Thinking in the abstract!

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I’m in my thirties. Although I still have a long way to go but I’m old enough to safely say I have gathered enough memories – both good and bad – to last me a life time.

I’m always overwhelmed by the fact that so much happens to a person in a lifetime. Every day there’s a new challenge, every person we meet gives us experiences, every year there’s a new addition to a family and/or a sad demise of a loved one or someone we’ve known. Somewhere I read or maybe it’s a line from a movie that every person we meet in life has a story and when two persons meet, their stories intersect and they also become a part of each other’s story. Their part maybe small but they do leave a long-lasting impact on each other.

Being a very anti-social person that I am, I always thought that the friends I made in school would be the only friends I’ll ever have. When we used to visit our maternal side of family every winters, I always used to think life would always be like this, playing/ chatting away with cousins, meeting all of mom’s siblings and cousins, being crazy, carefree. Those were the days!

Then we all grew up and some grew old. Relationship statuses changed. All friends and cousins got married, started their own lives. Our concerns have changed, priorities have changed, demography has changed and has it not been for Facebook, we wouldn’t even be aware about each other. Life as a whole has changed.

Now when I open my whatsapp, there are five or six new groups of friends that I made over the years after graduating from college. Each one of them was/has been a part of my life. I’ve learned something from everyone and have lots of cherishable memories that I can look back at and smile with joy.

Sometimes I feel as if I am living my life in chunks – childhood, adolescence, college, university, pre-marriage, post-marriage – with each chunk having some old characters (the constants in my life), some old characters that became distant and faded away over time and mostly new ones. It’s more like different episodes of a drama series. Whenever I meet or hear about any character from my past my mind instantly snaps back in that point in time where we met and it feels as if I’m physically transported back in time.

Relationships are an important aspect of a person’s life. We can’t live in isolation no matter how hard we try or how much we want. To want the company of another human being is ingrained in our very genes. Whenever we are happy we instantly want to share our happiness with others, and whenever we are sad we can’t grieve alone.

I’m usually very comfortable in my own company with my own thoughts but with the advent of the internet, I discovered a new me. I was never expressive in verbal communication, I shy away from social interaction even if it’s about talking on the phone. If Autism could be defined on one characteristic only then I would be termed as an Autist too. Some Autists who spent their lives being non-verbal gave voice to their thoughts through some form of written communication (through computers and special software’s). I too found a way of pouring down my thoughts through blogging, facebook and whatsapp. That’s the new, very interactive and vocal me most people know about.

Recently I heard about a death of a distant relative. It saddened me obviously but more than that it left me with a strange feeling. I can’t really describe it! The memory of that relative belongs to my childhood and I’ve come a long way since then and so much has happened it feels unreal that that memory actually existed. I’m feeling really strange right now , looking at my own memories like a third person, an outside party, in total disbelief ! That I guess is the absurdity of life, when one chunk ends and we step into the next one, we disentangle ourselves from the previous chunk and act as if it never existed until someone or something from that chunk of life comes up and transports us back in time.

Bear with me my friends, my mind right now is overflowing with memories and emotions that need to be let out to make space for new things. This blog post is just the first proof of my strange mind!!

Adios!

~Sana~

 

 

 

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​Developing a routine!

Consider a day, any day in your life. You plan your day in advance so that it can go smoothly and if anything unexpected comes along you usually have the ability to deal with it. For example, on an ordinary day you get up, take a bath, eat breakfast, get ready for school, university or office, have your means of transport all set and you go about your day as you had planned it. You follow this routine religiously throughout the week. What if on any day your car breaks down, you have only five minutes to decide how effectively you can commute to your work place before getting late. You might take a bus or a taxi or a lift from your friend. As adults we think up of ways to deal with contingencies. As parents we have many alternative plans because the number of contingencies increases in direct proportion to the number of kids one has.

 The thing is we plan for our entire family with kids having no idea how life is running so smoothly. We wake them up, make them eat breakfast, get them ready for school, teachers make them study, we set rules at home for play and study times and then finally we make them go to bed. Although they might not agree with our set routine but for their sanity and ours structure in life is important.
During an ordinary day , our NT kids are not really bothered by changes in routine. If anything unexpected comes along they might question about it and are easily satisfied with our answers. Problem arises when our ASD kids meet with a change they knew nothing about. They don’t have any means to comprehend how come there was a change in routine and how to deal with it. As a result they become highly anxious  which usually gives way to meltdowns. 
My daughter, for example, knows what to expect on an ordinary day, but if we make a plan of going out somewhere we have to prepare her in advance. She has to know whether we are going to her grandparents, or her aunt, or a shopping mall, or seaside etc. She knows the routes too so we cannot fool her. If Im getting ready to go somewhere without her, I have to tell her exactly where I am going , for example, market, hospital or a party and with whom she is going to stay (usually her Grandma or dad). But she has come a long way and is at a stage where she can be satisfied with verbal description of what to expect each day. Many ASD kids, especially those newly diagnosed, have no idea about set routines. In this post I will suggest a few ways in which structure can be added to their lives that will help both the kids and the parents like it helped me and many other ASD parents.
For newly diagnosed kids picture schedules are a must have. Pictures are available online all you, as a parent, have to do is set up a valid routine that you are going to follow religiously for your kid. Get or make pictures for each activity of that schedule which is very easy to comprehend by the child and paste this schedule in a place that is easily visible to the child. 
At home:

The schedule for the entire day at home can be like follows (you can make changes according to your lifestyle):

1. Washroom time

2. Breakfast time 

3. School/work time(if there’s any)

4. Bath time

5. Lunch time

6. Nap time (if there is any need)

7. Park time/ Play time 

8. Study/work time

9. Dinner time

10. iPad time 

11. Sleep time

This is a general schedule for the entire day. Each activity in the general schedule can further be broken down into smaller parts to help the child know what is expected of him in each activity. For example if it’s washroom time, paste a mini schedule in the washroom for the child to know what to do in the washroom. For example:
General schedule:


http://pin.it/AzWK6vo

Bathroom schedule:

                http://pin.it/9bpPIXd 


At school:

If the child in question attends any school or rehabilitation center then you can add a schedule for all the activities he/she is likely to do there. For example for a rehabilitation center the schedule could be something like this:
1. O.T time

2. Speech time

3. Work time

4. Snack time

5. Music time

6. Play time

7. Home time

For a school the schedule can be something like this:

1. Assembly time

2. Circle time (for Montessori classes)

3. English

4. Recess time

5. Maths 

6. Music time

7. Home time 

For work time at home:

Someone asked me how to manage a newly diagnosed child’s routine at home if he is not attending any kind of school or rehab? Well the general schedule for that child would remain the same as described above customized to the mother’s daily routine. If you are working with him at home make a work schedule something like follows:
1. Puzzles 

2. Numbers

3. Shapes

4. Colors

5. Alphabets

6. Writing 

7. Fruits/vegetables 

8. Animals/birds

9. Sorting objects (you can start sorting with two colors or two shapes)

10. Body parts

11. Matching objects (pic to pic etc)
These are just some examples of activities with which I started working with my daughter. Start with only two or three activities depending on your child’s level of cognition. Then add up activities one at a time up to five activities a day in work time. Give breaks between each activity and use reinforcers (candies, chips, m&ms, or favorite toy), and lots of verbal reinforcers ( high fives, good job, yay etc) to keep the child motivated. 
How to work with the child during the work time is a topic for another post. The purpose of this post was to show how schedules are setup to make life meaningful and easy for the ASD kiddos. There are a number of different schedules on the internet, especially Pinterest. Just type in picture schedules for Autism  or PECS for  Autism and your screen would start showing many pictures and schedules to choose from. 
Remember the important thing is to use the schedule religiously and after a while your ASD kiddo would’ve learned his/her daily routine by heart. I hope this post about setting up schedules for an ASD child were of help. 
Until next time 

Adios 

~Sana~

xoxo

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Bridging the gap!

(PC : http://www.123rf.com)

People have different reasons to log online to the World Wide Web but what I believe to be the beauty of the internet is the ease with which you can connect with just anyone around the globe based on shared interest and whip up a strong bond of friendship with people from different regions and ethnicities. 
It’s the world of technology where everyone hides behind their gadgets to live in virtual reality. While many debate that technology has ruined personal relationships among people (which I believe to be true) yet if the person sitting next to me is more comfortable communicating with his/her virtual friends than instead of wallowing about not giving me time I would indulge in some interest of my own. 
I consider myself a socially awkward person who cannot communicate effectively with just anyone so I hide behind the cyber world to get myself heard. And I enjoy that very much. The internet has helped me get in touch with not only Special Needs Moms but also other concerned care-givers from around the world and sharing my experiences related to Autism and TCHD with them and learning theirs has been a Wonderful experience. 
When I jumped on the Autism bandwagon I didn’t have anyone to turn to in my own community. I had no idea about who were the game changers in the field of Autism. One reason was I used to hide my daughter’s diagnosis. The frustration and depression kept on building inside me making me snide and irritable and very much negative. I’m not that person and even if I am I don’t want that side to wake up and engulf my present persona. One day things got too much for me and I let go. I created this blog and kept on posting for two three days and let it all go. I told my story to the world and felt thousand times better. 
I have always believed that whatever knowledge a person has it should be shared because there are others who are not courageous enough to talk about their issues due to social norms maybe or family pressure. There should be someone to stand for all such people. As I told earlier I’m a very bad conversationalist but I can pen down my feelings and thoughts and that’s what I have chosen to do. 
As a result moms of many newly diagnosed Autistic kids have started asking me for tips and suggestions and anything that they can use to help their children. I was lucky that my daughter just had PDD-NOS and not classic Autism. Although her diagnosis of PDD-NOS means she’s split between the two worlds: the world of Neurotypicals and the world of Autism. Autism is Autism no matter on which point of Autism a child stands. For the Autism world my daughter may be close to NTs but for me handling her daily issues is still a constant drag and top priority due to which my NT child has to suffer sometimes. To the NT world she may have behavior issues and milestone delays but for me she can read and learn just like any other NT child it’s just her behavior that goes wayward because of being on the spectrum.
I take her to mainstream school in the morning, stay with her in the class as a shadow teacher then cater to her Speech Therapy needs by taking her to her speech sessions. But the training doesn’t stop there. It’s an ongoing process. I’m grateful it’s just PDD-NOS! I’m thankful to Almighty Allah that she listens to me and that I’m able to keep her in check but that doesn’t mean that her Autism would ever go away. As she grows older she might learn to control her behaviors but that only time will tell. For now I’m glued to her 24/7. For now I can just share all the tips and tricks that helped my daughter so far without any guarantee that they would prove as effective for other kids as these were for her. 
In the present day there are a number of groups and pages and blogs that connect parents of ASD kids in various ways. Having something close to home was what was lacking. That’s the niche I am trying to target. To provide a platform for all SN parents in my region through which they can connect, share and learn from one another. 
In the next blog(s) I would be answering questions that have been recently asked in the hope that someone might benefit from them. Here I’d like to emphasize again that anything I share and/or suggest is based on my personal experiences and in no way can take place of a certified therapist!
Until we meet again…

Adios 

~Sana~

xoxo

Posted in ASD, Autism, Autism Mom, Autism Spectrum Disorder, Awareness and Acceptance, Children, family, Life, Life Post-op, Life with Autism, Motherhood, parenting, PDD-NOS, PDDNOS, technology | Tagged , , , , , , , , , , , , , , | Leave a comment

NT vs SN hospital encounter!

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Those who have been following my blog since the beginning of its existence must be used to my posts about hospital visits. To them this should not come as a surprise that this very post too is about an incident I witnessed in the hospital ward.

So Yusra has been vomiting since morning, we took her to the specialist right away who gave her medicines to be taken orally. The problem was how to give medicines when the child is constantly throwing up? After trying different strategies and home remedies at home we finally had to bring her to ER for hydration. Something which we eventually have to do and are always prepared for.
Having had the ‘bad-luck’ of experiencing many hospital stays, Y was quite skeptical upon seeing the Officer’s ward, nurses and the hospital bed. She knew what was coming and so was not even sitting on the bed while we waited for the nurse.
In the meanwhile we (yusra and I) had the opportunity to witness the bickering of the  girl on the next bed. She must be around 11 or 12 and had also been advised hydration through IV. The cannula had to be inserted and she wasn’t letting the male nurse to do this. It was funny, the bickering , the endless querries she was bombarding the nurse with. Everyone present in the ward at that moment was laughing at her anxiousness 🙂
The conversation between the girl and the male nurse went something like this:
Girl: ‘would it hurt?’

Nurse: ‘not at all but if you don’t allow me to pass the cannula your vomiting won’t stop’.

Girl: ‘would it hurt more or less than the injection prick?’

Nurse: ‘it wouldn’t hurt. You wouldn’t even know. Now stop squirming and keep your other hand away.’

The girl then tried hiding her other hand under her thigh, then tried several other positions but couldn’t help using it to stop the nurse from passing the cannula. Her dad was with her and tried sitting next to her to comfort her. But she said,    ‘ No, No papa you stay away from me, you make me more anxious.’
Nurse: ‘Sir! You should make a video of this and show everyone how annoying she is right now.’
Girl: ‘ No papa don’t do this.’
Then the problem was the belt tied around her wrist so as to find a suitable vein was too tight for her liking.
Girl: ‘Ouch ! This belt is hurting me take it away.’

Nurse: ‘If I untie it I wouldn’t be able to find your vein.’

Girl: ‘ Then loosen it up.’

Nurse: ‘ No! loosening it would kill the purpose of the belt.’

Girl: ‘Ouch! Ouch! Just remove it. It’s hurting me.’

Father: ‘Behave Z.’

Girl: ‘But papa this belt is hurting me.’

This went on for a while then thankfully the girl agreed to behave and let the nurse do his job. The cannula was passed.
Nurse: ‘See! It didn’t hurt at all, did it?’.

Girl: ‘No.’

The IV was attached.

Girl: ‘ Don’t make it go fast.’

Nurse: ‘The pace is normal, don’t worry.’

Girl: ‘No,no! It’s hurting me. Papa it’s hurting me, please make it go slow.’

The nurse slows it down a tad bit and goes away. The girl bugged her dad’s head off to make it go as slow as possible.

In the meantime another female nurse who was dealing my daughter came in. I held Y’s hand tightly while she passed the cannula and Y didn’t get much time to protest. Thankfully the nurse was skilled otherwise finding Y’s veins is a major fiat not everyone’s piece of cake. It was at that moment that I realized something. Autism has robbed my daughter from freedom of expression…

Anyhow after five minutes or so…

Girl: ‘I need a blanket, get me a blanket.’

After a while nurse brings a blanket.

Girl: ‘ Put it up until my knees. Yes, that’s it.’

After a few minutes…

Girl: ‘Papa! My stomach is hurting. Please sit next to me.’
So the father is sitting next to her while the girl has finally dozed off to sleep and here I am sitting with my daughter on the next bed thinking if only my girl could express her feelings properly, verbally, that’s all she was going to say and do too. And here I am wishing that she could tell me where it’s hurting, how is she feeling? How much does it hurt for every time she gets pricked by a needle? Which foods, and smells make her nauseous, which ones don’t?  Which medicines are good in taste and which ones are yucky? How slow or fast should the IV fluids injected so as not to make her uncomfortable?
Now that the girl is asleep Yusra too has acknowledged this fact and is saying ‘Girl neeno (her word for sleeping)’.

And yes she has also told me, ‘Nurse, hospital, injection, Patti (bandage). Doctor check check (pointing to the doc’s stethoscope)’.

While my Yusra may not know how to make a proper conversation or to express her self or her feelings, she still is talkative enough to communicate what’s on her mind. Many ASD children can’t even do that!

Remember though even no two ASD individuals are alike so this is just my daughter’s story! I just wanted to share the experience of two girls, both getting an IV injection through a cannula but one NT (Neurotypical)  and another SN (Special Needs) from a third-person’s eye!!
Stay tuned for the next blog.

Until then …

Adios!

~Sana~

xoxo

Posted in ASD, Autism, Autism Mom, Autism Spectrum Disorder, Awareness and Acceptance, Children, family, Ileostomy, Life, Life Post-op, Life with Autism, Motherhood, Neurotypical, parenting, PDD-NOS, PDDNOS, Play, Total Colonic Hirschsprung's Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , | Leave a comment

NT vs SN hospital encounter!

Those who have been following my blog since the beginning of its existence must be used to my posts about hospital visits. To them this should not come as a surprise that this very post too is about an incident I witnessed in the hospital ward.

So Yusra has been vomiting since morning, we took her to the specialist right away who gave her medicines to be taken orally. The problem was how to give medicines when the child is constantly throwing up? After trying different strategies and home remedies at home we finally had to bring her to ER for hydration. Something which we eventually have to do and are always prepared for.
Having had the ‘bad-luck’ of experiencing many hospital stays, Y was quite skeptical upon seeing the Officer’s ward, nurses and the hospital bed. She knew what was coming and so was not even sitting on the bed while we waited for the nurse.
In the meanwhile we (yusra and I) had the opportunity to witness the bickering of the  girl on the next bed. She must be around 11 or 12 and had also been advised hydration through IV. The cannula had to be inserted and she wasn’t letting the male nurse to do this. It was funny, the bickering , the endless querries she was bombarding the nurse with. Everyone present in the ward at that moment was laughing at her anxiousness 🙂
The conversation between the girl and the male nurse went something like this:
Girl: ‘would it hurt?’

Nurse: ‘not at all but if you don’t allow me to pass the cannula your vomiting won’t stop’.

Girl: ‘would it hurt more or less than the injection prick?’

Nurse: ‘it wouldn’t hurt. You wouldn’t even know. Now stop squirming and keep your other hand away.’

The girl then tried hiding her other hand under her thigh, then tried several other positions but couldn’t help using it to stop the nurse from passing the cannula. Her dad was with her and tried sitting next to her to comfort her. But she said,    ‘ No, No papa you stay away from me, you make me more anxious.’
Nurse: ‘Sir! You should make a video of this and show everyone how annoying she is right now.’
Girl: ‘ No papa don’t do this.’
Then the problem was the belt tied around her wrist so as to find a suitable vein was too tight for her liking.
Girl: ‘Ouch ! This belt is hurting me take it away.’

Nurse: ‘If I untie it I wouldn’t be able to find your vein.’

Girl: ‘ Then loosen it up.’

Nurse: ‘ No! loosening it would kill the purpose of the belt.’

Girl: ‘Ouch! Ouch! Just remove it. It’s hurting me.’

Father: ‘Behave Z.’

Girl: ‘But papa this belt is hurting me.’

 

This went on for a while then thankfully the girl agreed to behave and let the nurse do his job. The cannula was passed.
Nurse: ‘See! It didn’t hurt at all, did it?’.

Girl: ‘No.’

The IV was attached.

Girl: ‘ Don’t make it go fast.’

Nurse: ‘The pace is normal, don’t worry.’

Girl: ‘No,no! It’s hurting me. Papa it’s hurting me, please make it go slow.’

The nurse slows it down a tad bit and goes away. The girl bugged her dad’s head off to make it go as slow as possible.

In the meantime another female nurse who was dealing my daughter came in. I held Y’s hand tightly while she passed the cannula and Y didn’t get much time to protest. Thankfully the nurse was skilled otherwise finding Y’s veins is a major fiat not everyone’s piece of cake. It was at that moment that I realized something. Autism has robbed my daughter from freedom of expression…

Anyhow after five minutes or so…

Girl: ‘I need a blanket, get me a blanket.’

After a while nurse brings a blanket.

Girl: ‘ Put it up until my knees. Yes, that’s it.’

After a few minutes…

Girl: ‘Papa! My stomach is hurting. Please sit next to me.’
So the father is sitting next to her while the girl has finally dozed off to sleep and here I am sitting with my daughter on the next bed thinking if only my girl could express her feelings properly, verbally, that’s all she was going to say and do too. And here I am wishing that she could tell me where it’s hurting, how is she feeling? How much does it hurt for every time she gets pricked by a needle? Which foods, and smells make her nauseous, which ones don’t?  Which medicines are good in taste and which ones are yucky? How slow or fast should the IV fluids injected so as not to make her uncomfortable?
Now that the girl is asleep Yusra too has acknowledged this fact and is saying ‘Girl neeno (her word for sleeping)’.

And yes she has also told me, ‘Nurse, hospital, injection, Patti (bandage). Doctor check check (pointing to the doc’s stethoscope)’.

While my Yusra may not know how to make a proper conversation or to express her self or her feelings, she still is talkative enough to communicate what’s on her mind. Many ASD children can’t even do that!

Remember though even no two ASD individuals are alike so this is just my daughter’s story! I just wanted to share the experience of two girls, both getting an IV injection through a cannula but one NT (Neurotypical)  and another SN (Special Needs) from a third-person’s eye!!
Stay tuned for the next blog.

Until then …

Adios!

~Sana~

xoxo

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Posting Blues!

 


‘Sana! The posting signal has arrived, we have two weeks to pack everything and leave for the new place.’ Alan informs me sixth time in our nine year long marriage. 

Yes I know that people often get fascinated by the idea of a military life. To them it’s fun getting to live in different places, getting to furnish and decorate different houses in different ways, having the luxury of an independent life, with lots of traveling, partying etc. But they are in for a surprise! That part only forms a small portion of our lives.

Shivers run down my spine when I think about our fourth posting : from Quetta to Rawalpindi. It was a cold November night, the truck to pick up our cargo was due the next day and my hubby and I were busy in packing everything that was still left behind. My son was only a few months old and Yusra started throwing up pretty badly. When you have packed up nearly everything, tending to a sick child becomes very difficult. At that time she was recently diagnosed with Autism and her therapies weren’t started yet. Throwing up and loose motions on repeat had dehydrated her and both Alan and I didn’t know what to do. At the break of dawn we took her to ER got her hydrated through IV and came back. The truck came and for the next three hours I sat with my kids on the only sofa that belonged to the apartment while Alan was busy getting the truck loaded. A puking sick child on one lap and an infant (who was constantly trying to squirm his way down on the dirt covered floor) on my other lap, every second felt like an hour long. Sometimes you are stuck up in situations so badly that you can do nothing else but feel utterly helpless. After the truck was loaded and gone we again rushed her to the hospital where she spent the next six days on IVs and injectables. Thank God my sister lived nearby in the same city who sent us meals and looked after my little one. 

Since Alan had to report to his new duty in Rawalpindi and we had our tickets booked we requested the doctor to discharge Y and from hospital we directly took off for the airport to our new destination with no hope for any proper accommodation for the next two months. Thats how military life is! We get posted to different cities but have to wait for atleast two months for accommodation. The two months we spend in different messes, guestrooms, shelters whatever is available. We usually don’t have any choice. The houses we do get after weeks of waiting are usually not what one would consider living in under normal circumstances. 

And when you have toddlers at your heels nagging and arguing and wailing and complaining and pulling at your skirt and throwing up tantrums and making a racket you just go nuts. You become a shouting monster! That’s exactly what I have become these days. 

And when you have an ASD child who refuses to live in guestrooms and when shown the new house you are alotted , she refuses to accept it as her own house no matter how you try to make her understand. Things get frustrating when your ASD child enters a meltdown on seeing an empty house (not yet furnished with the stuff she is accustomed to seeing in her house). Then slowly and gradually as things start getting unpacked and the bedroom is set up with the same bed, with the same bed linen and pillows and cushions she’s comfy with, she starts accepting the new place. Thank God after the first thing, the sofa, was unpacked she finally stopped wailing and accepted the fact that this is infact Yusra’s new house!!

I have not yet tried to introduce the concept of postings to Y. She is usually good with traveling related transitions. But this time she gave me a tough time.

And here we are sitting on our recently unpacked sofa and refusing to go any where else while my son has gotten hold of some long forgotten toys and is busy setting up a mine field with his toys !! Grrr!!
P.S. did I forget to mention the part where your toddler interferes with packing, for every carton you pack there is another carton being unpacked by the toddler. And bouts of tantrum while packing unwanted toys, which somehow become hard to live without just because you decided to throw them in the carton of unwanted things. 

Thanx for bearing with my posting related rumblings!

Much love

~Sana~

Posted in ASD, Autism, Autism Mom, Awareness and Acceptance, family, Life, Life with Autism, Motherhood, Neurotypical, parenting, PDD-NOS | Tagged , , , , | Leave a comment

The journey through the therapies!

Just the other day we were invited over for dinner at my parents, there were other guests too. Since Y is in the habit of getting over excited at seeing other people, her best activity is to sit ev…

Source: The journey through the therapies!

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