Back, in home sweet home

Back, in home sweet home where we can smell the ocean. My son loves to be near the ocean.  We take him for walks on the beach and to bath in the sea. Since we live near the beach when ever my husband can find time he takes him to bath in the sea. My son loves to play in the water.

Again, we have come back to our home country after living for six months abroad in search of better options for my son.  Another six months of valuable time gone. Still there is no hope for autistic children here either .In fact, every parent in this country is worried about their children’s future, as different colors of politics have separated a small population in different directions.   So in a nation with no bearing where would the alienated autistic children’s future lie?

Again, my son is back in home. Back to his sofa where he sits when I do house hold chores. But I’m hoping to fight our own battle. I’m intending to work with my son more intensely, may god give me strength to tackle all the things that I want to do in so little a time of only 24 hours called a day. If anyone can give me any tips on home therapy please..let me know. 

Another Birthday gone another year of hope begins

Another   birthday passed but the time has been running in slow motion ever since autism took over my son. Though in slow motion I’m glad it’s moving forward. As I hope every year this year too I'm hoping that this would be the year when I can reach out to my son and find a break through which would speed the pace of time slowly to make it move a little faster and then maybe to a steady pace. 

As hope is the only string we can hold on to when nothing is to be seen ahead.  I remind myself everyday that things are eventually going to get better. For now I’m happy that my son enjoyed his Birthday in his own way with his colorful many balloons that he loves so much.

Earlier I was looking for answers from others but now I realize I should find answers on my own. I relocated in search of more opportunities for my son to receive therapies but I find here also there is not much available but now I intend to stay in one place and try to bring a change in my son’s life on my own.  I’m planning to try a home program. I would be glad to know about home programs for autism children.  Thanks to a friend, one autism mom, for suggesting and giving  information about the son-rise program.

Hoping for the best

As autism prediction rises to 1 in 88 children still there’s no hope and not much awareness in where I come from.

 It’s been a long time since I’ve written in this blog dedicated to my son.  There’s been a political crisis in our country but it has nothing to with my not writing in the blog but it surely diminishes the slight hope of light seen for children with autism too.  There never was much help, treatment or intervention available but the ousted government was bringing development in all areas fairly fast.

As for my absence from the blog, is simply because of my frustration and despair that there was nothing happening and there was no change in our situation my son has sat at home for two years but now again we have moved to neighboring country me and my son. At least now I can take him for therapies. So once again my spirits are up and hoping for a good outcome.

Another year

Another year begins and again I’ve been contacting all possible institutions which could provide autism therapies but with no positive result.   There are no speech therapists or occupational therapists. The local schools say they are trying to start a class for autism children but they are finding it difficult to find teachers who are willing to join for the salary they are offering.  Last year also I got the same answer that they are looking for teachers.

Again another year would add to my son’s age without therapy and schooling. I’m looking for schools in neighboring countries too. Praying that we’ll be able to shift to another country this year where my son can attend therapies. The initial expenditure to shift to another country has enabled us to make the move so far.

In my search to find a foundation that funds autism children I found only few foundations that provide individual funding and those that does pay the funds directly to the medical institute or schools but since we need to go to another country to find a school or hospital and after they do the evaluation only we would know what therapies my son has to attend and the cost so I’ve not been able to apply for funding too. In my country medical insurance does not include therapies for autism.  

Just hoping the new year would bring a new change, 

We never know if he is really in pain or not?

Today again my son woke up with a limp. This is something that happens once in a while he’ll wake up with a limp and when I apply ointment it goes away in two or three days. What confuses me is that I still don’t have an idea about what makes it happen because, I can’t find any place in his leg where it hurts Earlier when it happens I used to take him to the doctor but  now I don’t as it has become something that comes and goes.

Sometimes my son gets this crying fit. He would cry very loudly since he rarely cries about anything this gets me very upset. When he is sick also he would only whimper but doesn’t cry much, so when he cries like this we take him to the doctor. On the ride to the doctor he would be quiet when we reach there he would start again. The doctor doesn’t find anything wrong with him so we return. On the ride back also he is fine. Then we realized that he wants to go on a ride. This also happens once in a while but every time we do take him to the doctor. We never know if he is really in pain or not? It’s so hard to find out what’s wrong and where it is hurting when my son is down with something. At times like that I feel very desperate and helpless.

My son's autism anxiety

My son gets very anxious when he stays awake for a long period of time or when he can’t go out for walk at his usual time and mostly he gets very agitated when we travel by plane.  Now we have started giving him medication whenever we have to travel by plane. Though the medicine is supposed to make him sleepy he would not sleep a wink in an aero plane.

For any reason when he gets his anxiety increases it has its toll on his every autistic behavior he wouldn’t sleep, he would flap his hands more speedily; he would get scared easily over anything and everything. He gets afraid of things he usually has no problem with but if he’s anxious even a small sound would make him jump. He even gets afraid of me or his father too. Whenever he gets scared of me I feel terrible that he doesn’t realize I’m his mother.

Also my son rarely cries even if he’s in pain he would  only whimper but when he gets very anxious sometimes he cries so loudly, crying and screaming would go together. I know there are moms going through much more when their children gets anxiety fits. If anyone is interested here is a link to an online program to overcome Child Anxiety.

Bedtime doesn't mean sleeping.

Everyone who reads my posts would know by now that me and my son don’t sleep at night. My son’s sleeping time has again shifted.  Earlier he used to sleep when the sunrises but now he stays awake till 8 or 9 in the morning and then goes to sleep. I wish the timing would rotate and adjust to night time but it’s only a wish that’s been remaining a wish all these years. There have been intervals in between when he did sleep at night naturally. This happened whenever we took him out of the country so this makes me wonder whether it has something to do with the environment.

A small step ahead

I have a purpose to learn to get along with what I don’t have and to find out what good I can make out of what I have. I believe and try to remind myself that the way I think would portray my life. I’m trying to find one way or another that would give me a lead or a thread to hold on to. May be one day I would succeed.

As I write in my blog about my situation I have tried to make them see, those who really can make a difference but they are all involved in their own turmoil.  But still I’m not going to give up. I don’t have the time, voice and resources to be an advocate in a more prominent way but still I have to fight my own battle. Recently I got a positive reply to enroll my child in the local school .That is by mid April they would arrange for  a teacher and give admission but being able to go to a school is not the only thing my child needs so still have to continue my efforts.

My son's Autism diagnosis

When  my  son  passed  the  third  year  of  his  age  and  still  did  not  start   talking,  a  local  doctor suggested  that  he  should  be  evaluated  for  autism  since  autism  evaluation   was  not  available  at that  time  we  took  him  to  a  neighboring   state  where  it  is  available.  After  that  we  have  taken him  once  or  twice  a  year    to  neighboring  States  for  a  few  weeks,  to  do  follow  up  evaluation and  give  therapies.  My  son  responds  and  shows  improvement  when  given  therapy  but  we  have not  been  able  to  keep  him  in  any  of  those  institutes  for  a  longer  period. During  these  sessions  I sit  with  the  therapist  and  my  son. I  do  practice  everything  I  learn  from  them  at  home 

  when  we come  back  but  I  have  found  that  he  responds  and  participate  more  easily  when  he  has  attend to  some  place  for  therapy.  He  loves  going  to  school  wearing  a  uniform  but  unfortunately  the local  schools  near  where  we  live  are  not  accepting  children  like  my  son. Their  reason  is  they  do not  have  enough  teachers  and  facilities  I  have  requested  permission  to  let  me  be  his  teacher and  attend  to  school  with  him  but  still  I  haven’t  got  an  approval  yet.

When my son drifted into Autism

I  have  no  idea,  when  my  son  started  drifting  into  autism. All  I  know  is  he  stopped  and  lost many  things  that  he  used  to  do  as a  baby  and  toddler.  He  had  good  eye  contact,  he  used  to smile  and  ask  people  to  carry  him  gesturing  with  his  hands.  He  used  to  say  and  wave  bye  when he  was  a  baby.  Later   he   stopped   giving   eye   contact.  He  even  started  to  say  a  few  words  but later  forgot  or  lost  his  speech.  We  started  noticing  some  unusual  behavior  around  3  and  4 years of  age. It  started  by  scribbling,  he  used  to  draw  circles  over  and  over  non top.Whenever  he  gets  hold  of a book, when one page finishes he turns to next page and like that he used to finish one whole book at one  go.  After  that  he  used  to  turn  pages  of  books  and  fold  the  corners  of  each  page  and  then he used to do something very unusual, he used to fill and block people’s faces in pictures. Slowly he lost interest  in  books  and  pencils.  Then he  turned  to  hand  flapping  and  still  does  it.   He  has  regained  his eye  contact  but  still  he  is  non  verbal  and  still  it’s  difficult  for him  to  hold  a  pen  or  pencil.

GFCF Dietary approach.

Dietary  approach  is  one  of  the  many  areas  among which research  is  being done regarding Autism.

Gluten  and  Casein  free  diet  also  known as  GFCF  is  based  on  observation  that  Autism children  easily  get  food  allergies,  yeast,  gastrointestinal  problems  and  inability  to  break down  certain  protein.  Since  evidence  shows  Autism  children  have  deficiencies  in  vitamins and  minerals  they  cannot  digest  gluten  and  casein  properly.  GFCF  is  the  removal  of gluten  (a  specific  type  of  protein  found  in  wheat,  rye  and  some  other  grains)  and removal  of  all  casein  ( a  milk  phosphor  protein  found  in  most  dairy  products)  from  the diet. 

Gluten   is  found  in  most  types  of  cereals  and  bread.  There  are  grains  which  do  not  have gluten  like  wild  rice,  corn,  buckwheat,  millet,  amaranth,  quinoa,  teff,  oats,  soybeans,  and sunflower  seeds.  Casein   is   present  in  milk  from  all  mammals.  It  is  found  in  dairy  products such  as  cheese,  milk  and  yogurt  also  present  in  emulsifying  and  binding  agent  in numerous  processed  foods

A day in my autistic son’s life

My   son  sleeps  till  noon  every  day . He  wakes  up  around  12 pm.  He  goes  to  sleep  between  3  and 4 am. He has always had sleeping problem. When he was a baby too  he  slept  during  day  and  stayed awake  at  night  as  if  he  has  to  stand guard  when  everyone  else  sleeps. I  put  him  to  bed  the same  time  every  night.  When  I  make  him  very  tired  before  putting  him  to  bed  he  would  stay much later  than  when  he  usually  sleeps.  Some  days  he  stays  awake  the  whole  night  and  sleeps  in  the morning. When I wake him up early, the whole day he would be very edgy, he gets scared of regular sounds  around  the  house  hold  and  when  I  take  him  outside  he  reacts  by yelling  to the  noise  of  vehicles. If  he  wakes  up  early  as  soon  as  the  sunsets  he  tries  to  go  to  bed  but  I  make  him stay  till  the  usual  time,  that  day  he  would  sleep  very  easily  but  after  2  or 3  hours  he  would wake  up  and  stay  awake.  Astonishing  thing  about  my  son’s  sleeping  is  he  sleeps  normally whenever  we  take  him  out  of  the  country.

My son and his father's connection

When  I  go  through  my  everyday  routine  trying  to  teach  my  son  self  help  and  doing  play therapy  activities.  I have  to  try  many  things  to  get  my  son's  attention  to  cooperate  with me.  My  husband  doesn’t  get  much  time  to  do  any  activities  with  him.  He  only  gets  time during  weekends  and  when  he  does 

Nature of my child

My son  is  a  loving  sweet  boy  by  nature.  He  is  friendly  with  anyone  who  shows  any  interest  in him.  He  loves  to  laugh  and  be  tickled.  He  loves  to  listen  to  music  watch  video  songs.   He  is  very  happy  when  I  include  his  name  in  songs  I  sing  for  him.  Though  physically  fit  and  healthy  as peers  of his own  age  his  autistic  nature  makes  him  afraid  of  heights.  He  is  very  sensitive  to  loud noise,  stepping  in  sand  with  bare  feet,  he  likes  to  watch  blinking  lights  and  likes  to  touch  and feel  the  texture  of  clothing.   He  is  always  very  careful  when  he  moves  around  to  avoid  objects in  his  way.  He  rarely  falls  down  because  he  is  afraid  to  try  any  activity  which  might  make  him fall.   Over  all  my  son is  a  very  calm  and  obedient  child.