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~

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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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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 everyone down and then count them, so I was trying to keep her in my parents room with her favourite cartoon channel turned on. The dinner was served and again in an attempt to keep her inside I took the meal into the room. She somehow managed to go outside and sat on the dinner table with everyone else and remained seated until her meal was finished. I was surprised to witness this show of good behavior from her. This and some other significant changes in her behavior and preferences have made me realize that my daughter is growing up!

Lately I have been asked the question: ‘what were my daughter’s symptoms when she was first diagnosed? What therapies did she get? From where? How did her symptoms improve? How did I help her? Etc... So very quickly I would talk about this journey through the therapies!

In the last post I discussed about Point 0: ‘the before diagnosis Y’. Today let’s start with Point 1: the point at which we started noticing the Autism cues and from where her therapies started.

Point 1: Symptoms right after PDD-NOS diagnosis.

Y was 4 years old when therapies started. She had the following Autism Symptoms:

  • No eye contact 
  • Zero attention and sitting spans
  • No communication
  • Finger pointing only
  • Poor motor skills 
  • No spoon holding
  • Lining up objects
  • Laughing meaninglessly
  • Teeth grinding 
  • Hand flapping when excited 
  • Teeth clenching when anxious 
  • Throwing objects and creating a mess

So with all these symptoms we took her to AFIRM -Armed Forces Institute of Rehabilitation Medicine- where she got Occupational therapy twice a week for 30minutes. The OT used to fix her in a high chair. Following is the list of activities she used to do there:

  • Making a tower through blocks
  • Learning the use of spoon to eat lunch 
  • Threading beads
  • Lacing through holes

These things made her eye contact and the attention and sitting span a wee better. But since the therapies were only twice a week the improvement was very slow. We then found AREIC -Ali Rafay Early Intervention Center. It was like a school providing all the therapies under a single roof for three hours, five days a week. Her three hours were divided in an hour of OT of which fifteen minutes were dedicated to sensory room to calm the child down from any sensory overload he/she might be experiencing, an hour of Work (table top activities based on Applied Behavior Analysis (ABA) technique. Fifteen minutes of circle time, fifteen minutes of snack time, fifteen minutes of speech therapy, and fifteen minutes of play time. Every child had a picture schedule for all these activities which was set every day by the child before leaving for home so that he/she knew the schedule/routine for the next day. The routine remained the same for all days. Everyday, after completing each activity the picture was removed and placed in the pouch to represent that activity is finished (no more of it). Some parents use the picture schedule for home too to avoid meltdowns resulting from unexpected changes in the routine. 

Y has a good receptive memory and she learns very fast. At the time she was enrolled in AREIC she already knew her ABCs, Numbers, Basic shapes and Colors, maximum body parts, basic animals, a few fruits and vegetables. So when her Work Schedule was made by the Head Teacher it included things like:

  • Associations  cards(e.g. toothbrush with toothpaste, ball with bat, socks with feet, gloves with hands etc) . Learning was done by matching the cards correctly.
  • Sorting (e.g. sorting bathroom and kitchen objects). In this activity the kid is asked to insert kitchen related cards through the kitchen slot, and bathroom related cards through the bathroom slot). A parent can easily design this activity at home using a shoe box and pictures related to the thing you want your child to learn. Sorting can be done to differentiate between colors, shapes, fruits and veggies. The options are unlimited 
  • Matching activity which involved matching similar pictures
  • A puzzle (starting from an easy one and then increasing the difficulty levels as the child progresses
  • Writing on white board with a marker. This is a good starting point to develop pincer grip. Kids love to write on white boards. You can start with connecting two or three dots. Y started from there too
  • A picture story on any social subject
  • Then there was this book. What is it ? What color? It helped her to answer questions. Y has always been quick to generalize whatever she learned. Soon after we started that book she started picking up Radom objects at home and would ask me what is it, indicating that she wanted to play this game with me. She always answered correctly.

The Occupational Therapist assesses every child and based on individual needs makes an OT plan. So the OT included things like:

  • Threading beads
  • Making a tower
  • Cutting a paper
  • Buttoning 
  • Lacing
  • Sorting 
  • Pegs
  • Puzzles
  • Soft vs hard 
  • Wet vs dry
  • Writing on sand

The gross motor activities included:

  • Walking on a path with different hurdles several times
  • Tread mill
  • Trampoline jumping
  • Pulling a sand bag
  • Immitation by asking the child to immitate you while you point at different body parts and immitate various actions
  • Cycling 

     Then there were ADLs (Activities of Daily Living) which started off with hand washing, teeth brushing, opening and closing of taps. Wearing and taking off of a T-shirt, shoes, socks, pants, brushing hair, applying lotion etc. 

    As Y kept on achieving an activity, next was added like this things went on moving in the forward direction.

    The purpose of an hour of Work , which was divided by several breaks of course -you can’t expect any child to keep seated for one whole hour-  was to increase sitting, attention and concentration spans which did become better. As long as Y is kept busy in a new activity she can remain seated. The second she gets bored , nothing can bring back her interest in that particular activity. The trick to increase eye contact is to sit opposite the child and be at the same level as him/her so that when you are showing him/her pictures it’s at the direct eye level. Other trick is to give precise, understandable and direct commands which a child can easily follow. Since the processing of ASD children is relatively slow giving then a long ambiguous command confuses them.  For example, Y come over here, open the tap, wash your hands … is a long command involving multiple steps. When marking this activity as a hit or a miss, you would always end up marking it as a miss because the child was unable to follow such a command. So breK it down in multiple short  and easy steps and then evaluate each step individually. Y come over here is one command, open tap second command, pick up soap fourth command, apply soap fifth command, wash hands sixth command, close tap seventh command. This break down depends on your child’s ability to follow commands. I started Y with such a large break down and now I only have to say Y wash your hands and all the steps are covered in this single command. 

    Newly diagnosed kids who are either non-verbal or having no previous learning experience or both are first taught pointing.

    Soon Y was started on a proper syllabus and then shifted to a Remedial class room.

    If you are taking your child to a facility then the specialists there will design your child’s work plan. But researching the web you can design easy to use DIY activities at home for your child using the materials and toys already available at home or easily available in the local market. 

    The key is patience. These things take time. My daughter took little time in learning orally but still struggles when it comes to motor skills. She can still not cut with scissors perfectly, she didn’t learn to tie laces or buttoning because her muscles are weak. Some kids I know are too good in gross and fine motors but academically they struggle. So the point is everyone is fighting their own battle, what we can do is learn through sharing.

    Now after all these therapies I can only say that we might have moved from Point1 to Point 2, but not any further than that. Still a long way to go.

    The post is already very long. If anyone wants me to elaborate on anything further or want me to write about any other topic so please leave a comment.

    Until then Adios !

    ~Sana~

    Disclaimer: The ideas and experiences presented in this post are specific to my personal experience of working with my daughter and should in no way be termed as professional advice!

     

    Posted in ASD, Autism, Autism Mom, Autism Spectrum Disorder, Awareness and Acceptance, Children, family, Life with Autism, Motherhood, parenting, PDD-NOS | Tagged , , , , , , , , | 1 Comment

    How it all started!

    There was a time when Yusra was newly diagnosed with Pervasive Developmental Disorder Not Otherwise Specified PDD-NOS and I had no idea what it meant and what symptoms did it exhibit. After extensive online research I came to know about Autism Spectrum Disorders and that according to the latest Diagnostic Criteria PDD-NOS fell under the Autism umbrella too. Because I didn’t know what Autism was, I had no idea what cues to look for and when our daughter was being assessed for diagnosis I had to literally rack my mind to answer the development related questions directed at me. Now after all these years I feel like a champion in this field; not that my daughter is cured of Autism but because I have much knowledge about it now than I initially had.

    After getting excessive Speech, Occupational and Behavior therapies my daughter has overcome some barriers and now I am at a position that mothers of newly diagnosed kids ask me about our journey, Yusra’s and mine. So in this post I am going to discuss how my daughter was at the time of diagnosis and how far has she come and how!

    Point Zero:

    Y was suffering from a congenital gut disease for the first eight months of her life after which her issue was resolved through surgery. She was very very weak and her diet was minimal. All her milestones were delayed which we attributed to her gut problem. She achieved neck holding at around 10months, cut her first tooth at 15months, learned to sit without support around the same time, started crawling at 20months, took her first unaided step at 2yrs 3months, but her speech didn’t come. At one year of age she had said Mama, baba, dada, Allah. We are sure of it because just like excited first time parents we had recorded her words. Then by the time she reached her third birthday these words were lost and had turned into babbling and no meaning at all. Whatever she wanted she would ask by ‘ain ain’ leaving me to make guesses as to what she really wanted. 

    She could not chew food so I had to give her blended or mashed stuff which she would just gulp down. At the age of three I introduced her to roti, small bites, a few at a time with lots of chewing actions, from there she gradually started to move food around a bit in the mouth before gulping down because she knew she would gag otherwise. 

    Academically I had started teaching her alphabets, numbers and shapes when she first showed interest in her cousin’s color pencils. I brought a copy and a pack of color pencils and began teaching ABC’s with pictures and then we would color them (not that she knew how to hold a pencil properly). The same time she used to watch nursery rhymes on the iPhone which she dearly loved because I had been singing to her since her infancy. Her father downloaded some learning Apps by the BabyTv network (which was the only cartoon channel she used to watch).  

    She was a happy child from the beginning, a smile for everyone around. She responded to the lightest of sounds but because she didnot respond to her name being called, doctors insisted we get her hearing tested (something almost all ASD parents go though I guess). Her hearing tests were perfect! 

    She used to sleep on her father’s chest but would not sleep on mine. At around 1.5 years she learned to sleep on her own by taking a pillow of her choice. Even while visiting her grandparents place, she would choose a particular pillow based on the pillowcase she liked and wouldn’t let anyone else have that pillow. We would just laugh at her paranoia with the pillows. She didn’t like being held by anyone except her father and me.

    The only time she would throw a tantrum was at traffic signals when the traffic stops moving. 

    At the age of 3 years her baby brother came into this world and we though that she wouldn’t care much about it, being the carefree soul she was. But she would go near his pram slightly rock him for a few seconds than go about doing her own business. She never hit him. The six months when my son was an immobile baby she completed ignored his existence as if the thing lying on the bed coo-ing is not a human. But as soon as that tiny human started rolling over and crawling and cruising in the walker he became his arch enemy. The battle is still on after four years lol. 

    So at 3.5 years of age when Y wasnt talking we thought of taking action and took her directly to AKUH’s Rehabilitation Center and booked an appointment with the Speech therapist. It was the Speech therapist who saw signs of Autism in Y and asked us to see the Occupational therapist, who in turn asked us to go for the complete assessment so that she could be diagnosed. It was then and there we first heard the term PDD-NOS and Autism!

    You see her symptoms were mild, she wasn’t into spinning objects. She did like to make a tower out of the blocks and would also line up objects, mainly onions and potatoes from the pantry, but that’s what many typically developing kids do too, or so we thought at that time. She was obsessed with trains and nursery rhymes. We had no idea that a particular obsession or association with an object or toy, or lining up or spinning of things or self should be a cause for concern. 

    At the time of her diagnosis thankfully I didn’t go into denial. Infact both my husband and I heaved a sigh of relief because her diagnosis gave us direction of what to do next and how to help her!

    Since all cannot be said in a single post, stay tuned for the next part : The journey through therapies!
    Much love

    ~Sana~ 

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