Posts tagged family

Day 179: Christmas is Coming!

I have finished 31 Days of Autism Awareness although, it ended up being more like 26 days.  It was a great challenge to post every day but the end of that month has brought us to the beginning of the Christmas season and I am starting to get the calendar filled up.

Our family ends up spending Christmas with one side of the family on the American Thanksgiving weekend and then with the other side of the family on Christmas Day.

So right now we are only two weeks away from our first Christmas celebration.  It is exciting and I am getting in the spirit but I am refraining from putting on the music and decorating because I know that by the middle of December, I will be sick of it all.  I want to enjoy the whole season so I am going to wait.

I like getting everything done with one side of the family by the end of November.  It makes it a lot less stressful for both celebrations.

We will have a great extended weekend with family that we last saw during the summer and are anticipating just enjoying each other’s presence (and eating too!).

The boys are doing so well these days with sitting or staying within certain boundaries now, I have a feeling John and I will be able to enjoy conversations with people instead of always being on guard.  Our family knows also to keep their eyes open too and I think it will be a great time for the boys as well.

Ethan may just make the rounds sitting in laps and grinning into the lucky recipient’s eyes with a big grin and tilt of the head and maybe a little chuckle as if to be sharing a joke without a single word.  He will likely find a decoration with which to stim with and spend some time happily spinning something standing in front of the fireplace or piano.

Andy may try and engage someone in a game of “catch me” and spurt out his “Ah hah!” with a boisterous spinning jump turning his head to see the reaction of the person he is trying to engage.  I can almost hear his thoughts “Is he gonna chase me?”  He will probably try to check out the kitchen for some goodies or steal a drink or two.  He will also likely cover his ears when we start singing and playing Christmas carols.

It is an enjoyable time where at some point we will remember what we are celebrating and spend a little time talking about the birth of our Saviour, the Lord Jesus Christ, Wonderful, Councillor, Mighty God, The Prince of Peace!

Day 174: Family Vacations

It is with great fear and trepidation when we plan for a family vacation for all 5 of us.  Any location is closely examined with great scrutiny and almost always must contain either a large body of water or a pool.

Considerations must include facilities to store pre-made GF/CF meals and snacks and to re-heat them.  There must be separate beds if not separate rooms for the boys and a DVD player for those early morning, “I’m in a strange place”, wake ups.  An end unit is preferred and not on floors with people underneath in case of stomping fits.  Cottages are really, really nice!

We need to carefully plan our trip to be sure there is sufficient entertainment for the boys to keep busy.

If the destination happens to be longer than a 4 hr. drive home, we need to have a back up plan for crazy meltdowns and unexpected displeasure with the living conditions.

We need to pack food, clothing, toys, dvds, pull ups and wipes, lots of plastic bags and laundering supplies as well as coins for that.  We need to pack medications and melatonin and vitamins.  Swim gear and toys for the water and sand or dirt.

We never fly with the boys.   In any of my imaginings of that experience, there usually is running in the airport and fits in the security line and grabbing of metal detector wands maybe even a forehead kiss to the security folks. The only pleasant thing for the boys would be taking their shoes off. On the plane, I just can’t imagine being on there for any length of time before getting kicked off.

Needless to say, we would not be travelling off the continent with our boys unless it was by boat and the water enticement would leave me with no sleep at nights.

My boys LOVE going on drives.  The motion and white noise is soothing to them and there is lots to see.

My dream trip would be to drive them on a nice scenic drive to a coast in a motor home to swim in the ocean staying at campsites along the way!  Making lots of stops to hike or picnic or to play at a playground.  

Day 173: Autism and the Church

Our chapel has just purchased some land to build a new building in another location in a subdivision close the our current building.  It is all very exciting to us as we make the plans to break ground in the spring.  It reminded me of a post I wrote a while ago about Autism and the Church so I am reposting it here with a few edits.

The incidence of autism has risen to 1 in every 100 children that are affected.  The numbers are staggering considering ten years ago it was 1 in 10,000.  The government is just now coming to terms with the epidemic and beginning to consider an autism strategy to deal with what will soon be a burgeoning population of adults with autism.

As a church and family of God, I think it important also to be prepared to deal with Autism in our assemblies as well.

Scripturally speaking there are a couple of instances I can recall, where people with disabilities needed help from friends.  There was a paralytic man who wanted to see Jesus and his friends lowered him through the roof to the Lord. Another man had been sick for a long time and sat by a pool that could heal him but he had no friends to put him into the water.  Autism is a fairly new epidemic and there isn’t really scriptural reference for handling Autism in the church.  So most of what I say are practical helps.

First of all, there really has to be a genuine love for this special group of people and their families.  It is not an easy disorder to deal with as a family and having the love of those in our assemblies makes a huge difference! Believe me, it can be a balm to the wounds of the heart to know that your family is truly loved.

That being said, an effort is required and it begins with educating yourselves.  Don’t always depend on getting all the right answers from the family members either.  I know I have been approached by people in meeting and it really is hard to get everything covered in a 5 minute conversation by the coat racks.  So look it up on the internet.  Read blogs by parents of children with autism and their every day struggles.  There is actually a blog called The Inclusive Church with great, practical ideas on how to include kids with Autism!

Don’t ever make assumptions!!!!  Autism is a disorder where children have odd behaviours and outbursts because of unusual things like a smell or buzzing lights.  These parents have children that do not have a wheel chair or obvious physical features that indicate that there is a disability so they are used to being judged as terrible parents based on the behaviours of their children.

Asking parents what you can do to help is helpful to some degree.  But I do have to admit that I sometimes don’t even know what to ask for with regards to help.  Certainly give them time to come up with a list for everyone.

Some children with autism are darters.  They run off very quickly and since they often do not understand dangers like cars and parking lots or even the concept of being lost.  They will walk away and keep right on walking.  So please stop a child with autism from walking/running out of the building without their parents or an adult.  Depending on the severity of the child, you may have to grab their hand or physically block them but the danger of them running into a car is very serious.  And I have been in situations where my son has gotten away from me and people have just watched him run past them with me running in hot pursuit.  It sure would have been nice if that person had stopped him keeping me from having to run 1/2 a block to catch up to him.

Even if you haven’t done the research, please don’t be afraid to interact with children with autism.  Even if they can’t talk, you can easily say “hey, kurt, I love your slinky.  That looks like it’s a lot of fun to play with”  “give me five” or “you are growing up.  Look how tall you are now!”  Don’t be afraid even if it is awkward for you talking to someone who may not understand or can’t respond or can’t respond properly.  You will get better at it and you will get to know their likes and dislikes.  It is far worse for you to ignore this family out of fear of what to say than to engage with them and experience a few awkward moments as you get used to it.  This is part of showing that love and it is showing that you are making an effort!

This is a big one!  I know that friendships in the assemblies are important to kids in that they have positive influences on each other and it encourages them to stay in the assemblies.  PLEASE, PLEASE, encourage your children to include children with autism or even kids with social awkwardness.  As a parent of children with social difficulties one thing that happens is, we mourn the loss of what we had dreamed for our children including social acceptance and popularity.  I know that I had envisioned my children being social butterflies and having wonderful, lasting friendships in the assemblies that would carry into their adult life just like the friendships I had as a teenager.  It is difficult for many of us parents to see our kids struggling and being left out of the other kids sleepovers, movie nights, birthday parties and outings because of their social awkwardness, it just breaks our hearts.

I think it is a help to a parent to have their children’s peers teaching their child social rules and what is acceptable and what isn’t.  I think it may even be more affective than a parent teaching them not to mention how beneficial it is for the “normal” kids to be making an effort to include these kids on their own personal growth.

Social clicks and special activities amongst them that continually exclude others who are not so popular aren’t necessarily encouraged but are present sometimes.  When this happens, kids with Autism don’t get a chance to benefit from social learning opportunities around their peers and the social kids don’t get a chance to learn the ability to socialize with kids with Autism.  It’s a lose/lose situation.

“If you love only those who love you, what reward is there for that? Even corrupt tax collectors do that much. If you are kind only to your friends, how are you different from anyone else? Even pagans do that. But you are to be perfect, even as your Father in heaven is perfect.” Matt 5:46-48

I realize how difficult this can be in taking a lot of folks out their comfort zones to reach out and make an effort to the people affected by autism.  But if you can just imagine for a minute how much these families are struggling and really what you may be giving up is nothing compared to the daily struggles they face.  You are really only risking growth and an opportunity to truly reflect Christ in your life and an opportunity to minister to Christ Himself. “And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’ Matt 25:40

Day 167: Thanksmas / Reunion

Wow,  we are over half way through 31 days of Autism Awareness.  To tell you the truth, I didn’t think I would make it this far.  I am enjoying the challenge.

Today I have been making arrangements for sitters for our annual Nicholson Thanksmas Weekend.  We have been celebrating Christmas with John’s side of the family on the US Thanksgiving weekend in Port Colborne for a couple of years now.  It has really worked out well for all of us and we all look forward to it as it is a weekend event and this year it will start on the Thursday to include a Nicholson Extended Family Reunion.  That is a lot of people but we are excited about that too since it hasn’t been done for a very long time.

Since we will be gathering on Thursday and Friday nights and then all day Saturday, we have made arrangements for the boys to be babysat since too much of those kind of outings would drive them nuts.  We have had a tradition of bringing the boys for most of the day Saturday but then asking workers to pick them up in the afternoon to take them for a swim at a local waterpark as a treat while we do the gift exchange.  The gift exchange for 20 plus people can take a while since we do it one person at a time and there is more than one gift for each person to open.  I like that way of doing it so that you can see the reactions on the faces of those you have given to.  The boys would not do well sitting through 2 hours of gift opening.  They barely are interested in opening gifts themselves.  Which leads me to my thoughts for today’s post.

Gifts for kids with Autism.  This has always been a challenge for us.  To find toys that are appropriate for their developmental level and that they are interested in and that is durable is a huge task.  Most toys that are specially made for kids with developmental delays and sensory processing issues are very expensive and can’t be bought at Walmart.

My boys love vestibular movement, running, climbing, jumping and swinging.  Most gross motor toys are made for little people so climbers, indoor slides and ride on toys are way too tiny for my 13 and 14 yr old boys.

Other toys have to withstand being tossed across the room and being stepped on by 150 lbs. of weight. Whatever they get will be mouthed, ripped and banged.  Not to mention that they almost never are used appropriately so to as get any educational benefits from them.  So this would include sorting games, puzzles, and games with rules and small pieces.

We know that they will always enjoy toys for them to stim with but we don’t necessarily want to encourage stimming all the time.  We also know that they will enjoy toys that they can chew and toys for the bath tub.  But there are too many relatives and birthdays and Christmas gift holidays to keep doing that and not overflow the tub with toys.

Books are great.  They love the ISpy books and the bright Veggie Tales books but they get ripped, yes even the board books get ripped.  So lately any books given have to have the pages taken out, laminated and put back together with rings.  Crazy but they love them and enjoy reading while waiting for the bus and at night.

They love musical cards.  I keep them in a basket in the living room.  A few have ripped and been thrown away but for what they cost and how much use we get out of them, they are very handy and economical.

So why did I tell you all that?  I am not sure.  Just another aspect of our lives that isn’t quite the norm.  I have recently had to send a list of ideas for gifts for the boys to family members so it was on my mind.  It’s hard to believe I am talking about Christmas already.  I suppose I should start looking for winter boots too while I am at it.  They are a rare commodity when the snow actually starts to fly.

Day 158: Thanksgiving

Today is Thanksgiving in Canada.  This morning Andy and BJ are sitting in the living room and watching a Veggie Tales movie while Ethan sleeps in.

I have to be thankful for the progress this year in being able to sit in the kitchen while Andy sits in the living room peacefully with his big brother and the other sleeps.  This was not so much of a possibility even last year.

Andy still had to be closely watched last year and sitting in the living room meant that things were going to get tossed, ripped or scattered and the front door was quite the draw for him.  I am also grateful for the added help from my oldest with Andy and Ethan.  BJ loves his brothers and has been such an increasing help with them over this last year.  It has been such a blessing!

We had a good night’s sleep and I was up for at least an hour before I was joined by Andy.  I think that is a blessing, I will never take for granted again.

I enjoy a little time to myself in the mornings before I am required by someone for something.  That little bit of time to take care of my own needs physically, spiritually and mentally before tending to others needs is a God send.  The day just seems to flow all that much better when that happens.

I had an interesting read this morning that I thought I would share.  I must note that it really has nothing to do with what I have written here but it was an incredible story of the word of God I know and love and am thankful for in the mornings.

From “Seed Thoughts” at www.goodnewsgranary.org

George Whitfield (1714-1770), who was used by God to spread the Great Awakening, became perhaps the best-known preacher in Britain and America in the 18th century. In May of 1750, after hearing Whitfield preach, John Thorpe and three friends attended a local “Hell-Fire Club,” an atheists’ gathering. To amuse his friends, with amazing accuracy Thorpe recited the sermon he had just heard Whitfield preach. With remarkable tone and clever mimicry, John Thorpe presented the preacher’s message until, suddenly, he slumped into a chair and cradled his weeping face in his hands. With a self-inflicted wound, he had been converted under his own preaching! For the word of God is quick, and powerful, and sharper than any twoedged sword, piercing even to the dividing asunder of soul and spirit, and of the joints and marrow, and is a discerner of the thoughts and intents of the heart”(Heb 4:12). Subsequently, John Thorpe was greatly used in Bristol in the salvation of many.