities Even though she didn't feel good and had a fever. She was asking to go and I had to keep telling her "no, you're sick" and she just couldn't process this and would go into a complete meltdown. So not only am I handling a sick child, but one that is going through complete meltdowns on top of not feeling well because of fever.
She even had stomach pains and was refusing all food. This reminded so much of Katie and I started seriously panicking. So much so that I was starting to think that I was going to be taking her to the hospital and I was praying that this was not the same thing that Katie had. I was literally freaking out inside. I had to hold it together though - for Juli.....
Even when she had the ear and throat infection in January it was not this bad.
By the end of that seven days I was having a bad case of cabin fever, emotionally exhausted and close to a break down.
I was so glad when the fever broke and we were symptom free for 24 then 48 hours. The feeling of relief was indescribable.
Since then it has been like one extreme to the other. She is better now and totally back to her extremely energetic non-stop self. For 7 days she barely moved off the couch and now she is literally bouncing off the couch. I am just so happy to have her eating again and back to herself. Every time she drives me nuts I remember that week.....
I took her to speech therapy last week and it turns out that the week she was so sick she made a small break through in her language !!! I noticed that when she started talking after recovering she was speaking a bit better and talking in better sentences. I was actually understanding a lot of what she said on the first try. She was actually forming and saying some sentences that were more than 5 words long.
I was so astonished and so very proud of her. I was practically walking on air I was so excited. She was actually talking about her environment and telling me what she sees and about things around her. She was actually using proper grammar! Even her therapist noticed that she had advanced a level... I'm so extremely proud and she is continuing to work on it and improve.
That is my proud Mommy moment of the week so far :).
Thursday, 18 April 2013
Natures Beauty.....Hanging Around....
I looked out my window one day a few weeks ago and these are what I saw. They both shocked me and captured my eye. They are amazing. I could not believe they were so big and beautiful.
The middle one reaches full down past the railing of my balcony. It amazes me how nature can create something so breathtaking.
| Beautiful Icicles |
I showed them to Julianna and she was in awe as I was explaining to her what they are.
They were especially beautiful on sunny days. The afternoon sun shines brilliantly in through my living room window and during those hours these sparkled and made a rainbow like pattern all around the room. It was truly stunning.
Wednesday, 17 April 2013
Doing her exercises.... Proud of my girl
This is amazing to me as Stephanie REALLY moves that swing when Juli is on it!! I went on one time to make Juli feel comfortable and I was dizzy within seconds of it starting to move and I almost fell off. This is probably because Stephanie is pretty sure that I have a mild version of SPD myself. But that is a whole other entry in itself which I will explore more later.
I couldn't believe that Juli went from planting that food on the mat every time to one day finally being comfortable enough to bring that foot up and secure it on the log swing itself. I was and am so proud of her!! Now she can really start getting the full benefit of what that swing is designed to do.
We are also working on leg and arm compression exercises. I hold onto her ankle and knees and push them towards each other. The pressure is supposed to help Juli to feel better. She is actually starting to really like them as she is now finally letting me do them with her at home and the last couple of days she has actually come to me and ASKED me to do them for her. Oh, I am so proud of her!! She also asked me to do the arm ones, but I am still learning how t properly do those ones so I couldn't do it myself for her yet. I told her I would learn those ones this week so we could do those for her too. She said that was ok.
Just had to share my sweet girl's amazing accomplishment :).
Tuesday, 16 April 2013
No New School.....yet.
It is a 5 1/2 and right now we live in a 4 1/2. This doesn't mean we get a lot more space. It just means that we have an extra room so we can actually put everything in it's own designated room and not have a desk in the kitchen or in our bedroom. This makes me very happy!
I mentioned to Stephanie (Juli's OT) that we signed the lease and the move is under way. She asked if Juli has to change schools and I asked why. She said she feels that the move, going away on vacation to a different place, and a change of schools will be too much for Juli to handle in this stage of everything with her SPD. As well it might set her back and push back some of the great progress we are making in therapy.
I told her that I probably could keep her in the same school, it would just mean a 35 minute drive to get her to school in the morning and the same back home. But of course I would do it, if that is what she thinks is best for Juli. She did. And so started the quest to see if I could even still register her for the next year or if it was full.
Turns out I was in luck. They still had a few spots left and so I filled out the paperwork (which I had almost discarded - thankfully not lol) and registered my daughter for 2013-2014. I am in a way very happy that she will be able to see Asha (her favorite teacher) each day. Even if Asha doesn't end up being her direct teacher she still knows the other two teachers and it will be a familiar environment while everything else is changing.
We'll see how the drive for me goes. I might have to plan to stay in the West Island during the three hours that she is in school. But that is ok as I have plenty of things I can do and a few friends I can catch up with :).
l'll also plan to make her OT therapy earlier in the afternoon so that I can pick her up from school on that day, take her to lunch and then take her directly to therapy. On other days we can do some play dates in the WI if we choose to or we can head home in the early afternoon as there is little traffic at that time.
I am not really worried about this actually. Not sure why, but I have a feeling things will fall into place. It may be a bit more traveling for me, but I know in my heart this is the best route for Juli.... and that is what matters most.
Monday, 8 April 2013
A tough therapy session....
Julianna's therapy sessions are getting tougher. I feel so bad watching her as I know she has to go through it. Her therapist (Stephanie) is starting to implement harder techniques as well as play activites. Juli obviously is not enjoying them as much as the play activites. Because of her SPD and lack of communication issues she is having a very hard time expressing how she feels.
Instead like everything else she is using me as her security blanket. I'm safe as I understand and "get" her. This is good that I (get) her as I can help her, but it is also not good as she needs to learn to comfort herself when I'm not there as I won't always be there.
Emotionally she is like a two or so year old right now and we have to understand this. She is doing what a child of that age would do. She may be 4 years old but she is learning at the level of a 2 year old.
Today was a very hard session for her. One of the toughest yet. The only productive thing she did was her "Mat man" drawing in the picture. This is her first real drawing that she has attempted that actually resembles a drawing. I'm so proud of her!!
Next session I'm going to have to sit out for a bit as she is not able to do a session by herself. The tough activites need to be done and she is emotionally having too difficult a time. She needs to learn to how to process her emotions and let Stephanie teach her how to do this.
So next session we start working on this. It going to be heart breaking for me but this is best for Juli.
Also on Wednesday she starts her speech therapy. I'm looking forward to this as I'm looking forward to her having the ability to express herself and the independence to do it.
We are also starting to build a sensory diet for her. She is both a seeker and an avoider so this will be difficult. But we are starting so that hopefully in the next few months we can put together a good sensory diet for her.
A lot will be happening over the Spring/Summer. We are now starting brushing and pushing exercises, and I will making some weighted exercises for her as well. Stephanie has also suggested a weighted blanket so we'll be working our way to that.
We are going to get her the help she needs.
Friday, 5 April 2013
C'est la Vie... And I'm happy!
This is my beautiful daughter Julianna. She will be four in July. She is the light of my life and she has just recently been diagnosed with SPD (Sensory Processing Disorder). And you know what..... this is ok! We can handle this!
After everything we went through with Katie, I'm perfectly fine with this. Mainly because going through things is part of having a child and I am happy and blessed that she is mine. I get the chance to help her learn to manage with this. I'm fine with that. I have been given a child who has particular needs because I know that I have the ability to take care of her. Maybe that is because I was raised in this world, having a sister with an intellectual impairment and having sensory issues as well as OCD myself.
So we begin this journey.
We have actually been living this journey since was very young, we just didn't realize what is was or more accurately we didn't know it was something. She has had "issues" since she was young. Things that we questioned and weren't sure why she did. Things like pushing her chest and stomach against anything she was near (table for example) and every strap that she was in. We made those straps as loose as they could be. She could practically get out of them, but she would still push against them.
We thought this was just a phase, questioned why it was lasting so long..... but figured it was still just a phase. Then the issues with the bath started to enter the picture. She couldn't handle having her hair washed. It got to the point that many days we could barely get her into the bath and she sounded like she was being tortured when we washed her hair. Now we realized she probably is in real pain. Brushing teeth are also a big issue. So is brushing her hair. Having a hair cut is almost impossible. And the list goes on......
It think it was all the meltdowns that she would experience during changing of situations and activities that made me think "is this really normal, none of her friends the same age do this". She would break down every day when it was time to go to school and yet she couldn't stop talking about going to see her teachers and her friends. She would melt down when it was time to leave school and go home. In fact she would pretty much melt down any time we had to go any where or when it was time to stop doing one thing and start another. Now these are meltdowns I am talking about - not tantrums. Big difference. This was an overload of emotions and it was literally to much for her to handle and she would just burst into tears and not be able to stop. There was no anger involved.
Things just kept increasing from there. It got to a point where we were going through 6-10 meltdowns a day and it was becoming as much torture for me to watch and go through it as it was for her to be going through it.
A few close friends of mine suggested I talk to an OT. Took me a long time to bring myself to do it as I really didn't think anything was "wrong" and I didn't want people to think I was looking for a "quick fix". But I finally made the call and that was the call that changed our lives.
It took me almost half an hour and I went through all my reason of why I was worried. Everything. She turned around and asked me a whole bunch of questions about Juli,her age, environment and what she does daily. As well as family history. The next thing she said was music to my ears...... " You did the right thing. It was good you called me. You are not over reacting. I'm pretty sure your daughter has Tactile Defensiveness." She went on to explain to me a little bit about what this is and gave me some research to do as well as some material to look up.
She said we would have to do an evaluation on her to confirm everything, but Juli sounds like all of her other sensory kids and we will do everything we can to help her and give her the tools to handle daily life.
That is exactly what we did. February 5th, 2013 we had the evaluation and Juli has been doing regular weekly therapy sessions with her ever since. I see her making changes, doing better in her sessions and her teachers are noticing her doing some things that she never did before. It is an amazing feeling. We have a very long way to go, but I know we will get there.
We are also starting weekly speech therapy sessions next week as Juli has some big speech delays. I know though in time those will be over come as well. That will also help her to feel more confident because she will be able to freely communicate what she is feeling. Right now she is very centered around me and that is because she feels that I am one of the few people that understands what she is experiencing. And since her speech is delayed not many people besides me understand a lot of what she says so therefore she feels most comfortable around me. I know once we give her the speech abilities that will help her to feel like she doesn't need me all the time.
It is a long road ahead and she will probably need weekly OT for the remainder of this year, maybe more, but I know that we will get there. Juli will always have SPD, but we will help her to feel more normal and gives her tools to handle life better.
I have a special sensory child, but that is fine, because I have a daughter again to love and cherish. C'est la vie, and I'm happy :).











