Saturday, June 20, 2015

Keeping my "Pinterest Fail"

Let's admit it, we've all attempted a cute idea or two on Pinterest and most of us have had our share of Pinterest fails.  Well, this Father's Day was no exception.  I decided to spend a really (ridiculously) long time drawing with chalk all over our back porch to make a super cute card for Cret for Father's Day.  Believe it or not, this was our BEST take.  Half of Jordan's face is cut off, Tyler is doing I don't know what and Jacob refused to lay down.  I could feel the frustration coming on.  After many photos, I said to the kids, "Let's go in, this isn't working." 
Feeling a little more disappointed than I'd like to admit, I came inside to look at the camera one more time to see if I even got one salvageable picture.  I laughed out loud at the silly pictures I captured.  Then I was reminded...We are not a "Pinterest Perfect" family.  No one is!
How much time do we spend comparing and hoping for things other than what we are given? Its such a complete waste of time when you actually remember that God, the creator of the universe, in all HIS perfection and sovereignty and love created us just as we are for HIM. WOW.  I do not want to pretend to be a "Pinterest Perfect" family. I want to celebrate the family GOD created in HIS perfection.  
And on the topic of Father's Day, my husband works very very hard to provide for this imperfect family created perfectly by God. He has sacrificed many things to do what's best for our family and seek God's will and I want to give thanks to our PERFECT God for exactly how he created us.  He gave our family the PERFECT man to be husband and father to us! 
AND I want to show Cret that he is an awesome dad to this bright young lady, silly goofball and wild little boy, and what better picture to show that! 
I decided to fully embrace the Pinterest fail and I decided to LOVE it!
Thank you God for all that you have given our family.
Thank you God for creating each one of our children in your image.
Thank you God for their unique and wonderful qualities.
Thank you God for a husband who always works hard and NEVER complains.
Thank you God for a husband who notices when I need help and offers it without me asking.
Thank you God for a man who seeks YOU in our marriage and in fatherhood most of all.
HAPPY FATHER'S DAY to you, babe!
HAPPY FATHER'S DAY to all the excellent fathers out there!

Tuesday, June 2, 2015

10 Excellent Ways to Help A Special Needs Family

A few years have gone by now since Jacob's diagnosis and although the challenges are still there, I feel like we are more adjusted to our new way of life.  Things are crazy almost all of the time, but I can make plans now and sometimes keep them.  I can function without feeling completely scattered and I can reflect back on some amazing things that have helped me get through these times.  I can also remember some not-so-amazing things. 
I hear from many parents who's children have recently received an autism diagnosis and I can absolutely relate to the stress, frustration, fear and all that comes with it.  Friends and family ask you how to help, but you become so emotionally overwhelmed that you cannot even seem to form an answer, much less have the energy to ask for help.  So, here are my top 10 ways that people have helped me and I feel like it made a HUGE difference to our family.
1. Don't stare during meltdowns, strange eye movements or hand flapping, or when we have to turn our child's head to focus and speak in a funny way to them.  Rather, ask us questions.  Autism parents LOVE to inform people about autism because we LOVE the idea of people learning to accept and understand our babies.  Don't feel like there are any dumb questions either, asking questions translates to caring.
2. If you want to help with babysitting, sometimes it easier to babysit at our house.  People have offered to babysit my son, but don't realize that he will be highly agitated in a new environment.  Its hard to say, "Yes, but can you come babysit at my house?"  If you want to babysit, sometimes offer babysitting at the parent's house.
3. Offer a play date between your typical child and our children with autism.  This is an amazing way for us to teach our children social skills and for our kids to feel loved and accepted by their peers.  There is also an added benefit to your child.  You can talk to them about children with special needs and being understanding and accepting.  These are valuable lessons for all children.  Don't be scared that your child will mess up or say something wrong, trust me parents of children with autism are quite used to awkward moments and extremely forgiving.
4. This is a biggie.  Please be understanding when we have to cancel plans last minute.  Children with autism often have meltdowns that are hard to calm, have anxieties in certain places, and many other things can arise last minute. Be aware that there are simply some places that we won't even try to bring our kids.  For us personally, its places by lakes or pools (that we aren't swimming in) and certain places that one of us has to run full speed to chase Jacob the entire time.  BUT please don't stop inviting us places.  There may be that one day that we actually can get out and have fun and trust me, it will mean the world to us.
5. Don't pretend like they aren't there. Make sure you say "Hi" or "Bye" to our children with autism, even if they don't say it back.  In church, there are a couple women who make it a point to stop and look at Jacob in his eyes to tell him hi.  It is so unbelievably kind to me that they show him this respect and kindness. 
6. If you want to hang out, sometimes its easier to just come to our house.  My best friend often grabs some snacks at the store and just comes over to hang out with me and laugh and eat snacks.  She knows I can't leave Jacob much and is so considerate to want to spend time with me even when I can't go somewhere special.  This really helps me to unwind and feel like I have had some friend time without having to leave my house.
7. Please know that answering the question "Has he gotten better?" is a really tough thing to do.  Autism doesn't typically go away.  There is no known cure for autism. So for many families, some things get much better, while a lot of other things start getting worse.  Instead, you may want to ask how they are doing or if they have learned any cool new things lately.  Also, please don't avoid asking how our child is or questions about them for fear of an awkward conversation.  If your desire is to show that you care, asking questions is a excellent way.
8. Cry with us.  This is for our family or close friends.  There is a time to encourage, but you'll know and you'll see it in our eyes when we just need a good cry.  Don't say, "It's ok, don't worry." Because often that makes the person feel like they should suck it up.  If you can see they need to let something out, just be there.  Maybe just agree that its hard and let us get it all out.  Sometimes a good cry is just what the doctor ordered.
9. On the flip side, when we call you panicking about the time our child rubbed poop all over the window or when we had to chase our child through the house because they refused to put their pants on while the repair man was there, please be EXTRA silly and help us to laugh! This really is the thing that has helped me the most.  My best friend almost daily has to remind me of the humor in most situations I call her about.  Sure its super stressful and scary, but you either cry and panic about everything or you learn to laugh and just go with the flow.  I love being able to call her and know that she is going to make me giggle about the things I've gone through that day.
10. Please don't send us research studies or the latest heal-autism-quick advice.  Chances are we have already read it.  Autism parents become research experts and are ALWAYS reading studies and finding tools for our children...ALWAYS.  Instead, send us encouraging emails or prayers or feelings of concern, that really means the world to us.  Recently, after the wandering occurrence, I received a kind email simply telling me that someone has been thinking of us, and it made my day and I know I can say the same for my husband.  Autism sometimes makes you feel very isolated from the outside world, so notes of encouragement remind us that we are part of the outside world. :) There have also been people who have told my daughter how important she was and what a great job she was doing being a big sis. Jacob has some serious needs, so balancing attention is a VERY hard task.  Someone else showing her support made her feel very special and happy to get that acknowledgment. 
So, that is my advice.  It may not be exactly the same for everyone, but these things sure help us out a lot.  I know there are many friends and families out there hurting for their loved ones who are going through this difficult time.  I wanted to give them some practical advice to help.  Please share if you know someone who may need it.

Monday, June 1, 2015

Autism Service Dog

Having a child with autism is definitely rewarding, but it also comes with its share of difficulties.  Though I know it doesn't compare to having a child with a life threatening illness, or physical impairment, having a child that is prone to eloping is certainly scary and dangerous.  I wanted to share how our life looks with a child that is in constant danger from himself. No two individuals with autism are alike, and many children with autism do not wander.  In fact, the saying goes "if you know one person with autism, then you know one person with autism".  However, I suppose before I begin on the undertaking that I will describe below, I wanted to inform my friends and family about our journey and the steps we hope to take next because I know we will need support and because I want people to be compassionate towards families with struggles like ours.
As most of you know Jacob was diagnosed with autism early on.  He wouldn't engage with us.  The look in his eyes was blank and he just stared right through us.  He wouldn't gaze at us, he wouldn't imitate our smiles, and it was devastating.  Through intensive ABA therapy Jacob has learned to communicate on a simple level indicating his basic needs.  Only this year has he learned to follow our point to look in a certain direction, but he still does not grasp the idea that he can point to something he wants.  Though he is reading and counting at a level far beyond his age, many things are still lacking in his development.  The main things include understanding danger and communication.  For as long as we can remember Jacob has had the desire to run.  In the autism world, we call this elopement.  Elopement is when a child who is physically, mentally, cognitively or emotionally impaired escapes, wanders, or runs away unnoticed or unsupervised. 
Our life right now looks a little something like this (in terms of elopement only):
Each day we must deadbolt our doors to ensure that Jacob is safe inside.  We wear our keys around our neck because if Jacob were to find a house key, he would immediately take it to the door to unlock it and run out.  He has even watched me (without my knowledge) put the key deep down in my purse, waited patiently until I went to the restroom, climbed onto the counter and dug through my purse to get the key, and went to unlock the door.  Thankfully, I caught him.  When someone comes over, we have to remember to lock the door because even one mistake could mean life or death or losing him.  If he notices the door is not locked, he will bolt outside straight into the street.  We have alarms on the windows and doors so we can hear if he gets out, so for now he is pretty safe in our home.  However, out in the world, its a whole different story.  Jacob will be 5 years old this month.  He yearns for freedom and independence. When we go to the grocery store, he no longer sits in the cart or wants to be held.  He wants to walk like most kids his age.  When we allow him to walk, he drags his feet to try and get us to let go of his hand and then will take off running.  He will not walk beside us, so we can rarely take him shopping or out to public events.  If we do need to go somewhere my husband usually has to hold him tightly to keep him from getting away.  I no longer have the strength to restrain him for long periods of time while he hurls his body back and forth, so I usually have to leave wherever I am right away when the behavior begins.  It really limits where we go as a family.  Of course, sometimes he is perfectly ok playing a game on our phone and riding in a stroller, but as he grows, he is becoming less and less impressed with being confined and we want independence for him.  The other day, some sweet neighbors were all gathering outside in our cul-de-sac.  To be able to talk with them, my husband and I took turns.  While one of us spoke with the neighbors, the other one chased Jacob around as he ran from house to house to garage to yards.  My husband would give me "the look" and then we would switch.  This is regular life for us.  Its not something that we harbor resentment about, it just is our life.  This is why I have been searching for answers for us.  I have spoken with several moms who have kids who were bolters and the same is true for almost each family, the elopement doesn't end until the children are teens.  Yesterday, I spoke with Jacob's doctor and she agreed that this behavior typically gets worse as children get older and smarter. 
To be honest, I haven't seriously considered any help until now because part of me really thought Jacob would outgrow wandering. Autism is a strange thing.  Even with all that we know about it and all the research out there, no one truly understands autism.  There is no known cause or cure for autism.  The stories in the media of children who wander are devastating and tragic and my husband and I have this burden each minute of each day. 
After Jacob's most recent wandering event, when he snuck out of a building and ended up outside, a friend of mine contacted me about autism service dogs.  She said that she would be willing to donate money through her business to an non-profit organization for Jacob if he got accepted into a service dog program.  As I have read more and more about these remarkable dogs, I can't help but to hope and pray that Jacob will be accepted into the program.  We have officially decided to apply. 
My hope-I realize that a service dog is extreme.  A part of me keeps thinking that people will not understand our desire or need for a service dog because they do not understand the risks that Jacob has daily.  I have decided to officially not care about what people will think and to just go for it.  As my best friend told me when I discussed my hesitation with her, "If there was a pill for Jacob to keep him from wandering off you would give it to him in a second.  This dog is that pill. It will keep him safe.  It's a no-brainer."  Another friend told me, " Making sure Jacob isn't in life-threatening danger every second is what's dramatic, not getting a service dog.  Getting a service dog gets rid of the drama."  I also discussed it with his doctor and several dear friends who all seem to agree that service dogs really change lives.  Not only will the dog keep him safe from harm, it will be trained to find him if he gets out, help him with social abilities and so much more. This is a new treatment for children with autism and I feel that it will be life changing for our family and most importantly, for Jacob.  A service dog would keep Jacob safe, give our family freedom to the outside world, and give Jacob independence.  I wanted to write this to ask for prayers.  It's generally a very long process taking between 12-24 months.
Please watch these videos to learn about autism service dogs.  These are examples of families like ours and watching these videos brought tears to my eyes as I imagined the possibilities a service dog could bring to our family.