Autism is a family matter

Autism is a family matter. It impacts the parents, siblings, grandparents, cousins and pets(yes pets!). Over the years of providing therapy in people's homes, I have been given the opportunity to observe the family dynamics, impacts and stress that Autism has on the entire family.

 Parents of newly diagnosed children, that contact me for treatment are usually at their witts end. They can't cope with their child anymore. They can't handle the maladaptive behaviours. They can't handle the lack of control, lack of a happy family, lack of sleep. Often times these families are in distress and stress mode, and are just doing the bare minimum just to survive. Anxiety, depression, OCD behaviours, sleep disorders can all develop or increase for parents/siblings when families are left to handle this situation.

During family meetings and parent coaching sessions, I am frequently asked "what impact will this have on his sister"? "what impact will this have on my marriage?" How much will this cost?" "How long will he/she need therapy for?" " When will they be better?" Oh how I wish I could answer all of these questions. I wish I had a magic wand or some sort of magic spell to make it go away. I am honest. I tell the families:
* this will impact his sister. You will need to make sure that she gets adequate time, love and attention too.
*It will have a huge impact on your marriage. You will feel guilt, and argue and be tired and frustrated...and you will likely take it out on each other. Make sure you find special time to spend alone and don't talk about problems. Just enjoy each other.
*This will cost you a lot. Full time therapy usually costs around $50 000/year
*Your son or daughter will likely need intensive therapy for years. We won't really know until we get started. We take small baby steps...so it takes hours of work.
 *I can't tell you when he will be better...but starting therapy now is your best option!

Now you are reading this and it sounds horrible and scary. The truth is that sometimes it can be. Sometimes and most often though...these first steps are the hardest. Once the family starts down this road...things start to change. People learn and grow. Children adapt. Parents get help and reach out and rely on others. Children with ASD start to learn...and change...and become more engaged with and in their family.

Autism is a family matter. It should be! Everyone needs to be involved.

Let go

Being a parent is hard. Being a therapist is hard. Letting go is part of the process for both roles.

As a parent our main goal is to teach our children to be independent. Our main goal as a therapist...is to do the same. For both roles...we are trying to encourage positive self esteem and confidence. We are teaching our children to make good choices and to be able to give back to society. We are teaching our children to love and to be happy.

Parents of children diagnosed with Autism can have a very challenging time "letting go". Letting go: takes trust and faith that the child is going to be OK without them. This is difficult, given all of the emotional challenges and difficulties that many of these families face. The mom is often, filled with guilt and sadness. Knowing in her head that she needs to let go...but in her heart not wanting to. Sometimes that can be for selfish reasons....but mostly it is because, letting go feels like you are letting a part of you go. It hurts.

I don't think it matters if your child is typical developing or developmentally delayed. This is hard! No one said that bringing a brand new helpless baby into this world was easy. They definitely didn't inform us that...letting go, little by little is painful, scary, sad and joyful, all at the same time.

Eventually, we all have to let go. The best thing that we can do as parents and therapists is to provide our children with the necessary skills to be as independent and strong as possible.

We need to love our children unconditionally everyday...for everything! We also need to have faith... and trust that our children are going to be OK!!

Sensory Assessment

Sensory integration with children diagnosed with Autism is a critical component for their treatment. I am often surprised at how often this is over looked when people work with these special children. Here is a list of the areas that these children can have difficulties with:

Proprioceptive
Vestibular
Tactile
Oral Motor
Visual
Auditory
Multi sensory
Modulation to endurance /tone
Modulation related to body position and movement
Modulation of movement affecting activity level
Modulation of Sensory Input affecting emotional responses
Modulation of visual input affecting emotional responses and activity levels
Behaviour and Emotional Responses
Behaviour outcomes of sensory processing
Threshold response

Now you can see just how difficult it can be for most of these children. Sometimes all of these systems can play havoc all at once. No wonder...they have stimulation problems! If all of these systems are not "working" properly, then these children can have a complete disconnect from brain to body.

This is a critical component when working with these children. Completing a sensory profile for your child, can be a critical tool for your treatment plan and team. These issues will often require the assistance of an experienced Occupational Therapist, physical therapist, and experienced therapists to work with your child. Sensory diets and exercises should be included into a well balanced therapy program.

We also need to be careful to not overload this delicate balance of sensory systems. There are some negative responses that can occur if this system is challenged too much or not handled with care.

Second Chances

So a second chance was given to a little boy that I work with today. This is a rare case, and many provisions have been made to help this little boy to learn. These children all learn differently, and so my faith has been restored, that the system might actually acknowledge that.

This industry can be very frustrating and heart breaking, for that very reason. Our team went in to advocate for this child, to give him a voice. To fight for his right to a fair and real teaching environment that is designed exclusively for him. We are going to get the chance and the opportunity to try. That is all we were asking. Please...just let us try!

Child Teachers

Today I was reminded how natural it is for children to be teachers. As I observed my clients in social situations with other children, I was well aware that a natural awareness was taking place. Almost an animal instinct.

Imitation skills...took on a mind of their own. One child started to line up cars...the other child joined in and started to line up cars too. A child started jumping due to over stimulation, and another child joined in and started jumping...just because it was fun! The most profound moment for me today, was when a 2 year old "typical developing" child acting like a dog, barking and growling, was able to excite a low functioning child with Autism. He was able to entice eye contact, smile, engagement, imitation, sharing, joint attention, and affect. For the first time, my client was enjoying interactions with another child. This was such a beautiful natural moment. He was learning so much at this moment...but he didn't know it!

What was going on? These children, that most often have such deficiencies and challenges in social awareness, joint attention, imitation and communicating...were doing just that! They were engaging. They were communicating. They were sharing an awareness in time and space. This was not adult-teacher directed. There was no pressure to perform. There was no right or wrong in this moment. Just children, being children despite all of their individual challenges.

We are so eager to want a quick fix for our children. We want to see progress right away. Sometimes, and almost always, these things take time. They always take patience and lots of love. They also require children and lots of play!

I love my job of working with children diagnosed with Autism. I am thankful everyday that I am learning and becoming better. Better at being human. Better at being patient. Better as a teacher and therapist. Better as a mom.

Power Struggles

Power struggles! I am sure that every parent out there has experienced pure joy in dealing with their little angles when a control issue arises! We all experience these challenges with our children, typical developing or not.

First of all, human beings like to feel like they are in control of their own life. This starts when a baby reaches the age of 2. This is why it is termed the "terrible two's" because these little people are beginning to challenge all of the authority around them. They are trying to control their little world...the best way that they now how. Often times this results in melt downs, temper tantrums, screaming, kicking, biting or all of the above. We also are quick to recognize that when a baby is 2 years old, they have limited verbal communication skills, if any at all.

Now, for parents that have children diagnosed with ASD, this might remind you of daily occurrences with your child! This is termed as behaviour in the Autism world and would be documented if the child was in therapy or attending school. In therapy terms, it would be tracked using these: Antecedent, Behaviour and Consequence. These "terms" exist every time that behaviour exists, whether a typical developing or developmentally delayed child.

Here is a break down:
Antecedent: this is the event, activity or environment that took place prior to the behaviour
Behaviour: this is the meltdown, crying, screaming, kicking etc,
Consequence: this is the result that takes place after the behaviour or sometimes during to try and reduce it

It is extremely important that this information is known, to be able to understand how to handle, and teach a child to respond in a more favorable way. Many of these "behaviours" are caused because the child can't communicate their needs appropriately. They also sometimes behave this way because they can! If there is no consequence for inappropriate behaviour then the child will repeat or sometimes even escalate the behaviour. Sometimes this is just attention seeking behaviour and will be encouraged if treated incorrectly.

This all sounds very technical and challenging. Challenging it is and can be...for all children (and parents). They key is consistency and follow through. If you say NO...mean it and don't give in, no matter what! That means all the crying, screaming, biting in the world isn't going to change your mind. This is how you build trust and consistency with children. It means that you love them. You are giving them the tools that they need and deserve to survive.

Power struggles will happen...it is how YOU as a parent/teacher handle them. The child will learn by your behaviour and what you do.

 We need to change our behaviour first, before we can expect a child to change theirs.

I hope that helps!

Weather and its impact

So today it was grey, cool and rainy. I could feel that my mood matched the weather almost perfectly. Anyone that suffers with arthritis will also complain that their joints hurt on these types of days. Other people feel blue. I always wonder what impact the weather will have on my clients?

With some of my clients, we track the weather. We take data on humidity, sun vs grey or overcast days, rainy and cold days, snow and wind. The barometric pressure and a full moon seems to often have an impact too. For some children these changes can impact sleep patterns and eating. It can also have a large impact on mood and behaviour. The fact that many of these children have difficulty with verbal communication, leaves a challenging puzzle to figure out! Tracking these weather patterns can give you important information about your child.

I think that it is important to not overlook some of these sensory factors that might have an impact on these over sensitized children. Be kind and thoughtful and remember that they are entitled to have feelings and have "off days" too. The trick is to balance the fact that life still goes on and we have to continue with tasks and accomplish jobs and duties.

Just being aware that this might be a symptom of something larger, is knowledge that will help you to help your child function to the best of their ability.

Transitions

September is the month for transitions. Transition from long lazy days in the summer to short busy days in the fall. Transition from staying up late and sleeping in, to going to bed by 8pm and waking up at 7am. Transitions from eating when you are hungry to eating because it is first nutrition break at school. Transition to the first day of school from staying at home(or having IBI therapy). These can be very stressful times for all children.

Children diagnosed with Autism don't often tolerate transitions easily. These suggestions are to meant to assist you with helping your child during these times.


Routine: it is so important to establish a healthy routine for all children. This also helps to encourage confidence and independence. Bed time should be at the same time each night. It is important that the child experiences being put to bed by mom and or dad or other family members, so that they can generalize these skills across all people. You don't want to fall into a trap that your child will only go to bed when "mommy does it"! Also try to encourage reading different stories and or songs...so that the child won't develop obsessions with these items.

Social Stories: these can be a wonderful tool to use to get a child involved in the process of upcomming transitions. Holidays, birth of a new sibling, going to school etc. Accumulate pictures for the upcoming event and design a simple story from the start to finish. Children diagnosed with ASD are frequently visual learners and so these pictures along with verbal stories will help them to "see" and "hear" what is going to happen.
On the odd occasion, social stories can increase stress and anxiety in these children. If your child develops severe anxiety or stress talking about the story...then stop. Try it again at another time. We don't want to encourage negative feelings or experiences around this event.

Going to school: starting JK or attending school after attending IBI therapy can be a stressful event. Developing a strong relationship with your childs principal, school teacher and Special Education Resource Teacher are critical for your child to be succesful at school. Try to arrange for your child to visit the school, his/her teacher and tour the school a couple of times before the first day. Ask to allow your child to play outside(with you)so that they can see and learn about the environment and boundaries present. If your child is a flight risk, make sure you understand how this will be prevented and what steps will take place if the child does bolt.If the child rides the bus to school, ask if there is an opportunity for the child to have a "practice ride". Practice using the washrooms and toilets, as these can be very scary for children with Autism.

Transitions are a wonderful opportunity to learn, for your child and for you. Do some homework and establish some good routines and social stories for your child. Expect to see some tantrums,meltdowns (for you and them) and perhaps a little regression in some taught skills. These will deminish with time though as your child learns the expectations and builds self confidence with all that is being learned.