Saturday, 26 October 2013

Follow Your Instincts

There is all sorts of parenting advice out there but the best advice is to follow your instincts and do what you believe is right for your child.  There will always be fads.  This is especially true with autistic children.

I guess we practiced our own version of attachment parenting. 
I nursed Micah on demand and for a very long time each session.  It could be as often as every 15 minutes.  It was torture and I was very frustrated and irritable but I wouldn’t have done it any other way.  I believe it has helped our current relationship because I met her needs and because of having so much time together.
At the hospital, after she was born, she nursed constantly and would be latched on for up to an hour at a time.  The nurses told me Micah was using me as a soother and not just for food.  She wasn’t even a day old and they basically told me she was already manipulating me!  I knew they were wrong.  She obviously needed to do it for some reason, even if we didn’t know what it was.

Our Public Health Nurse (PHN)/Lactation Consultant was able to come to the house a few days later and even though the nurses at the NICU had said Micah was latched on properly, she wasn’t.  She was only getting a little bit of milk at a time.  It was good she was constantly nursing so she was able to get the food she needed- good survival instinct!  If I had only fed her on a schedule then she would have ended up back in the hospital from dehydration and weight lose.

She also needed to nurse so much to meet her sensory needs and her stomach was probably sore because we didn’t know for quite a while that she has celiac disease and other food intolerances.  So even though the latch was fixed she still nursed a lot.  I didn’t sleep much especially at first.
Our PHN was very supportive and she recommended nursing on demand and co-sleeping.  Co-sleeping made it so I could get some sleep.  I co-slept and then slept on a separate bed in the same room as Micah until she was six and we moved to a new house.  At that point, we transitioned her to being on her own in her room but with her service dog so she wasn’t completely alone. 

The big thing when Micah was born, was to Ferberize your baby so it would sleep through the night.  There was no way that was happening in our house and I didn’t have to sleep with her forever as some people would have you believe.  She did it when she was ready.
Everything we did was what Micah needed at the time. Not just something she wanted.

Our PHN also recommended baby led weaning which was something we believed would be good for Micah.  She mostly nursed for soothing as she got older and I’m sure she had a sore stomach too.  Some people believe that if you let the child nurse until they are ready to stop, they will be teenagers and still nursing!  We did have an interruption, when she was almost two, so that I could have my thyroid treated with radioactive iodine but she went right back to nursing as soon as she was allowed.  That was the first time she was depressed.  It is awful that a two year old can suffer from depression.  She had to learn to drink out of a cup because she would never take a bottle and rarely would take a soother.
She weaned herself soon after starting school at age four.  She had other, more important things to do!

Throughout her younger years, we had various people telling us that Micah was manipulating us and demanding attention.  No, she did what she needed to do in order to get her needs met.  She needed reassurance; needed to feel safe.  The world didn’t feel safe or comfortable.
We didn’t leave Micah with babysitters until she was at least three or four.  She wasn’t comfortable with others.  We had to find the right person who would play what she wanted, at her level.  None of the babysitters were horrible but some only came once because Micah did not like them.  Usually because they either didn’t play with her or didn’t let her direct the play.

All autistic kids are different and Micah did not play at all on her own.  We always had to play with her and she always had to direct the play.  It worked out for me because of my lack of imagination, although it was repetitive- it was a section of movie or tv show acted out with animals.  She didn't play with dolls.
Although, we have been careful to pay attention to Micah’s needs, we have also messed up.  I have yelled at her.  Not good, but no one is perfect.  The constant crying and meltdowns, especially when she was younger caused serious sensory overload in me.  I have my own issues so that makes things worse.

And still, even and especially, after her diagnosis, we get told she is manipulating us.  She is just trying to get her needs met, not making some evil plan to dominate us! 
We have been told that some of her aggression is attention seeking and also manipulative.  No, it is due to anxiety and sensory overload.

We have tried to support Micah the best we can without knowing the exact cause of her aggression and meltdowns.  She is a completely different person in a severe meltdown and doesn't remember what goes on.  It is not done on purpose to hurt people.
Over all I think we have done a good job raising Micah.  She is doing well.  She may have a little too much self-esteem if that is possible!  She likes to remind us that she is awesome!

I think she is doing fine.

Saturday, 5 October 2013

Birthday Party

Birthday parties and autism can be a good and/or bad mix depending on the person and setup.
My autistic daughter has always loved the birthday parties she has had and she usually does well at the ones she attends.

I on the other hand, always wanted parties as a kid but had meltdowns because they weren’t exactly how I planned and people didn’t do things the way I thought they should.  I don’t have many childhood memories and most that I have are bad.  What I do remember about my parties was that they seemed to be a failure.  Hopefully, the people who attended enjoyed them at least!
I like making Micah happy with her birthday parties but it is very stressful for me.  Planning and organizing are hard enough but what is hardest for me is interacting with kids I don’t know well and their parents.

When Micah was younger we invited very few kids to the party and I had someone help me. Depending on what she has wanted to do and whether we could afford it we went out to have the party.  One year, it was at the pool where she had her swimming lessons.  She invited her whole learning centre from school that year so there were about 20 kids from grades 2-4.
That wasn’t too bad because her therapist was there with another boy so she assisted me and there was also a lifeguard.

The other away from home party was at a circus school so there weren’t too many kids invited but it was still stressful making sure everyone could wait their turn etc.  One of the parents stayed to help his daughter. 
When Micah started school, we had to start having her party before school ended in June since her birthday is around the August long weekend and many people are away.

I don’t know how Micah has been able to handle all of the sensory overload and excitement of parties but maybe it is because we are more careful especially when she was younger with putting limits on numbers of children, activities and, time. 
This year’s party was very anxiety provoking for me.  Micah wanted to have a mystery party and play a live version of the Clue game.  It seemed like a great idea. She wanted to invite her class- 5 kids, some old friends, and some new friends from various places.  A total of thirteen kids were invited and all but one came.  There was a large range of ages (9-16) and abilities.  I was worried about whether everyone would be able to participate in the game but we figured out groups so enemies were separated and those who needed more support were with those who didn’t.

I realized the morning of the party that I didn’t have games prepared for while the kids were arriving and waiting for their pizzas (build your own!) to cook.  Not good when most of the kids were autistic and would have sensory overload and anxiety.  We had to come up with something quickly.
I found some games on the internet that we ended up playing at the end of the party. 

I had a friend helping which was good because I struggle with talking to the kids.  She took any kids who wanted to run around and jump on the trampoline out the back while I got pizza fixings ready and cooked the pizzas. 
There were the usual arguments but things went well. 

After pizza, we explained the game and got the kids into groups.  Things went okay but it probably would have been more successful with just the older kids as most of the younger kids didn’t understand the game.
I had thought to put out some sensory toys for if someone needed quiet time but forgot to tell the group and I don’t think most of the kids were used to that being available, especially at a party.  The toys were used but as weapons mainly!  Rody, the bounce horse got a work out bouncing on the little indoor trampoline.   That was fine as that was obviously what that child needed to regulate at that time.

All of the chaos of kids running around, the noise, the mess, and not knowing what to say and what to expect from them caused me to have severe anxiety  but I couldn’t hide and have a meltdown.
I couldn’t stim- can’t let anyone see the strange things I do.  It’s not appropriate, ladylike- any phrase you have been told can fit in here!  What I needed to do was hit my legs, hit my head (not hard enough to do damage- don’t worry), flap, bang my head on the wall (again not to do damage but to make the bad feelings go).  Those are things I needed to do to help bring the anxiety down but I had to hold them in- to be normal so that by the end of the party I just wanted to sleep.

Micah had fun at her party but it was a little too ‘wild’ for her (and me!)with all of the kids, especially her classmates overstimulated.  Next year, we may have two parties- a class party and another with a few other friends.  Things might go a little smoother.
I survived this year and we have a year to figure out the next birthday celebration!