To Grant Or Not To Grant, That Is The Question

grant

During the last budget presentation, Finance Minister Colm Imbert, announced what he referred to as an increase in the disability grants. He stated the age of eligibility will be removed allowing disabled and special needs children under the age of 18 to access it.

He proposed the ceasing of payments under the Special Child Grant ($800) and Public Assistance Grant ($1,150) and to bring the recipients of those programmes under the umbrella of the new disability grant with a monthly assisted-income of $1,500TT.

The Autism Community in T&T has been in the back burner by every single government up to date. The apparent increase in the grant (even though it will not cover more than 3 to 4 therapy sessions for the month) seems to have been a step in the right direction in order to assist families.

I believe in giving praise where praise is due. This announcement and the measure that will be implemented from January 2019 is an outrageous insult to the intelligence of hundreds of Autism families living in Trinidad & Tobago.

Maybe those citizens who are not familiar with the Autism Community and the serious struggles they go through, might believe this façade.

Let me state a few things that Mr. Imbert would probably like to know.

According to a meeting I had with the Disability Unit Director in May, 2018 the Special Child Grant has changed since late April 2018.  A means test has been introduced for ALL grants, including the Special Child Grant and Public Assistance Grant.

Some parents were subjected to a means test even before the changes took place officially. A parent cannot access both grants at the same time. On top of this, in order to qualify for this grant you must be living close to or below the poverty line.

Now, some of you might wonder: What is so wrong with introducing a means test if these types of grants are for people in need?

The problems that Autism Parents face every day is the fact that their children do not enjoy the same rights as neuro-typical children do in T&T. For example, they are unable to access free public education with qualified teachers (like all the average children are able to enjoy in this country). They are also unable to access free public therapy which is NOT optional for children with Autism.

So what all of this means? It means that an Autism Parent will have NO choice but to come up somehow with $10,000TT to $22,000TT per term to pay for a private school (where most teachers are not qualified) PLUS find a way to pay $300-$400TT per half an hour sessions for private therapy.

Past and present governments without any shame whatsoever, refuse year after year to take on their responsibility of providing these two basic rights to the citizens with Autism in this country.

Children on the Autism Spectrum need between 25 to 40 hours a week worth of therapy. So this means an Autism Parent will have to find over $60,000TT a MONTH in order to pay for education and therapy.

Of course, parents cannot come up with this money therefore a lot of these children are at HOME without the opportunity of knowing what a school is like or receiving any kind of therapy. We have a lot of single parents among us and some of them are also forced to take these children with them at work because they have no one to look after them.

Of course, this figure does NOT include rent/mortgage, utility bills, food, clothing, etc.

An Autism Parent who earns more than the stipulated maximum income for this new grant, CANNOT for crying out loud, be subjected to a means test when they have these outrageous bills to pay. It is absurd, merciless and inhumane.

It is ridiculous to state that a grant has been increased and yet introduce a stipulation that will stop Autism Parents from obtaining it.

Blocking access to grants and creating unnecessary barriers against the most vulnerable in society causes Autism Parents and their children to continue suffering in a system that does not understand nor wants to meet their needs.

I will continue denouncing any attempt that tries to create the illusion that children with Autism in T&T are being taken care of. Nothing could be further from the truth. And that’s the unvarnished reality of the Autism Community in our country.

Dealing With Stress & Depression

depression

Hi everyone, hope you guys are doing great. A lot has been happening in my life! And it is now that I have a little time to write this blog post. Between a full time job, a super-mommy of 3 wonderful (but quite demanding) Kings and running an organization , having meetings, etc. at the end of the day I am really exhausted but with a huge feeling of accomplishment. 🙂

I have been in contact with some parents recently and some of the conversations we had prompted me to write this blog post.

Mental health is one of those topics that are practically taboo in Trinidad. Some see it as a sign of weakness, others do not believe it exists and some are quite apathetic because they might not be directly affected by it.

I am talking specifically about a well-hidden giant called depression. And I am not talking about depression for children or adults on the autism spectrum but depression in us, parents caring for a child or children with Autism. It is one of those topics that if you happen to share with anyone one of the first things you hear is: “Think positive” or “You are too negative” or “You have no reason to feel this way”.

Of course, unless you walk the walk you have no idea and most of the time people love to offer advice in issues they do not really know about. Sometimes it is better to remain quiet and just lend as much support as needed, free of judgment.

There are many reasons why a parent caring for a child with Autism might be displaying signs of depression. Sometimes, it is not even a direct consequence of it. There are many parents who have been dealing with depression prior having children. But of course, the depression might exacerbated by the demands of raising a child with special needs in a country that has forgotten they even exist.

This blog is very personal to me because I have suffered from depression and anxiety for many years, even before I became a mom. My childhood/teenage years were unusual and difficult at times and there were times when I thought that I could never find something that could help me mitigate the way I was feeling.

I didn’t understand it then but after MANY years and with a little more life experience and wisdom, I was able to find the tools that would help me reach a state where I no longer feel those symptoms are part of my everyday life.

I understand that what it worked for me, might not work for others but perhaps it will so I hope the following information/tips can be useful. 🙂

EXERCISE & EAT RIGHT

Exercising has a powerful effect on your mind. It is not merely my opinion but it has been scientifically proven.

Exercising And Depression

When you exercise, you release endorphins (also known as the “happy” hormones) but also helps you gain confidence and takes your mind away from your problems, at least for a little bit.

Choose an activity that you will enjoy and that you will be able to sustain in the long run.

The way we eat, impacts the way we feel and even think. We have only one body and we should do everything within our power to properly care for it. I went Vegan some years ago and I never looked back. It was one of the best decisions I ever made in my life. I feel happier and complete since I made that switch!

GIVE SERVICE TO THOSE IN NEED

There is nothing that makes me happier than trying to help those who might need help. It is hard to explain the feeling but the closest I could say is that you are no longer the focus; you lose yourself in the service to others. It is a wonderful thing.

You are no longer the protagonist in this story but instead choose to focus in another person with (perhaps) greater needs than your own. Perspective changes everything and when a wounded heart meets another wounded heart, a unique healing process starts.

COOK A STORM

I find cooking to be a very relaxing and healing activity. I love cooking and I love to experiment in the kitchen. Our 3 Kings are willing guinea-pigs in my Vegan food experiments! *evil laugh*.  There is nothing that brings me more joy than seeing my boys enjoying the foods I try to make and when I see them happy, I automatically get happy too. You can check what I cook on my Trini Vegan blog. 🙂

pizza

According to Jacqueline Gollan, associate professor of psychiatry and behavioral sciences at Northwestern University Feinberg School of Medicine in Chicago:

Cooking and baking are pursuits that fit a type of therapy known as behavioral activation. The goal is to alleviate depression by boosting positive activity, increasing goal-oriented behavior and curbing procastination and passivity.

If the activity is defined as personally rewarding or giving a sense of accomplishment or pleasure, or even seeing the pleasure of that pumpkin bread with chocolate chips making someone else happy, then it could improve a sense of well-being,”

Mental Health Through The Kitchen

KEEP YOURSELF BUSY

For me, this is one of the most important things that have helped me. When you’re busy doing things that are constructive for your life and the lives of others there is little time to entertain thoughts that are not conducing to your growth or happiness.

Keeping yourself busy is not only a form of distraction or tricking your brain but also a great way to feel amazing about yourself and what you are accomplishing!

Yes, you read well what you’re accomplishing because every single day you wake up when you don’t feel to wake up, put your clothes on when you don’t feel to put them on ..and with a brave face go about your day in the BEST way you can. Kudos to you!

CHOOSE TO PUT THE GLASS DOWN

There is a famous story that says…

Once, a professor began his class by holding up a glass with some water in it. He held it up for all to see and asked the students, ‘How much do you think this glass weighs?’ ‘1 pound!’ ….’2 pounds!’ …..’3 pounds!’ ……the students answered.

‘I really don’t know unless I weigh it,’ said the professor, ‘but, my question is: What would happen if I held it up like this for a few minutes?’ ‘Nothing’ the students said.

‘OK what would happen if I held it up like this for an hour?’ the professor asked. ‘Your arm would begin to ache’ said one of the students.
‘You’re right, now what would happen if I held it for a day?’ ‘Your arm could go numb, you might have severe muscle stress & paralysis; have to go to hospital for sure’ ventured another student. All the students laughed.

‘Very good. But during all this, did the weight of the glass change?’ Asked the professor. ‘No,’ replied the students.’ ‘Then what caused the arm ache; the muscle stress?

Instead, what should I do?’ The students were puzzled. ‘Put the glass down’ said one of the students. ‘Exactly!’ said the professor. ‘Life’s problems are something like this. Hold them for a few minutes in your head; they seem OK. Think of them for a long time; they begin to ache. Hold them even longer; they begin to paralyze you. You will not be able to do anything.’

It is important to think of the challenges in your life, but EVEN MORE IMPORTANT to ‘put them down’ at the end of every day before you go to sleep. That way, you are not stressed, you wake up every day fresh, strong, can handle any issue, any challenge that comes your way!

Remember friend- PUT THE GLASS DOWN TODAY!

Depression is one of those battles that many people will endure for the rest of their lives. The fears, the demons, the monsters will always be there trying to paralyze us and make us feel like what we are doing isn’t good enough and never will.

And that’s where that inner voice inside each one of us needs to start developing. At the beginning that inner voice will simple whisper but with time and lots of self-care that inner voice will become so loud and firm than it will triumph over any other that tries to distract us from becoming the best we can be.

Sometimes, you might also need the help of a professional if your depression is beyond what you can control or manage. And no matter what everybody else says around you, seeking help IS the RIGHT thing to do. It is NOT a sign of weakness but a sign of STRENGTH.

YOU ARE doing an amazing job with your child under difficult circumstances.

YOU HAVE the right to let your emotions out whenever you feel to do it.

YOU ARE WORTHY.

YOU ARE LOVED.

Earthquake Preparedness Guide For Autism Families

Earthquake Preparedness Guide For Autism FamiliesOn August 21st, 2018 Trinidad & Tobago suffered one of the largest earthquakes in our history (6.9 magnitude). The epicentre of the ‘quake, which was recorded in Venezuela, registered a magnitude of 7.3 on the Richter Scale. However, the most catastrophic of all took place in 1776 that measured 7.9 and destroyed St. Joseph.

Experiencing a natural disaster of this magnitude can be very traumatic for anyone, let alone for children/adults who are on the Autism spectrum. I would like to share some ideas and tips on how to prepare in case another earthquake (Or any other natural disaster) hits T&T.

I know for a fact that some people do not like to entertain these kinds of thoughts, but I believe it is important to think and plan ahead so we don’t panic in an emergency situation and we end up making things worse. We need to have a clear mind and plan so we can help ourselves and our children.

Shall we start?

REMAIN CALM

In my experience, children on the spectrum mimic a lot of our own behaviour. So try your best to remain calm and positive so your child does not “feed” from the anxiety you might be experiencing. I know it is easier said than done but the way your react will have a great impact on your child and the way he/she will experience it. Keeping calm can be in itself very reassuring for a child/adult on the spectrum.

CREATE A PLAN

We all know that uncertainty is one of those factors that children on the Autism spectrum do not handle very good and well… earthquakes are unpredictable. Sharing with your children possible scenarios and a family evacuation plan can help your child/adult to know what to expect and what to do and not to do.

Let them know where all the safety tools such as first aid kit, flashlights, matches, and so forth are located. Allow your child to be curious and get involved.

Now, I understand all of this will depend on how functioning your child is and I know you might also worry that talking about it and explaining this to your child might cause some unnecessary stress- it is completely understandable.

Having said that, think about it in these terms: You can either share with your children a safety plan so they can follow through or they will have to endure the experience, the trauma + anxiety of not knowing what is happening in such emergency and make things even more difficult.

Let your child ask you as many questions as he/she desires and be open to answer any concerns/questions they might have. Keeping the communication line open is extremely important.

Make sure to teach your child one parent’s or relative’s phone number and send a letter to your child’s school on the type of behavior to look for in case of an earthquake (This is particularly helpful if your child attends a mainstream school) and the tips they need to follow in order to assist your child in such event.

Do not be comfortable with just sending the letter, make an appointment with your child’s teacher and principal and go through the procedure together.

CREATE A SOCIAL STORY

For children/adults who are on the lower-end of the spectrum and might not be verbal, you can download pictures that can recreate emergency plans or create a social story/book that can give a step by step tutorial on what to do in the event of an earthquake. Read the booklet together as often as you think is needed. This format can also benefit children/adults who are on the high-end of the spectrum since they are visual learners. Social stories are great teaching tools for individuals with Autism and can help alleviate anxiety and stress.

If your child is not verbal, please consider getting a medical ID bracelet/necklace with your child’s personal information, medications and any other medical condition they might have that can be useful in case of emergency.

The Autism Parents Association of Trinidad & Tobago (APATT) created two social stories that can help you teach your child about earthquakes in T&T. Make sure to click on page 2 for the second story as well. (You can link to their page if you would like to share but please do not copy/paste the stories as your own).

HAVE ALL YOUR MEDICAL RECORDS SAFE

Sometimes when we are in a hurry from one therapist to another, we might misplace or put medical records somewhere that it is not safe- vital information that we might need in case of emergency. Please try to take a day where you can put all your child’s medical records including contact information of all doctors and professionals in a water-proofed folder so in case of an earthquake or any other natural disaster, you can quickly grab it and go.

This is especially important in Trinidad & Tobago where medical records/files are lost all the time!

PREPARE A 72-HOUR KIT

There are many resources available online that can list all the items needed for a 72 hour emergency kit. However, you should adapt it according to your family’s needs.

Let your child help you with the preparations, and again even though you might think it might stress him/her, being prepared for a situation of this magnitude will actually cause him/her to feel safer (Knowing you guys are putting things in place to deal with the unpredictable).

Make sure to have your child’s favourite toys, blanket or items handy. In my case, I know I have to stock up on peanut butter and jelly!

If your child is sensitive to noise, please carry their noise-cancelling headphones. Some years ago, I purchased two that are made specifically for hunting and it has been working quite well. If your child is sensitive to light, make sure to carry their sunglasses.

DRILL, DRILL & DRILL!

As an educator, we do evacuation drills at school many times. Having said that, I realised over the years that sometimes children forget very quickly what to do in situations of emergency, even if we have drilled it a million times! So drilling is an important aspect of anticipating how your child will react and what they might do during an earthquake. So after creating the plan, make sure to drill often so they know what to do.

Let them know in advance that electricity might go off, that the internet might go down and that everyone needs to keep calm so the workers can assess the situation and try to restore services as soon as they are able.

Do not provide any time-frame since doing so, might create an expectation that you might not be able to fulfill.

HOW TO COPE WITH THE AFTERMATH

Every child is different; so they might cope with the aftermath of an earthquake in different ways. Our youngest was scared and cried a little bit. All of them continue talking about the earthquake until now. This is not unique to children on the Autism spectrum; this experience was quite traumatic for a lot of people.

Make sure to check your child’s behavior for possible stressed-related symptoms after an earthquake such as: crying, nightmares, being afraid to go to bed, afraid of darkness, clinging, bed-wetting, regression, mourning for the loss of a favourite item, etc.

What helped my youngest boy was a tight, long hug. The closeness assured him that things are safe now. So don’t be afraid to hug your child as often as needed (If they don’t mind to be hugged/touched and no matter their age). You can also spend extra-time with your child when you put him/her to bed and let them express how they feel (Talking about a traumatic event can be very therapeutic).

If they need to cry, let them cry. Validate their fears and reassure them at all times that things are going to be fine and that you have each other.

I hope this complete guide can help you and your family during an emergency situation.

Stay safe everyone!

IMPORTANT EMERGENCY NUMBERS:

Fire Service: 990
Police Rapid Response: 999
Tobago Emergency Relief: 211
Global Medical Response of T&T (GMRTT): 811
Office of Disaster Preparedness and Management (ODPM) Office: 640-1285
Office of Disaster Preparedness and Management (ODPM) Emergency: 511

MUNICIPAL CORPORATIONS DISASTER MANAGEMENT UNITS:

Diego Martin Regional Corporation: 800-DMRC (3672)
San Juan/Laventille Regional Corporation: 800-SLRC (7572)
Arima Borough Corporation: 800-2ABC (2222)
Tunapuna/Piarco Regional Corporation: 800-TPRC (8272)
Port-of-Spain City Corporation: 800-PSCC (7722)
Sangre Grande Regional Corporation: 800-SGRC (7472)
Chaguanas Borough Corporation: 800-DCBC (3222)
Couva/Tabaquite/Talparo Regional Corporation: 800-CTTC (2882)
Mayaro/Rio Claro Regional Corporation: 800-4MRC (4672)
Princes Town Regional Corporation: 800-PTRC (7872)
Point Fortin Borough Corporation: 800-PFCB (7322)
San Fernando City Corporation: 800-SCDU (7238)
Penal/Debe Regional Corporation 800-PDRC (7372)
Siparia Regional Corporation: 800-4SRC (4772).

Governments Answer To Special Needs Education: Keep Waiting

Governments Answer To Special Needs Education: Keep Waiting A few days ago, the results of the infamous SEA examination came out. Parents with tears in their eyes were hugging their children so tightly that they could hardly breathe. If I didn’t know we were in Trinidad, I would have sworn that these children just returned from fighting a long, difficult war in Afghanistan.

Instead, it is the picture of families overjoyed because their children had to pass a very long and brutal 3 hour exam in order to have the opportunity to receive a place in a secondary school. Obviously, we cannot even create a system where all the schools in T&T are equally “good”. So instead of focusing on the WHY this is the case and fix it, we send the sacrificial lambs to the slaughter to pay the price for the ineptitude of past and present governments.

Sometimes I feel Trinidad is stuck in an almost Amish-ambience. We seem to be stuck on time and we are not progressing with regards to certain mindsets. When many countries are focusing their energies and resources to try to cater for the needs of a variety of learners, we still measure intelligence through memorization.

What about the forgotten children who did not place in any school? Ah, I forgot that year after year they get a sympathy cookie from the Ministry of Education stating how concerned they are that some of these children could not perform as expected but that they are putting things in place to cater for these students. So thoughtful.

In one of the many meetings I had in the past few months, I was told by a high official that we have a great Student Support Services Division that are working tirelessly to ensure ALL children with Autism and other conditions are taken care of. In which planet? And yet, no one was interested in hearing the feedback from Autism Parents about Student Support Services or even hear the stories that hundreds of Autism families here in T&T have to go through because their children are unable to attend school.

It is so easy to pay lip-service and pat yourself in the back (Arrogantly) thinking that you are doing a good job. I think it is perhaps the number one hobby of most government officials. “We are so sorry”, “We feel so bad”, “We feel for the parents”, “We are putting things in place” like if saying *that* will make you stop your advocacy and activism.

It certainly does not stop this woman so until CONCRETE measures are put in place, I am not going to remain quiet. Stop telling children and families how sorry or bad you feel for YEARS. And START DOING YOUR JOB. You are being paid to do it and you are paid with OUR TAX MONEY to do it PROPERLY.

We are the ones paying the salary of these officials so don’t think for a second that we should allow ANY of them to think that we are begging. We are NOT. We are demanding what is the right of our children and of every child in T&T. A system in place where ALL children regardless of their condition can receive a proper, free public education in this country.

Most people do not know that a lot of children on the Autism Spectrum in T&T never put a foot in a school before. They do not know what it looks like; they do not know what is to have a teacher or be a student. They watch all of that through television. They do not know because they NEVER experienced it. No, we are not in the year 1818, we are in 2018. And still, there are no proper, free public schools that can cater for their needs. And yet, the parents are paying taxes to support an educational system that their own children are NOT benefiting from.

Why? Simply because we never had ANY government with enough guts to say: “You know what? Enough of this. This is not right. Time to put these families in the front burner! We will put X in place right now.”

The sad reality is quite different. It is cold, hurtful, crude but true: They simply do not care if our children suffer. When you truly care about something or someone, you simply do whatever it takes.

But there is no heart, and when there is no heart, there is no action.

But plenty words.

Helping Your Child Become Independent

Helping Your Child Become IndependentYour Highness #2 will be 12 in a couple of months, it is hard to believe. It seems like it was yesterday when I held him in my arms when he was born. But now, as he says he is a “big boy” and is already showing signs of puberty.

It is hard to explain how that feels, it is definitely a bittersweet (And sometimes emotional) experience particularly because he does not really fully comprehend what those physical changes entitle and that’s hard to witness as a parent … so his mind and body are maturing every day but at a different pace.

When we realised that out of our 3 boys he was the one that was on the moderate/low side of the spectrum (Mainly his communication), we started teaching him to become as independent as possible. He is able to do a lot of things on his own such as:

1. Bathe by himself.

2. Brushes his own teeth.

3. Makes his own bed.

4. Fold clothes.

5. Sets the table for lunch and supper.

6. Clears out the table afterwards.

7. Helps his younger brother to open bottles.

8. Cleans the table.

9. Packs groceries.

10. Carries groceries.

These things did not happen overnight. It has been the product of years of work and his willingness to “help” because he is “big”. Over the holidays, he will learn how to do simple tasks such as toast his own bread for breakfast, vacuum, etc.

If you’re raising a child on the moderate/low end of the spectrum, I have some tips I would like to share with you (From my own experience) that can help your son/daughter to become as independent as possible regardless of their ability to speak.

START AS EARLY AS POSSIBLE

We all know the importance of intervention for children on the Autism spectrum, younger they are better the outcome will be. However, I don’t want you to feel despondent if you did not start early or your child might be a teenager now or even an adult. It is NEVER too late to start!

First, it is extremely important to understand that just because your child might not have speech or his/her speech might be very limited does not mean they cannot understand what you’re saying. Therefore, always treat your child with the respect and dignity they deserve.

This means having a conversation with your son/daughter every day just like you are conversing with any other person in your family: looking at their eyes, telling them about your day, asking them about theirs, letting them know they are LOVED, IMPORTANT AND WORTHY to you.

Often times, some parents leave their non-verbal children very much alone in a corner without engaging them at all because they don’t know how to communicate with them or think their child does not understand.

Even if your child might not be able to reply verbally at your questions, it does not mean they don’t understand or they won’t enjoy your company and love. It is less about what you say, and more about how you are making them feel.

TEACH THEM TO DO CHORES

As I mentioned before, it is important to understand that it will not happen overnight; hence it is crucial to start working on those goals TODAY. Focus on one specific task at that time and work on it every day. Start slowly, if the task is to clean the table, go through the entire process in full detail. Have your child beside you while placing his/her hand next to yours and very slowly make all the motions to clean the table. Repeat it every day until you start seeing that your child is ready to try it on his/her own. It might take a long time or a short time, it all depends on your child but regardless of how long it might take, do NOT give up. Repetition is key and very helpful.

You can use the same approach to most things such as setting the table or even for personal hygiene such as brushing their teeth. Emphasis must be placed on ensuring you teach one task at the time, do not start teaching another until the one you’re practicing with your child is mastered.

Remember to be kind and patient. The chore will most likely not be “perfect” but that’s okay. The learning lesson here is for your child to become as independent as possible and can develop a sense of self-fulfillment. Praise initiative and willingness. Keep in mind that a person develops their self-image by doing things on their own opposite of having someone else doing it for them. Each case is unique, so you’re the best person to decide what and how your child will accomplish a task. Do not compare children or situations.

LET THEM CHOOSE

Giving them the opportunity to make simple choices helps them feel included and provides them with a sense of purpose. We let our son choose the clothes he wants to wear (They are age-appropriate) and when going out, healthy options for lunch or dinner. These options are usually between two items so he does not get overwhelmed. It makes him feel proud of himself, that he is accomplishing something important and most of all, that what he has to say matters.

RESPECT YOUR CHILD BY TALKING AGE-APPROPRIATE

Our middle King is treated like a regular 11 year old, meaning we do not talk to him like he is a baby (Baby-talk) because regardless of his struggles with communication we believe it is extremely important to treat your children with the dignity and respect they deserve. He is an 11 year old, not a toddler.

So yes we adjust our vocabulary (And sentence structure if necessary) to suit his communication challenges so he can understand better, but always keeping in mind that he KNOWS he is an almost 12 years old boy and wants to be treated as such everywhere he goes.

TAKE THEM OUT WITH YOU AND GIVE THEM SOME EXPOSURE

I think this is one of the most difficult things to do for Autism parents but particularly for those who have children who are on the lower end of the spectrum. They tend to have more frequent meltdowns due to their lack of verbal communication and they get frustrated very easily. Going out can be a real challenge. A lot of parents that I am in touch with choose to leave their young or adult child at home because they are afraid of the reaction their child might have thus becoming a very stressful experience.

I recall the days that our King #2 could not go to do grocery shopping or go out. He would get huge meltdowns everywhere we went. It was very hard (And that’s an understatement believe me). We could have chosen to leave the grocery and return another day (As we have done in a couple of occasions) but we realise the importance of having our son exposed to activities that are vital for independence one day. So we took him out at every opportunity we had knowing what we will face. It was indeed very stressful (I am not going to lie) but the constant exposure has been a tremendous help for him.

More exposure he received, more he was able to relate to the world around him, and develop a basic understanding of his place in this world.

Now at the age of almost 12, he can go anywhere with us without any meltdowns.

The only thing we all have to do as Autism parents is giving them that extra- gentle push which is vital for our children’s success. Often times, we might think our children “can’t” do X or Y (And we give up) without realizing that we are actually not providing them with the opportunities to grow.

Our children are indeed very much capable; it is just a matter of ensuring we are offering them those chances.

Where there is life, there is hope. Take it easy, your child is your gem and once you treat him/her as the precious jewel they already are, they will continue to shine.

Amazing Things About Being An Autism Mom

Amazing Things About Being An Autism Mom Today is Mother’s Day so I thought of sharing with you some amazing things I love about being an Autism Mom. There is a lot of humour in this post and a little sarcasm in the mix of course, so take it easy. *wink*

MY CHILDREN ARE MY STICKY NOTES

I don’t know about you, but when I am at work I need to write down almost everything, otherwise I forget…I think it is called um..let me think… yes… stress wink.gif that’s right. I wish I could take my 3 Kings at work because I know for sure they will keep me in check if I forget something.

When we are at home or outside, the only thing I have to say is: “Excuse me your Highness please remind to…” and they will automatically remind me. In one occasion, we forgot to collect a bag at the mall and thanks to one of my Kings, we came back to retrieve it. Another time (More recently), we forgot a whole trolley full of groceries in the parking lot at the supermarket (*laugh*, don’t ask!) but Your Highness #3 noticed and we flew (Well, figuratively) and we were lucky enough to get it back!

THEY ARE AS HONEST AS THEY CAN BE

Something you can always get from children on the spectrum is honesty, brutally honest to be exact. So yes, if you ask them if that dress makes you look old/fat/ugly they will definitely tell you. I think all Autism moms can appreciate that.

We already live in a sort of fake world where people do not necessarily tell you how they really see things or their sincere opinion, so having children who are not afraid to express their honesty (Diplomacy can also be taught along with honesty) is a breath of fresh air.

PEANUT BUTTER & JELLY KINGDOM

When Kings get fussy about my cooking and I am about to lose all my hair I grab peanut butter & jelly and problem solved. Ideal? Definitely not, but very handy for those days when you’re super stressed or your child won’t eat anything else. At the end of the day, they have to eat something, right?! They eat it in sandwiches, crix, toast, on top of pancakes and waffles as well. I recommend that you purchase (If possible) a natural peanut butter which basically does not have any hydrogenated oil and is just roasted peanuts.

Even though my Kings have been eating all the food I make, from time to time a little picky King #3 gives trouble so I always have peanut butter at home for one of those Hulk moments. I make some super-fast banana smoothies to go with it for a healthier meal.

SEEING EXCITEMENT ABOUT THE SIMPLEST OF THINGS

I love how my boys get excited about things that most children take for granted. Being a mom can be quite challenging (We all know that) but parenting children who are teaching YOU to enjoy the simplest of things is what life is all about. They keep you grounded, grateful and happy.

When a lot of boys of their age are expecting the latest gadgets or phones, my boys are just happy when we go out and do simple things together such as lip sync, going to the beach, when we find weird insects and take pictures, collecting seashells or creating homemade costumes using recycled materials.

PARENTING TO THEIR PACE

Everyone seems to be rushing in our very fast-paced world, like if there is no time anymore to sit down, talk, ponder or look at someone’s eyes and connect. What I love about being an Autism mom is that my world is definitely slower in pace compared to parenting a child who might be neurotypical however it does not take away my joy. Living a slower pace, allows me to bond with my boys in a very special way and be able to learn from them and the many wonderful things they teach me every day.

We celebrate improvements in penmanship or how great they are getting at drawing and colouring. I love coming home and seeing their work and how happy they are at their accomplishments.

Everything moves a little slower than most people expect but as an Autism mom I learned to realise that my children set the pace and we simply teach and guide them through it all.

There is no plane or train to catch, everything gets done in due time.

THEY MAKE MY LIFE MEANINGFUL AND COMPLETE

When I became a mother, I knew I wanted to become the best mom I could possibly be. I was just glad to know that my boys will have the wonderful opportunity to have both parents.

I grew up without my natural parents, and the loss of not having my own mother around is something that you never completely heal from. You miss someone you don’t remember and it made me realise that the bond between a child and their mother is so special that it goes beyond this life or memories.

I lost my mother at the tender age of 1 year old (She went missing during the so called “Dirty War” in Argentina back in the late 70’s when 30,000 people went missing) . I grew up with a wonderful grandmother (Who passed away) who tried her very best to be the most caring mother she could possibly be. She taught me everything about compassion through her example and care for others.

But it was only when I became a mom that I realised that the loss of a mother is irreplaceable and I wanted to ensure my boys can enjoy the blessing of a supportive mom who is always present, and not wonder how their mom’s laugh might sound like or their tone of voice, or their scent…as I have wondered many times myself. It was only when I became a mother that I realised how much I gained but also how much I lost as well growing up.

But being a mom isn’t about being stuck on what you might have lost… it is about creating those very special memories that your children will remember you when you are no longer here. Happy memories in which they can hold on tight when they need you the most… Memories that will help them navigate this world.

Memories in which YOU are always right there next to them, in every single step…whispering in their ear:

“Son/daughter…You can do it… I know you can… I BELIEVE IN YOU.”

Denial: Your Child Is On The Autism Spectrum, Time Is Ticking

Denial: Your Child Is On The Autism Spectrum, Time Is TickingIn my work with APATT, I am constantly in touch with Autism Parents. I usually contact them to find out how best APATT can help their particular situation or they contact us and seek advice about a wide range of challenges with their children and/or families. It feels good to talk to other Autism Parents because we are all going through similar challenges and this journey can become quite lonely at times.

Most of the time, parents just need to have someone they can talk to and share their hearts and relieve stress even if temporary. Talking about our challenges with someone else can be very therapeutic.

One recurring issue that I have noticed for a while now (It is more prevalent than people think) is when two parents do not agree with the Autism diagnosis given to their child. In my communication with other parents, the father is usually the parent who does not agree with the diagnosis.

I have spoken to quite a few mothers who have expressed the fact that their husbands are not supportive. Even though their children have been diagnosed as being on the Autism Spectrum (Some of them non-verbal), the fathers refuse to accept the diagnosis and do not agree with getting their child the treatment/therapy that they need. Nevertheless, these mothers take their children to therapy but they do it without their spouses knowing which means they have to lie in order to get their child to attend therapy sessions.

Now, this isn’t about bashing fathers because it has nothing to do with gender. As a matter of fact, I know of mothers who refuse to let their relatives know their child has Autism because they are afraid they will see their child or them differently and because there is a stigma attached to having a child who is not neuro-typical. Some consciously and some unconsciously are embarrassed about their children’s condition.

Now, there are a number of reasons why a parent refuses to accept the diagnosis or keeps the diagnosis secret:

CULTURALLY-BASED

We live in a country where having children with special needs is still considered taboo particularly within the older population. If a parent has a child with a disability, the parent believes it reflects badly on them therefore, they refuse to admit their son/daughter has Autism or any other condition for that matter. They are convinced the child will eventually “catch up” and that doctors are either wrong or exaggerating.

WHAT OTHER PEOPLE THINK

Out of fear some parents do not want to ‘tarnish’ their social status by admitting they have a child on the Autism Spectrum. They are concerned they will be looked down upon; judged, they will lose respect/status and will become the recipient of gossip and/or harsh comments.

MACHISMO

In the case of some fathers, they refuse to believe they have conceived a child with special needs because in their minds this means that something is wrong with their ability to procreate, making them feel “less of a man” and finding a reason not to accept the child’s diagnosis.

The major issue with these three points is that as a parent continues spending (Wasting?) time making up reasons why their child does not have Autism, the child in question is being completely forgotten and neglected. As the parent continues worrying about what people will say or how they feel about themselves the child does not seem to be the priority anymore and his/her needs are not being met, therefore crucial intervention is lost through needless delay.

Most of the time, when I talk to parents they ask my advice as to what can they do to convince their spouses that their children do need therapy. It is a tough call because if a parent does not listen to their own wife/husband or even a medical doctor, will he/she listen to anyone else?

Autism is a family affair. It affects everyone in a household. No mother and no father should have to take their child to therapy secretly because their partners refuse to get the child treatment. It is awful to think that so many have to do this. We are talking about a child’s life here and the kind of treatment that could help them live an independent life one day or simply help them cope with their everyday challenges.

I know usually there is more than meet the eye and some of these parents have personal stories, but if the only reason for this denial is self-pride then parents need to take a deep breath, sit down quietly and allow some introspection to take place. Honestly, there is no room for selfishness while taking care of any child, let alone a child with special needs.

Everyone goes through the acceptance process differently. Some accept it quickly but some take longer which is completely understandable. The problem escalates when time passes (Years) and the parent still refuses to admit something is not right. Even while witnessing their growing son/daughter not speaking a single word year after year and they still refuse to get the child needed therapy.

Let’s face it, at some point in this whole emotional roller-coaster we have to put on the big boy/girl’s boots and do what needs to be done for the benefit of our child. There is no room for “me” and what people will think of “me” and what my relatives will say about “me” and there is no way on earth that *I* (Of all people) can have a child with Autism.

There is a little one who depends on you 100%, a human being that needs to get the kind of help right now in order to have a chance in life. I really don’t feel pity for any adult who refuses to give treatment (If they are able) to their own child because of pride. Sounds harsh? Perhaps, but in the process of studying what others will say, our own children end up suffering.

Having a child with special needs can bring two parents together or quite the opposite but regardless of whether they are together or not, they share and will always share the fact that they are parents of a child who happens to have Autism. He/she will always need as much love, support and help from BOTH parents in order to make it.

If it has not reached yet, it will reach a point in this Autism journey where you will say: Who cares what others think. This is about my child. I will do whatever it takes to help him/her.And when you reach to that point, automatically and with zero regrets, you let go of anything and anybody who is not going to be helpful/useful in the support system that you have created for your child. And guess what? You will be perfectly okay doing it.

Your son/daughter needs you. True love is about seeing past our own pride and selfishness and doing everything in our power to assist our children to become the best they can be.

Remember, if you expect others to accept your child, you need to accept him/her first.You already lived your life and continue living it to the best of your ability.

Please, I kindly ask you…do not deny your child the same opportunity.

Autism: Longing To Communicate With You

Autism: Longing To Communicate With YouA couple of years ago, I was surfing the internet when I came across a quote from Dr. Temple Grandin (American professor of animal science and Autism spokesperson). She said: “If I can snap my fingers and be non-autistic, I would not. Autism is part of what I am”.

One of my sons and I talk a lot and Autism is one of those topics we have discussed in the past many times so I wanted to know if he felt that way, so without telling him about this quote I asked him back then: “If you could take away the Autism, would you?” His response was an unshakeable: “No, if the Autism goes away then I will no longer be me”. It was almost the exact same sentiments Dr. Grandin shared.

So I heard his reply and then I continued listening. He explained how even though Autism causes certain challenges and he wishes he didn’t have those challenges, he loves the way his mind works, thinks and he does not want to take that away for any reason. He also said that even though being neuro-typical is perhaps easier in order to fit in in this world, he does not want to compromise the way his mind works because he likes the way he analyzes things and see other angles/perspectives.

It is one of those topics that I thought many times during my almost 20 years of limited experiences with Autism. There is no one fit all kind of answer, every person who has Autism thinks and reacts in a different way about the same issue just like two neuro-typicals would react.

There was this ad from Apple highlighting this non-verbal teenager with Autism called Alex who communicates using a computer device. He explained what was like to live before his family was able to realize he could communicate through this manner. He had these rubber animal toys he plays with, little horses, dinosaurs, etc. He explained that before his loved ones realized that he could understand everything and he was able to learn how to communicate through the computer, life was hell. Because no one was aware that he could understand everything around him, he had no choice but to create meaningful relationships with his animals toys.

When I heard this, I broke in tears. We are talking about a teenager forced to create meaningful relationships with inanimate objects. Think about it. And I thought how many children and adults with Autism are going through the exact same experience right here in T&T?

I think few people realize that the greatest challenge faced by those on the spectrum comes from the lack of resources that can help improve their lives so children like Alex can actually build meaningful relationships with other people and not forced to do it with rubber dinosaurs.

Just a few days ago, I was making some phone calls and talking to a lot of members from APATT to find out how things are going with their children. I love doing that. Wonderful parents, a lot of them single moms working all day and trying to make ends meet. Most of them have children who are either non-verbal or their speech is very limited. A large number of them are unable to use the toilet on their own.

These are the people I specifically have in mind in my work as an Autism Activist. The ones I think about when I meet heads of government or I go to do interviews and share their plight. I am not afraid to speak up and state what is fair and what is unfair. As someone told me recently: “Injustice anywhere is injustice everywhere”.

When I talk to those in power that have the ability to make a difference/impact in the lives of Autism families, I think of children like Alex in the Apple video creating meaningful relationships with toys… and of single Autism parents working as vendors with their children in-tow because they have no one else to see after their children.

This is the side of Autism families that regular folks do not know about but those who work in organizations like APATT know very well. It is not easy to hear those stories.

It is most likely, that perhaps my own children will not benefit from any of the services that APATT is advocating for. One of them has already turned 18. And even though, it is sad to know that… I would like other parents and families to have the chance to help their children and make their lives easier and more manageable. So life can be more about spending quality time with them than worrying about how they will pay for therapy and schooling. No parent should have to ever worry about those things…

True Activism is about being human it is about justice, and it is about love. It goes beyond yourself, your children or your situation. It is a forcing drive that wants to see meaningful, long-term changes for the benefit of others.This drive gets you to take days off work without being paid to do it so you can talk to X person that might help in making a difference in the lives of other Autism families…

True Activism is about sacrifice when you financially support your organization all on your own, with your meager income so that when you do get a donation it isn’t wasted on organizational structuring or salaries but it can go entirely to help Autism families in need…

I do not want to see any more children like Alex forming relationships with rubber toys…no more. I want children like Alex to have a chance just like everybody else.

Just a CHANCE…

Children And Adults With Autism Have Feelings Too

Children And Adults With Autism Have Feelings Too One thing I’ve learned over the past 18 years is that regardless of where your children are on the spectrum, they are first and foremost individuals with wants, needs and desires.They have a voice that must be heard, they have opinions that need to be expressed in whatever way they are able to do it.

They deserve to be loved; listened to and most of all respected. This respect starts at home with our own families. Their place on the spectrum, whether they are high, low or moderate-functioning or whether or not they are able to speak is irrelevant to the fact that they too deserve to be treated with the same dignity and respect we treat everyone we meet.

Respect for their opinions does not necessarily mean agreeing. It means you acknowledge your child/adult as an individual and their contribution as worthy and valuable. They don’t deserve to be mocked or laughed at because of how they think or how they perceive the world around them.

Sometimes the opinions and choices of children on the spectrum might seem uncommon but sometimes letting them make those choices on their own will help them towards becoming independent one day. Every individual deserves a safe environment where they can say “no” with complete freedom and not be afraid of ridicule. Often times, parents do all the talking on behalf of their children but take very little time to actually listen to what they have to say. Their thoughts matter, their opinions matter.

This is one of the things that get those on the spectrum very frustrated, particularly adults. Because they feel as though neuro-typicals want to talk/advocate on their behalf and at the same time they are not listening to what they have to say.

I can count very few instances in my life when people would actually approach my middle son and ask him a question instead of asking me about him. My middle son just smiles and stands there while looking at the person, hoping perhaps that they will communicate with him directly but they rarely do…How many children or adults who are on the lower end of the spectrum experience the same thing?

I understand that sometimes people do not know what to do or it is hard for people to relate, but please always approach the person on the spectrum and talk to them like you are talking to any of your friends. They don’t expect or deserve any less but your normal, everyday approach.

When communicating with high-functioning children on the spectrum or adults it is extremely important for neuro-typicals to allow them to express themselves without thinking we have the answer for everything (Because we don’t) or we have to interrupt or correct what they say (To conform). Respect for someone’s opinion as an individual is not only one of the best things we can give to others but in the case of our children, it also helps to boost their self-confidence and allows them to realise that they too have something worthwhile to contribute.

Adults with Autism have opinions they would love to share with others, sometimes they might also have strong views on certain topics just like the rest of us. And you know what? It is perfectly okay. Enough of the robotics where everyone needs to fit this invisible mold society tries so hard to impose in order to be accepted and validated.

When someone gives a chance to someone on the spectrum and they become friends, they are making a genuine friend for life. They never have to worry about having a fake friend who will either lie to them or stab them in the back. Friends on the spectrum will always be honest with you.

People spend years trying to get a child or adult on the spectrum to “change” the way they think like if there is some sort of anomaly that needs to be fixed (Like a car) in order to get them to think like the majority of people. When in fact, they were born to be extraordinary. Even though it is true that our children are living in a neuro-typical world, they do not have to change who they are in essence.

Children and adults with Autism have feelings too. Those feelings are manifested in many ways. Those on the higher-end of the spectrum do not always “have it good” just because they have the ability to speak and function with less assistance. They too worry, they too want to make friends and be accepted by their peers. They too want to be included in birthday parties, outings and celebrations. Many times, they are also victims of bullying or unethical people who take full advantage of the kindness of their heart and their need for friends…

Those on the lower end of the Autism spectrum are not statues or dolls that we feed, clothe, bathe and move around like if they are furniture. They need nurturing, friendship, love, and acceptance. They too want an opportunity to express their emotions. Someone who would just take the time to sit down with them, look at them in their eyes and speak to them. Someone who would take the time to see pass through the stimming, echolalia and sounds. Someone who would give them a chance at communication so they are not forced to create meaningful relationships with imaginary friends.

But don’t take it wrong. This isn’t a charity project where you feel sorry for the “autistic kid” or adult and you become one of those super heroes that comes to the rescue to make them feel better. No one wants to be anyone’s charity project. Just like us, they just want to be liked and accepted for who they ALREADY are.

Children with Autism should never have to reach a point in their lives where they have to doubt their self-worth. The world is already full of people who attempt to bring others down because they are simply not happy. But our homes can become places where our children can feel the comfort and peace in love and kindness.

A place where they know a caring parent will have their back no matter what happens, a place of protection from an often confusing world.

A place where the word “autistic” isn’t a replacement for their first name. A place where their voices are heard and respected.Their opinions valued and supported.

A place where they know they are loved and accepted just the way they are.

Even though I have many years of experience with Autism, I will never know what is truly like. But what I do know is this…as a parent; it is extremely hard to fix a broken heart. It is hard to witness the unkindness of those who simply don’t care how their words and behavior impact the most vulnerable, it is hard to witness your child trying and trying and never be considered “good enough” to become someone’s friend… And even harder, try to convince your child that there is ABSOLUTELY nothing wrong with him/her…

Be that somebody who makes everybody you meet feel like somebody. A kind gesture can reach a wound that only love and compassion can heal.

Autism Should Not Be A Profitable Theme

Autism Should Not Be A Profitable Theme

When you see an ad in the form of a social media post, newspaper clipping or other form of publication wherein they are asking for “Support” or for the public to “Give” or for “Donations” ask yourself who is really benefiting.

I would like people to take a more proactive approach about who they ‘support’ during Autism Awareness Month or in other words be more aware rather than just read “Awareness”. This is not the first time that I am seeing businesses promoting cups, items and products with the slogan of ‘Supporting Autism’ but they never publicly state how Autism families or individuals are exactly benefiting from the sales of these items. It is not the first year that I have seen people online asking for the public to “Join”, “Support” and in the end buy in and yet not detail how contributing to their brand, product or name helps families directly.

We all hope that contributing to these advertised ventures actually benefit those citizens on the spectrum by having their needs addressed instead of just making a one time event, ‘fun day’ or funding a private institution. The reality is we do not know where the money goes even though it should be clearly shown where thousands of dollars go each year using “Autism”. Here is an example, if someone says they need $1,000 to ‘help’ a child on the spectrum and yet pay themselves that $1,000 and request another $1,000 from the parents under the name “Helping”, is that truly addressing what that child needs or just making it more difficult for financially strained Autism families?

If businesses are going to profit from Autism during Autism Awareness month they have to specify who is going to benefit from their sales and/or donations. Is the money going to someone’s private pocket? Is an organisation benefiting and if so, who? Are Autism families benefiting privately and how exactly?

Autism is not a brand or a theme like Easter or Christmas and if businesses are going to profit from Autism Awareness Month, they should detail how exactly these funds are going to be utilize to help Autism families.

If a business raises for example $100,000 and they state it is benefiting 10 children with Autism… this means 10 children supposedly benefit from $10,000 each. Why not make it benefit 50 children or 100 children instead and reach out a greater number? How are these children selected and how much is given to each child? What about the rest of children?

A common answer is that they say part of their sales will go towards Autism families or organisations. What exact percentage of their sales will go towards them and who are these individuals? These questions are valid and vital for transparency.

I know a lot of you wish to support Autism families. Please ask the relevant questions, and specifically please do not support any venture that does not benefit Autism families directly or businesses who do not specifically answer these very important questions.

Autism Awareness Month should never be an opportunity to profit from the condition of hundreds of individuals using Autism as a theme. It is not a theme or a trendy event. If sales are going to be acquired under the umbrella of Autism Awareness, businesses should specify exactly who is going to benefit from such sales.

It is the right thing to do. Please everyone, be aware.