6 Easy Steps, Preparing for Assessment

It's Autism awareness month and as luck would have it our youngest is going in for an autism assessment, so I thought I would share how we prepare for an assessment.  Our youngest isn't our first to be assessed, as we have 3 diagnosed with autism, however it is still very stressful.  We want an explanation for his unique behaviours and challenges, we hope the team assessing see's the challenges our child has and can recommend supports that will be beneficial.  Also our son will be starting school in September and currently he does not have an explanation for his significant delays and behaviour challenges which means he won't qualify for any school based support, something he will definately require.  He currently receives "early intervention" support that will continue until June when any school supports would take over, so his medical team is working hard to figure out what is causing his challenges.

6 EASY STEPS

PREPARING FOR ASSESSMENT

Research autism symptoms

Read the DSM-V criteria and get an understanding of what the psychologist will be basing a diagnosis off of.  I also find it helpful to read articles, blogs and watch youtube videos about autism so I can get a picture of what autism in daily life looks like for others.  Yes, we have 3 examples in our home but autism can present differently for each individual.  By doing this research it triggers memories of the unique behaviours my child presents so I make notes for myself.

Document, Document, Document

Once I have myself refreshed on what the psychologist will be looking at I prepare myself a list of anecdotes from my childs life relating to the criterea.   During the assessment I will be asked about my child and sometimes when put on the spot I "freeze" or "forget" so I want all the information handy. I also like to take pictures and video's of my child's unique behaviours as I find it explains situtations much better than I can do with words alone.  If you are taking pictures and videos speak to the psychologist and ask when they would like them.  We recently submitted a CD with multiple examples of our sons behaviours prior to our appointment, so the psychologist has time to review them and then can ask us any questions during the assessment. I also write notes regarding each picture to describe what was happening, how often this behaviour is present and any triggers I think may have caused it.

Gather reports and assessments

Gather any reports or assessments that your child has done in the past.  Any and all information that you have will help the assessor get a full picture of your child and help obtain an accurate diagnosis.  Reports from doctors, therapists and even notes from preschool/daycare or activities help, it's better to have to much information than to be kicking yourself saying "oh I forgot to mention".  I have detailed more on building documentation in this blog post.

Assessment day

On the day of the assessment bring a support person or two if you need them.  I find it helpful to bring a support person for the child being assessed, a person that will take the child out to play when the psychologist needs to speak with me.  I find it difficult to focus on what needs to be said when my child is stressed out and just wanting to leave.  Maybe you also need someone to prompt you, if so bring someone.  Bring snacks, beverages and toys to make your child and yourself feel comfortable.

Bring your questions

Do you have questions for the psychologist?  Write them down, bring them with you, this is your time to speak with the psychologist so make sure you ask your questions.

Dealing with results

Whether your child gets an anticipated diagnosis or not it is hard.  Give yourself time to cope, adjust and possibly greive.  Try to remember that the diagnosis does not define the person, that this is the same child that you loved and adored before the assessment and the diagnosis hasn't changed that.


How did you prepare yourself and your child for their assessments?  What do you wish you knew before the assessment or could have done differently?

Finding support in the community

7 of the kids and I recently had the opportunity to attend the movie "Kung Fu Panda 3" hosted by the Canucks Autism Network.  The Canucks Autism Network supports individuals and families effected by autism by providing sports, recreational, arts and social programs for individuals and families living with autism in communities throughout British Columbia.  They also promote awareness and training regarding autism and have a library of resources available to support families.

The movie was the first event that we have attended by this network and I was extremely impressed by them.  There was no cost involved for anyone wishing to attend this event, including free popcorn and a drink, but even more importantly they had autism staff willing and available to help with any needs.  The movie was played at a quieter volume, they kept a low level of lighting on during the entire show and they did not play any previews which limited the time patrons needed to sit and watch the movie.  The autism network also includes all family members including siblings that do not have a diagnosis which is a tremendous benefit to us.  In our family 3 children are diagnosed with autism however many others have challenges that benefit from extra support and this is an enviroment where they would not stand out.   Other activities hosted by the autism network do have minimal costs but they appear very reasonable and family friendly.  We are hoping to get more involved with them in the near future.

Reducing frustration, 1 ball at a time

When we adopted our son 2 1/2 years ago, at 2 years of age, he struggled with almost everthing and many of our friends and family thought of him as difficlut to love.  With severe sensory issues, autism, epilepsy and a chromosome deletion everything in his life triggered screaming, raging and head banging.  Our sons abilities were extremely delayed, he wasn't walking or standing, could only sit when propped up, he could not speak and his feeding was similar to a 6 month old.  Existing took major amounts of energy and he slept the majority of the days and nights only waking for nourishment and a limited amount of interaction before the screaming, raging and head banging returned and the need for more sleep.

This little boy only had one thing that made him the slightest bit happy, so we knew that we had to work with this interest if we ever hoped to have a happy boy.  The slightest bit happy meant he wasn't screaming, raging or banging his head for a couple minutes while we tried to interact with him.  We needed to meet our son where he was at, and progress from there.  He was able to hold a ball and enjoyed watching us play with a ball.  We would have mutliple very short sessions throughout the day playing with a ball building slowly and steadily on skills and language.

Speech increased as we described everything, starting with single words, and increasing the number of words.  Ball, roll, throw, roll the ball, etc.  We used "picture cards" and "sign language" while verbally speaking hoping to make a connection.

Strength and coordination increased as he went from holding a ball, to moving to reach for the ball, to rolling, throwing, catching and kicking the ball.

We varied the balls, shapes, sizes, weights, textures and colors which built on the strength, coordination and topics for speech.  We encouraged him to play with siblings and pets,  with the balls.  When we attended therapies we had already started developing a pathway for the therapists to reach our son which they were able to work from.

From starting with a simple ball 2 1/2 years ago he is now able to play with many other toys and work through his therapy sessions working on a variety of skills.  He is still substantially delayed but he is making huge progress from the little boy that spent the day screaming, raging and head banging.
We will still resort back to that ball whenever we are working on a particularly difficult skill.  Most recenty we took 2 soccer balls to the playground hoping to work on social skills with peers.  Today there were 3 other young children and when they saw us coming with 2 balls they came over (with their adults) wanting to play.  All the adults encouraged the children to take turns and they all enjoyed playing together.  Having 2 balls made it easier so each child had more turns so nobody lost interest too quickly and if our son decided not to have anything to do with sharing at least the other children could use the 2nd ball.

All the hard work from therapists and family, that started with a simple ball, is paying off.  People regularly comment on what a happy little boy he is and the head banging, raging and screaming has dramatically decreased.   Finding that interest to build on took time but was well worth the effort and throughout his life I believe we will be looking for more interests to build on as we develop more skills.

Superpower for good or evil....what's your power?

If you could have a super power what would it be?  Would you choose super strength, maybe you would choose the ability to fly or what about telepathy?

My daughter has a very unique super power, whenever she sits in her wheelchair she becomes invisible.  Now to anyone who knows her she is not invisible but to strangers she is.  We will stop at a store or mall and if seated in her wheelchair people look away, won't make eye contact, or look at her as if they are looking through her and generally avoid acknowledging she exists.  When we are at a busy attraction, were either her Dad or I are pushing her in the wheelchair, people will walk into her and her chair, spill things on her or bump her with things they are carrying.  The majority of people do not acknowledge or apologize for doing this to her.

So far she hasn't been able too use her superpower for good or evil and with her autism she is probably more comfortable being invisible.  As her Mother I would prefer she doesn't practice her invisibility.  Quite often I will place my daughter in a shopping cart when we are out and the difference is tremendous.  People will talk with her, comment on how cute she is and generally engage her.  When in a shopping cart people do not walk into her or spill things on her.

Next time you are out and you see a child sitting in a wheelchair remember they are a child first.  Look them in the eye, smile and say hello.  This actually goes for anyone sitting in a wheelchair or using a walker because my guess is they all have the same superpower my daughter has.

Black and White thinking

Today our adult daughters felt it was time to continue the tradition of taking their younger teenage sister out to buy her first pair of "thong" underwear.  This "tradition" started about 6 years ago with our first daughter feeling her sisters underwear was not "cool enough".  This has now become a tradition with the girls of the family, when you are old enough your sisters take you to buy you new "cool" underwear.

After a day in town the girls come home after finding the perfect pair.  This may have been fine if the said teenager was not diagnosed with FASD.  Upon arriving home she feels it necessary to scare her older brothers by showing them her new "thong" and the best way for a modest girl to do this was to put the "thong" on over top of her jeans.  You would think that having seen so many "thongs" hanging out of many girls pants you would know how to wear one.  This was not the case and the "thong" is on backwards over the jeans, it must go this way because "the tag always goes in the back".  After an explanation of how to wear the underwear and a description of why the tag was put on the front (no room to sew a tag on that small piece of elastic at the back) she has it over top of her jeans in the correct direction and the scaring of her brothers ensues.

The next morning comes and it is time to wear the underwear for the first time.....just cannot get it through her head that the tag is in the front.....when you get dressed the tag always goes in the back.  It is time to remove the tag on the underwear as it should not be this complicated to put on your underwear on.

A lot of people struggle with having "black and white thinking"  meaning it is either black or white, right or wrong, the truth or a lie and there is no room for grey or a little white lie.  When you think of our society we have a lot of "grey areas" which makes it difficult for people with these challenges - people struggling with autism, FASD, etc.  For these individuals it's not always as easy as cutting out the tag in a pair of underwear to change the thinking.

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