Monday, April 16, 2012

Instruction Manual

Don't you wish kids came with an instruction manual?  A reasonable instruction manual, that had clear, colorful pictures, and was easy to follow.  Step by step instructions, a "trouble-shooter" guide, maybe an index and glossary.  Don't you wish there was a 24 hour help line to call?  I mean, besides calling your mother or the doctor a million times.  I really wish there was an Autism Help Line.  I wish there was a friendly mother-type who was manning the phones, that could answer any question that I might have, and solve any little problem that might come up.  Answer the questions without making me feel stupid, or selfish, or uncaring.  I wish I had that 10 years ago when Katie was first diagnosed with Autism.  Instead, I felt alone, scared, and utterly helpless.  I felt like the weight of the Autism world would crush me, and that I would fail my daughter.

I am not sure how this happens, but over the years I have had many people referred to me for help.  Newly diagnosed autistic children, their parents somehow get my number and call me.  I have spent many hours talking to moms and dads, most of which I had never met (and still never have met).  I have counselled them, given them advice, listened to their stories, and tried my best to assure them that they will make it through.  I do not have a special degree in autism, I have not been formally trained, but since I had been through it myself, since I am living it day to day, caring relatives and friends have sent them to me.  I obviously don't give them any sort of medical advice, I give them the advice that I wish someone had given to me.  I give them the step by step instruction manual that I have never written down, but has served me well.

Step 1:  If you suspect that there is something wrong with your child, sit down with your partner and talk about it.  Talk about your concerns and what specifically is worrying you as soon as you notice it.  Yes, some people overreact, but wouldn't you rather know for sure if something is wrong, than let time go by just because you don't want to "cause a stir" or be labelled as a "crazy parent".  Talk about your concerns with your partner, and see what they have to say.  See if they have noticed things, and write all of this down.  That way, if you have to approach a professional later, you will remember exactly what you need to say.  So many times people have gotten nervous during the doctors visits, and forget everything that was bothering them.  Write it down, talk about it, don't be afraid to ask others who are close to your child for their opinion.  But prepare yourself to hear something that you might not be comfortable with.  If you ask, keep an open mind to what they have to say, and write down their concerns as well.  All this information will help the doctor later on.  There is not a definitive test for autism, most of the diagnosis will be based on observations, so if you have written down what you have seen at home, it will really help in the process later.

Step 2: Start the conversation with your family doctor or pediatrician.  Do this sooner, rather than later.  If your child does have Autism of any type, early intervention will be the best possible help for them.  You do not want to waste a lot of time being embarrassed to ask questions.  If you do not agree with what the doctor says, feel free to go for a second opinion.  During this time, do some research into what autism is.  There are many websites online that have specific descriptions, questionnaires, and resources available.  Look into as much as you can.  If your child does not get an autism diagnosis at this time, keep watching them and observing what made you uncomfortable before, and feel free to keep consulting your doctor on their progress.  Not all children suspected of autism actually have it.  Some have other issues, some are just different children.  Be ok with that.  But keep on top of things. 

Step 3:  If your child is diagnosed with autism, find out what resources are available to you in your area.  If your child is still young, sometimes there are early intervention programs through the school district.  Call your district and find out.  Sometimes districts consolidate their resources and you might have to go to another city.  If your child is school age, you will want to consult with your district about creating an Individual Education Plan for them, which is a meeting that you will go to with your child's teacher, and other staff that will assist your child with their education needs.  These meetings will be held annually, to assess if your child's needs are being met.  These IEP's are basically a legal contract between you and the school system, to say what resources will be provided to your child. 

Step 4:  Keep an open mind to your child's other needs as well, including their mental health needs.  Some children will need to see a specialist in one area or another, possibly a social worker, or psychologist, sometimes a nutritionist or speech therapist.  Hopefully either your family doctor or the school district can help you determine where else you might need to go for assistance.  At some point, some autistic children also are benefited by certain medications for anxiety, depression, compulsive behaviors, and other issues.  As a parent, you might have to make some tough decisions on whether or not you think medication is right for your child.  And keep in mind, their needs will change as they get older.  They might start developing different habits, behaviors, and obsessions as they grow.  What works for a 4 year old may not work for them when they are 14, or 24. 

Step 5: Bring your child into the world as much as you can.  This sounds easier said than done, and it is easier for some than others.  But they belong in the world as much as anyone else, and autism awareness is out there.  Don't be afraid to say to strangers that are staring , "She is having a bad day today, she has autism", while your child is having a tantrum.  I have known crabby old ladies, who have been glaring at me in church, to bless me and my child when I turn to them and tell them she is autistic.  Do you have to do this?  No, but it makes it a lot easier when people are kinder to you. And people are kinder when they are aware, and the only way you can make them aware is by telling them.  Bring your child to the store.  Bring your child to the movies.  Bring your child out to dinner.  Bring them on vacation.  But also find you child activities that are autism friendly.  Find a local organization that has sports or clubs for them.  Then they can laugh and play and grow and be themselves with others like them.

Step 6:  Don't forget about yourself, your partner, or your other children.  Take time for you, carve out some time that is just yours.  Do not wrap your life around this child so completely that you loose yourself, and resent them in turn.  Do the same for your partner.  Take care of each other.  Spend alone time together.  So many people end up divorced over things like this.  Also, make sure that you find some one-on-one time for your other children.  Make sure that they know that they are important, and special.  Let them know that you understand how hard it is to have an autistic sibling, but make sure they also know how special that autistic sibling is.  Teach them all to love each other and help each other and accept each other, but also recognize when they need a break. 

Step 7: Hold your autistic child to the same rules as everyone else.  Bedtime is bedtime.  No means no.  Time outs are time outs.  Chores need to be done.  Manners need to be followed.  If you follow this step from the beginning, it will really benefit everyone later on.  When they get to school, they will understand rules.  When you hold them to the same standards, your other children will be able to see that everyone is loved equally.  Of course your autistic child will need different standards, different guidelines, different consequences.  But if you start from day 1 raising them just as you are your other children, but altering for their understanding and needs, it will be so much easier in the end.  I am not an expert on Autism, I just know what I know from living it day to day.  What works for me and Katie may not work for you.  But take comfort in the fact that you are not alone.  There are many of us living the Adventures in Autism together.

1 comment:

  1. Mary, Thank you for sharing your story. Even though neither of my children or any of their children have Autism, t still interests me. Your sharing is educational, and assists me in helping with one of my girlfriends (who has since passed away) son, who was raised as a nephew...His daughter is Autistic. I think because of what you and Kevin go through with Katie, and how much she has changed over the past few years. I know Curtis isn't in a endless battle.... Thank you again so much...