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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    Autism Spectrum Disorder- Part 1

    This is a guest post written in Urdu language on Autism by a mom Rubeka Sikander whose child is on the Autism Spectrum. I found her composition comprehensive, loaded with information for those getting to terms with Autism for the first time. Here it goes!

    آج کی تحریر میرے لیے  بہت مشکل ہے.  جب انسان اپنے دکھ کے بارے میں لکھتا ہے تو الفاظ کا چناؤ بہت سلیقے سے کرنا پڑتا ہے، وگرنہ لوگ ہمدردی کی بھیک کاسہء دل میں ڈال دیتے ہیں.اور یہ سمجھ نہیں پاتے کہ  ہر دکھ ہمدردی سمیٹنے کے لیے ظاہر نہیں کیا جاتا. کچھ زخم دوسروں کو تسلّی دینے کے لیے کھولے  جاتے ہیں، اور کچھ دوسروں کی مدد کے لیے.

     

      ١٣ مارچ ٢٠١٦، ہمارے لئے ایک ناقابل فراموش دن تھا –

     

     اپنے بیٹے سے تمام تر محبّت  کرنےاور تعلیمیافتہ ہونے کے باوجود، میں  حقیقت سے نظریں چرا رہی تھی.میں ہی کیا ڈاکٹرز بھی اسکے بارے میں قطعی راے نہیں دے رہے تھے. اور اسکے مسائل کا ذمہ دار مجھے ٹہرا  رہے تھے.  میں بھی  اس معاشرے کے باقی تمام لوگوں کی طرح خود کو دلاسے اور تسلّیاں دینا چاہتی تھی. اور اس حقیقت کو جھٹلا رہی تھی جو پچھلے ایک سال سے میرے سامنے اپنی تمام تر سچائی کے ساتھ کھڑی تھی، میری توجہ مانگ رہی تھی کیونکہ کسی مسئلےکے وجود سے انکاری ہو کر اسے حل نہیں کیا جاسکتا!

     

    میرا جان سے پیارا بیٹا اوٹسٹک (Autistic ) تھا.

    اس بڑے سرکاری ہسپتال کے سائیکالوجی ڈیپارٹمنٹ کی سربراہ نے آخر میرے بیٹے کے پرچے پر وہ ٣ حرف لکھ دئیے جن سے میں اس طرح بھاگ  رہی تھی گویا وہ آسیب ہوں.

    پچھلے ایک سال میں جتنا میں ASD یعنی آٹزم سپیکٹرم ڈس آرڈر (Autism spectrum disorder ) کے بارے میں پڑھ چکی تھی، اب شاید اس معاملے میں میری معلومات ڈاکٹر صاحبہ سے ٢٠/٣٠ فیصد ہی کم ہوگی. لیکن میں طبیب نہیں تھی، ایک خوفزدہ ماں تھی. جسکے بیٹے کو ایک ایسے معاشرے میں رہنا تھا جہاں آنکھ میں ذرا سا ٹیڑھ  رکھنے والے کو “کانا”، ہر پاؤں ٹیڑھا رکھنے والے کو لنگڑا ، کم بولنے والے کو بیوقوف اور اکیلا رہنے والے کو پاگل کہا جاتا ہے.جہاں بیماری کو آزمائش نہیں، قہرِ خداوندی تصوّر کیا جاتا ہے-  خیر میرا بیٹا مختلف تھا. اسکا دماغ عام انسانوں سے مختلف تھا. وہ پاگل نہیں تھا ، منفرد  تھا! 

     

    وہ آج تک مجھےماں یا اماں یا ماما کہہ کر بُلا نہیں پایا.  جب وہ چھوٹا تھا تو ہر ماں کی طرح  مجھے لگتا تھا گویا مجھے بلا رہا ہو، لیکن بڑا ہوا تو علم ہوا کہ  وہ بس آوازیں نکال رہا تھا. اسے کسی چیز کی ضرورت ہوتی تو وہ صرف روتا تھا. نہ اسے اشارہ کرنا آتا تھا نہ ہی کوئی چیز مانگنا.  اسے لوگوں سے خاص طور پہ  بچوں  سے گھلنا ملنا پسند نہیں تھا. اسے مجمع پسند نہیں تھا. وہ اپنی ہی دنیا میں رہتا تھا جس میں نمبرز تھے- ٢ سال کے بچے کے لیے یہ غیر معمولی بات تھی کہ وہ شکلوں ، رنگوں، اعداد ،اردو عربی اور انگریزی حروف تہجی ، جانوروں، سبزیوں اور پھلوں کے نام  بیک وقت اردو عربی اور انگریزی میں جانتا تھا اور انھیں پہچان بھی سکتا تھا. اور یہ سب اسنے  ہم سے اور کمپیوٹر سے ہی سیکھا تھا. لیکن وہ نہیں سیکھ پاتا تھا تو بات کرنا. 

    میں ایک ماں ہوں اور ان تمام  ترتکلیفوں سے اسی طرح  گزری ہوں جیسے ایک ماں گزرتی ہیں. حساس ہونا میرا کمال نہیں، میرے لیے تکلیف دہ ضرور ہے. بیٹے کی پیدائش سے لے کر آج تک ہر معاملے میں بےحد حفاظت اور ضرورت سے زیادہ خیال رکھنا میرا شوق نہیں، میری فطرت ہے. جسکو بدلہ نہیں جاسکتا. پاکستان سے  جب مجھے پڑھے لکھے  لوگوں سے،  اور کچھ ڈاکٹرز سے اس قسم کے تبصرے سننے کو ملے کہ میرا بیٹا میری وجہ سے ایسا ہوگیا ہے، یا میرے پاس وقت نہیں تھا ، میں نے  اس سے بات ہی نہیں کی، لہٰذا وہ بولتا نہیں. یا میں نے اسے کمپیوٹر اور موبائل ہاتھ میں دے کر ایسا کر دیا ہے. تو میرے لیے ضبط کرنا  بہت مشکل  ہوتا تھا .

     

    <چونکہ ہر سال اپریل کے مہینے کو پوری دنیا میں  آٹزم آگاہی مہینے کے طور پر منایا جاتا ہے لہٰذا   میں آٹزم کے حوالے سے جتنی  معلومات اکٹھی کر سکی  ہوں آج وہ قلم بند  کرنا چاہتی ہوں، تاکہ عوام النّاس کو اس بارے میں آگاہی حاصل ہوسکے. اگر آپ نے “لائٹ اٹ اپ بلیو”

     “Light it up blue “

    کا نعرہ کہیں دیکھا ہو تو یہ آٹزم کی طرف ہی اشارہ کرتا ہے

      نیلے رنگ کو اس سے  منسوب کیا جاتا ہے کیونکہ لڑکیوں  مقابلے میں لڑکوں میں آٹزم کی شرح کئی گنا زیادہ ہے .میری کوشش ہے  کے زیادہ سے زیادہ معلومات کا اردو ترجمہ کرسکوں، لیکن بعض سائنسی اصطلاحات کا اردو ترجمہ ڈھونڈا مشکل کام تھا. لہٰذا انگریزی الفاظ   کے استعمال پہ میری پیشگی  معذرت قبول کیجیے.

     آٹزم سپیکٹرم ڈس آرڈر کو عام لوگوں یعنی نیورو ٹپیکل لوگوں کی زبان میں

    Neuro-Developmental disorder         

        یعنی “اعصابی  خرابی” کے طور پر تعریف کیا جاتا ہے،  یہ الگ بات ہے کہ اوٹسٹک لوگ (اور مصنف  ) اس تعریف کو کچھ خاص پسند نہیں کرتے. لہٰذا میں اس مضمون میں آٹزم کو خرابی یا بیماری کے بجاے بے ترتیبی قرار دونگی. اسے “سپیکٹرم” اسلئے کہا جاتا ہے کیونکہ یہ مختلف  مخصوص  علامات  کا مجموعہ ہے ، جس میں بول چال میں دشواری ،  دماغ اور اعصاب میں غیرمطابقت اور  بے ربطگی ، معاشرتی تعلقات  میں دشواری اور کسی بھی حرکت کی بار بار  تکرار شامل ہیں. لیکن ضروری نہیں کہ ہر اوٹسٹک فرد میں یہ تمام علامات ظاہر ہوں.   ہر اوٹسٹک انسان دوسرے سے منفرد ہوتا ہے.  آٹزم  بیماریوں کی شدت  کی طرح  کم یا زیادہ نہیں ہو سکتا -ہاں البتہ بعض  آٹسٹک افراد دوسروں کے مقابلے میں معاشرے میں زیادہ فعال ہونا سیکھ جاتے  ہیں. اور کچھ عمر بھر  معمول کی زندگی گزارنے میں کامیاب نہیں ہو پاتے-

    کچھ لوگ آٹزم کے ساتھ غیر معمولی صلاحیتوں کو وابستہ کرتے ہیں۔ اگرچہ یہ بات درست ہے کہ بعض اوٹسٹک افراد غیر معمولی  ذہانت ، یادداشت یا دیگر صلاحیتوں کا مظاہرہ کرتے ہیں لیکن اکثریت کے بارے میں یہ کہنا درست نہیں- آٹزم کی باقاعدہ تشخیص 19ویں صدی کی آخری دہائیوں میں ممکن ہو سکی، لہذا اس بارے میں کوئی حتمی رائے تو نہیں دی جاسکتی لیکن بعض محقّق مشہور موسیقار موزارٹ اور سیویج، اورکئی مشہور سائنسدانوں جن میں اینڈرسن اور نیوٹن شامل ہیں،  کے بارے میں یہ رائے رکھتے ہیں کہ وہ آٹسٹک تھے۔ یہ آراء اُن کی ذاتی زندگی، معاشرتی تعلقات اور کام میں انہماک کی وجہ سے مستند معلوم ہوتی ہیں-   بعض اوقات آئنسٹائن کا نام بھی اس زمرے میں لیا جاتا ہے، کیونکہ وہ پانچ سال کی عمر تک بول نہیں پائے، لیکن کچھ ماہرین اس رائے سے اسلئے اتّفاق نہیں کرتے کیونکہ آئنسٹان کے سماجی تعلّقات بہتر تھے-

     آٹسٹک لوگوں کے دماغ کی  نشو نما پیدائشی طور پر  عام لوگوں کی طرح نہیں ہو تی -انکے دماغ کے بعض حصّے عام لوگوں کی طرح کام کرتے ہیں، تو کچھ حصّے انکے مقابلے میں زیادہ. لیکن بنیادی فرق معلومات کی ترسیل اور تشریح کے عمل میں ہوتا ہے.   یعنی دماغ کے خلیات میں  آنے والی معلومات کس طرح آگے بڑھی  ، اور کیا رد عمل آتا ہے، وہ عام  لوگوں کے مقابلے میں مختلف ہوتا ہے.   اسکی وجوہات کا تعیّن کرنے  میں آج تک ڈاکٹرز اور سائنسدان کامیاب نہیں  ہوسکے. ما سواے اسکے کہ اسکا تعلّق -جینز(وراثت) سے ہے

    اس حوالے سے متفرق  سنی سنائی کہانیاں اور نظریات تو موجود ہیں، جن میں سے سب سے زیادہ شہرت آٹزم اور حفاظتی ٹیکوں (Vaccines ) کی تھیوری کو ملی،

      لیکن اس میں سے کوئی تعلّق  آج تک سائنسی بنیادوں پر ثابت نہیں ہوسکا.

    آٹزم کی علامات 18سے 24 ماہ کے دوران ظاہر ہونا شروع ہوتی ہیں کیونکہ اسی دوران بچوں کی زبان اور communication skills تعمیر ہوتی ہیں . لیکن زیادہ فعال افراد میں بعض اوقات کئی سال اور بعض اوقات تا عمر   اسکی تشخیص نہیں ہو پاتی . آٹزم کی تشخیص کے لئے کوئی مخصوص ٹیسٹ یا آلات نہیں جس سے اسکا حتمی تعین ہو سکے  لہٰذا  پیشہ ور ماہرین اپنے  مشاہدے اور تجزیے سے اسکی تشخیص کرتے ہیں .  والدین سے سوالنامے پُر کرواۓ جاتے ہیں اور بچے کا مشاہدہ کیا جاتا ہے. جس کے بعد نفسیاتی ماہرین اسکی  تشخیص کرتے ہیں اور علاج ترتیب دیتے ہیں. جس میں behavioral therapy (رویے سے متعلق مشق ) اور speech therapy (تقریری مشق ) وغیرہ شامل ہیں.

     

    آٹسٹک بچے بولتے ضرور ہیں لیکن بات نہیں کرتے. یعنی اپنی طرف سے بہت کچھ کہ سکتے ہیں لیکن  لفظوں کا باہمی تبادلہ نہیں کرتے. لیکن اسکا یہ مطلب نہیں کہ وہ محسوس نہیں کر سکتے یا انھیں بالکل  علم ہی نہیں ہوتا کہ انھیں کیا کہا جارہا ہے. وہ کافی  کچھ سنتے اور سمجھتے ہوے بھی جواب نہیں دے پاتے. اشارے کی سمت میں نہ  دیکھنا اور سمجھ نہ پانا ، مخاطب سے نظریں نہ ملانا  اور اکیلے رہنا بھی آٹسٹک بچوں کا خاص رویہ ہے۔  جو مخصوص رویے آٹسٹک بچوں سے منسوب کئے جاتے ہیں ان میں سے کچھ  مندرجہ ذیل ہیں.

     stimming (جسم کے کسی بھی حصّے کی غیر ارادی اور تکراری حرکت ) جیسے ہاتھ یا سر ہلانا، ایسا عموماً وہ پریشانی یا اضطرار یا خوشی وغیرہ کی کیفیات میں زیادہ کرتے ہیں.

    Echo lalia : یعنی  سمجھے بغیر بات دہرانا. آٹسٹک افراد عموماً اسکو اپنی مدد کے لئے استعمال کرتے ہیں. کیونکہ انھیں گفتگو  میں مشکل کا سامنا کرنا پڑتا ہے، لہٰذا وہ دوسروں کے کہے ہےہوۓ الفاظ کے ذریعے اپنی بات سمجھانے کی کوشش کرتے ہیں. اسی طرح  اگر جملہ مشکل اور طویل ہو تو آٹسٹک افراد اسے سمجھ نہیں پاتے. لہٰذا وہ بات دہرا کر خود کو وہ وقت  مہیّا  کرنا چاہتے ہیں جو بات سمجھنے کے لئے درکار ہے.

    جیسا کہ اوپر بتایا گیا کہ انکا دماغ عام لوگوں سے مختلف طریقے سے کام کرتا ہے. لہٰذا ایسے بہت سے  روزمرّ ہ کے  عوامل انکی سماعت، بصارت، اور دیگر حسّیات  پہ گراں گزرتے ہیں جو ہمارے لیے غیر محسوس ہوتے ہیں. مثلاً تیز روشنی، بعض آوازیں، ہجوم یا تیزی سے آتی ہوئی  معلومات یا  کچھ اور.

    Meltdown : جب آوازوں کا شور، ہجوم، یا تیز روشنیاں وغیرہ آٹسٹک افراد کی قوّت ا برداشت سے بڑھ جائے تو اکثر وہ ہوتا ہے جو نہ صرف والدین یا اساتذہ کے لئے مشکل صورتحال ہوتی ہے، بلکہ  خود آٹسٹک افراد کے لئے ایک بھیانک خواب ہوتی ہے. یعنی بے حد غصّہ، چیخنا چلّانا اور پھر رونا. meltdown کو قابو کرنا خود آٹسٹک افراد کے لیے بھی بہت مشکل ہوتا ہے.

    Source: Autism Spectrum Disorder- Part 1

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    Sargodha: A city of new beginnings!!

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    Excitement, dreams, aspirations, anticipation, apprehension, fear of the unknown, were among the many mixed feelings we had as we entered Sargodha.

    Making the decision to take this course (which brought us to Sargodha – the city of Falcons) was one of the biggest decisions we had to take after getting married. On one hand was Alan’s career and on the other hand was his daughter’s medical needs. After refusing twice, we finally took the plunge into the unknown and came here!

    Sargodha is a small city with limited medical facilities (to our liking atleast) and no known Autism specific institute. Before coming here my hubby had half-heartedly posted an Ad on an online buying and selling hub OLX for a speech therapist. Getting our daughter’s speech functional is our present short term goal since she was excelling in her previous Autism school. Mainstream schooling was like a far fetched idea , which I didn’t even dream of pursuing – having had one bad experience previously was enough of an eye-opener!

    So we landed here with a car overflowing with baggage and kids tired from a long long drive. We got a tiny two-bedroom apartment with spider webs clinging down from every nook and corner, minuscule critters scuttling freely on the mirk covered kitchen counter and no place to stand since there were cartons and furniture every where. That was the month of July, extremely humid and hot. My hubby worked like a horse for the next two days to make the place livable, while I concentrated on scrubbing the kitchen floor, counters and cabinets and made the kitchen functional. This is just a glimpse of Airforce life that plays on repeat with each posting.

    Life for the past nine months has been so ultra busy that blogging took a back seat. It has been a life changing experience for me atleast on so many levels. New place, new beginnings!

    With Alan completely immersed in a very tough and demanding routine, I found myself completely lost, alone and helpless within the first week here. I found that being a highly dependant and anti-social person with a big ego is a worst thing that could happen to a woman, especially in forces. I had taken driving lessons two years back from a driving school but never took out the car on my own. My kids schooling was about to get started and I had no arrangement for their commute. Having no real friends to guide me, I took a big gulp, got hold of the car keys and drove the damn thing one round around the base. It took me two days and two rounds to realize that driving isn’t that big a deal as I had made it. Since then the journey, my journey, of Independence started.

    During our almost nine month stay here, I socialized like never before, made new friends, partied hard, became my kids chauffer, did groceries, learnt many new tips and tricks of military life. In short, I learned my worth.

    Yusra found a great speech therapist from that online buying and selling hub OLX who initially gave home sessions spanning an hour which helped Yusra a great deal. She learnt to blow, something which she couldn’t do before. Yusra can now blow a whistle, blow bubbles ; blowing a candle or balloons is still a fiat though, but she will get there sooner or later. Due to us a few other families with special needs children got access to the newly hired speech therapist who was also a qualified special educator and was later on hired on contract for the special school on this base.

    The best part of our stay here was Yusra’s mainstream schooling. She got admission in the Base Montessori in playgroup ( because she couldn’t write independently). She got the exposure of a class full of NT kids, some of whom were skeptical of her odd behaviors, a few were indifferent and two or three girls felt it was their responsibility to look after Yusra lol. My daughter participated in the fashion parade, a poem on grand parent’s day, appeared in monthly assessments. Her oral is good since she can read. She even learned to write independently, even though her writing cannot be termed as neat, hehe, but it’s a big achievement nonetheless!! The greatest achievement of the entire tenure is she got promoted to the Senior Montessori. Yayyy!! The happiest moment of my life was to see the words ‘promoted to Senior’ on her result card and I couldn’t control the happy tears rolling down my cheeks. Being a mom of a special needs child, I know that she may not get admission in a new school on another base. The principal there may not be as considerate and the staff not that helpful as they were here , for which I’m extremely grateful. So I just want to preserve this moment forever. My joy at all her little and big achievements cannot be dampened.

    As we are packing our bags to leave Sargodha, it’s with a very heavy heart and in the hope that the best is awaiting us on a new base, in the new city. Keeping our fingers crossed!!

    ~Sana~

    P.S. How could I forget to mention the four seasons and four major earthquakes that we experienced here. As I mentioned earlier, it was extremely hot and humid when we came here. We had to keep the air-conditioning on most of the times. We do get plenty of rains here which is a blessing! The winters were not that cold this time around as we heard they usually were in the past years so the kids didn’t fall severely ill as they usually get every winter! Yeah got a few days of fog with only a day or two of zero visibility. I was excited like a child to see such fog lol. The hail storms came announcing the spring season and the city has sprung alive all of a sudden with vibrant colours and a large variety of flowers. I loved it and so did my yusra!

    The earthquakes were nightmarish but thankfully no major harm done. I have experienced earthquakes before since I come from a city known for earthquakes but those experiences dont even come close to these soul shaking earthquakes we got now. Maybe when we get old and have kids our perspective about everything change entirely! The summers are arriving as we leave Sargodha for the next course to take our place here. All the best to them! May Sargodha treats them well too!!

    Adios

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

    A New Dawn!

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    A new dawn, a new day,
    A new beginning!
    To love, to laugh
    To sing, to dance
    To sway with the rhythm
    And give life one more chance.

    To teach a few lessons
    And learn from past mistakes,
    To breath in some fresh air,
    And give it all it takes.

    To give a helping hand to the one in need.
    To forgive and forget, in order to succeed.

    Let’s hope, let’s pray,
    Let’s help, let’s dream.
    Let’s build a better tomorrow
    By working as a team!

    Let’s celebrate the beauty of life
    Let’s join hands to remove all strife!

    ~Sana~

    Posted in family, Life, new beginning, new year | Tagged , , , , , | Leave a comment

    Once Upon A December!!

     

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    As the month of December is nearing its end, I am filled with nostalgia once again. This is the month in which I embraced motherhood and held the little bundle of joy who had completed my being. Yes! This is the month in which Yusra came into this world!

    Throughout the month of December I have been racking my mind for some worthy topic to blog about but all my attempts have failed so far. I don’t know exactly how to organize the many thoughts that are fluttering around in my head, so for now let’s just go with the flow and see where my thoughts take me 🙂

    Dear Yusra!
    It’s going to be your birthday in a few days time. Time for celebrations yayy!!
    I’m addressing you in this post in the hope that one day you will be able to read it and know what your mother felt like while raising you up so far.

    From the moment I conceived you my life was filled with joy. Like any other mom-to-be my days were filled with anticipation of how my life would look like with a baby in it? Would I be able to take care of you properly or not? Am I going to have a girl or a boy? And then there were moments of excitement as I first felt movement in my tummy, followed by your kicks n punches. Your father and I used to closely follow your development, comparing every month with ‘typical development notes’ from the internet. Every thing seemed to be on track and never in our wildest dreams had we imagined that our life was going to be any different from the rest of the parents.

    The moment of joy when you opened your beautiful eyes in this world had soon turned into a nightmare, for which we were not prepared. Being it our first time, we were not trained to look after a baby. People’s experiences, internet and books on parenting were our guides. We were misguided on a number of places, but as I said we were new in this parenting world we didn’t know much about recognizing our own instincts. We relied heavily on the doctors. We had no choice. You were in intensive care fighting a deadly infection!! The only right decision we made on the seventh day of your birth was to shift you to AKUH, Karachi’s best hospital. The one thing I admire about AKUH is its after-care, especially in the intensive care unit. Anyway I don’t want to go into details of what happened and what went wrong or how things could have been handled differently. That stuff is of no use discussing any longer. The fact is you were diagnosed with Total Colonic Hirschsprung’s Disease (TCHD) and later on with Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and this is the reality of our family for the rest of our lives.

    Yes our life is a bit different from the rest of the Neurotypical families. Yes we don’t have the luxury to do go with the flow of this society. We always have to function within set boundaries. This is what I want the world to know. My daughter is and always will be a top priority in my life. She is dependant on me. Getting her independent in activities of daily living is my biggest goal. Reading stories and thoughts of Adult Autists who are faring well in this world gives me hope that one day you too would be able to speak your mind and let the world know how the brain of someone on the higher end of the spectrum works.

    If I am thankful for one thing, it’s that you have PDDNOS and not severe Autism, that you may have TCHD but you still have your ileum to absorb some nutrition. Things could’ve been much worse. Always be thankful for what you have . Believe me seeing other parents with severely impaired children makes my struggles look like nothing. We have many more days of joy and laughter than ER trips, IVs and medicines. I am thankful that while I had to impatiently wait for every milestone of yours, you did make it there eventually. You gave me all the reasons to celebrate your successes, like any other typically growing kid.

    Your superb memory, your intelligence, your bright smile, sparkling eyes full of wonder about everything under the sky, your patience, energy and strength while living with a life long physical condition, your perseverance and resilience to go on are some of the things due to which I can proudly say you are a wonder child!

    And hey you have a wonderful baby brother to keep a check on you. Yes he fights with you, but that’s a completely ‘sibling thing’. He loves you more and he too knows at this tender age when and where to act like a big bro and protect you, steer you away from danger. Know that life for a sibling of a child with special needs is much more difficult and on most occasions very awkward. While he can make his day productive by playing with kids in the neighbourhood, he has to remain indoors. So bare with the annoying little elf tagging behind you all the time because both of you are growing up fast and one day you will sit back and laugh at all the craziness of this age you guys are in now.

    I also want to take this opportunity to say sorry to you. Sorry for whatever you are going through. Sorry for the 22 first days of your life in NICU far away from my warm cuddles. Sorry for all the pricks on your tiny hands, feet and head due to the many IVs plugged into you. Sorry for all the pain that you have to endure at this tiny age. Sorry for not always understanding what you are trying to say. Sorry for not always having the energy left to take you to parks every day. Sorry for not letting you eat sweets and candies to your heart’s content. Sorry for not being the best of moms. I wish I had a magic wand, just a flick of which would set everything right for you.

    On a brighter side look at all the achievements you had this past year. You learned to write your alphabets and numbers independently. You learned to blow bubbles and a whistle. You learned to say many new words and sentences. You learned to sing along with your favorite nursery rhymes. You learned to initiate greetings upon meeting your favorite people – your dad and granddad. And you have also learned to open the refrigerator and scan it for something worthy to eat. See I keep a record of every little achievements of yours and celebrate them by sharing my joy with the rest of the world.

    One last thing! Your TCHD and ASD diagnosis broadened the horizon of my thought process. It made me more compassionate towards families of special needs individuals. It opened up new avenues of knowledge to tread upon. I had to share your story with the world so that others can make more sensible choices when faced with the problems we faced, so that they would know better, are better equipped to deal with a similar situation. I’m sure you would understand this one day and would assist me in advocating and raising awareness and acceptance of TCHD and Autism!!

    On your birthday here’s a small wish from me to you:
    May the wonder in your eyes,
    The music in your laughter,
    The brightness of your smile,
    The unbound energy in your activities,
    The beauty of your soul
    Forever be a source of courage and strength for others.
    May you be a beacon of hope, love and joy for those seeking guidance.
    May all your struggles come to an end so that you can lead a more fulfilling life.
    May the year ahead be filled with more successes and achievements than the year before.
    Amen!

    You do know how much I love you!
    Your mom!
    xoxo

    ~Sana~

    Posted in ASD, Autism, Autism Mom, Autism Spectrum Disorder, Awareness and Acceptance, birthdays, Children, family, Ileostomy, Life, Motherhood, parenting, PDD-NOS, Total Colonic Hirschsprung's Disease | Tagged | 4 Comments

    The unsung hero!

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    “A good father is one of the most unsung, upraised, unnoticed, and yet one of the most valuable assests in our society.”
                                                       – Bill Graham

    Whenever we think about unconditional love, our mothers come to our minds. So much is written about a mother, her sacrifices, her mentoring skills, her housekeeping skills, and her companionship skills that one cannot help but praise the wonder woman who makes our lives beautiful. On the contrary, there are a lot of sacrifices a father makes too yet these hardly get due attention. In most families, he is the sole bread-winner and he constantly has to plan and manage all the available resources alongside his wife so as to provide a safe and comfortable life-style to his children, often at the expense of his own dreams and desires. If a mother provides a safe haven at home, the father is constantly striving to make ends meet by taking all the stress of the outside world to provide a brighter future for his family.

    In the last post I paid tribute to my mother. This post is dedicated to my father, my superman, my unsung hero!!

    If I travel back in time, the earliest memory I have of my father was he scooping me up in the morning, taking me to the bathroom and washing my face while my mom was getting other four children ready. Maybe that was just once but the memory is etched in my mind. I was in kindergarten! From that day till the day I graduated, my father’s face was the first thing I saw every morning. I don’t know about my other siblings because they all left after college but I, who stayed the longest with my parents, have many such recollections.

    He always woke me up in the morning by gently massaging his fingers in my hair. Even when I was old enough to set an alarm for myself, I would always put the alarm for five minutes earlier and then wait for him to come wake me up. During the harsh winters of our city, Quetta, where the temperatures drop down to -13°Celsius leaving all water pipelines frozen, he would always keep a bucket of hot water ready for us in the bathroom. Yes even for my mom! My mom wasn’t acclimated to such harsh winters but I don’t recall him ever putting her through the ordeal of hauling water from the tank and then boiling it at the break of dawn. When I reached high school, he always had a pot of tea ready for us all at breakfast alongwith Quetta’s special naans (peta bread, sort of) and butter. When I reached University and had to wait at the bus stop for the bus, he always accompanied me and waited until I was safely inside the Bus.

    When I was a kid, I really bugged my parents for a bicycle until one day my father took hold of my hand and asked me to take a walk with him down the street to the market. I was clueless as to where we were going and then we stopped in front of the bicycle shop. I had the first bike of my life then. I know getting a bike was not that easy for him back then.

    Whenever I think of my dad, the smiling face of a handsome young man ( the one in the picture above) is what comes to my mind. His smile is the trademark that defines us too, something that everyone notices first thing about us sisters too. Unlike most of the fathers we see today, he never yelled at us, never spanked us, never did anything ( beyond occasional scoldings) that could terrify us and damage the sweet father-children bond. He had personality enough to keep us all in limits and disciplined without having to let go of normal childhood mischiefs.

    As I sit here writing about my dad I’m filled with warmth and happiness. Thank you Abbu for giving us a joyous life!!

    Love you!!

    ~Sana~

    xoxo

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