Overwhelmed but Blessed

In October, I found out that my daughter is allergic to whey, casein, eggs and wheat.  I also learned that my middle child is having absence seizures.  My oldest is, as he has always been, a very special quirky boy with ASD.

My daughters allergies have required a lot of adjustment.  But she loves to eat, so what could have been difficult has been downgraded to a minor inconvenience.  Even though she is only 2 yrs old, she avidly avoids anything she knows will make her tummy hurt.

My middle child, Bumblebee, has the seizures, but they are so mild that medication is not needed.  We do have to watch to see if they get worse.  Most of the time, we don't even know they occur until he starts to complain of a terrible smell (a side effect of the seizure).

C-note is thriving in our homeschool environment.  Does that mean we don't have bad school days like anyone else? no.  It does mean that he isn't dreading going into school every day.  It means that I don't have to take a wailing child into a place that is distressing for him.  I also don't get notes from a teacher, almost daily about his "bad" behavior when he finds something overwhelming.  The weekly parent/teacher conferences are gone too.  He loves to learn new things.  He wants to know everything, about everything.

Life isn't perfect.  Things can be difficult, but they could be worse.  Lil' Bits allergies, while increasing in severity, haven't put her in the hospital.  Bumblebee doesn't collapse for his seizures and doesn't need anything to control them.  And C-note is calmer and happier than he has been in a long time.  We have had drastic changes in the past year, but they have all been for the better.

I am truly blessed.

Tips for Traveling with an Aspergers Child

Traveling for an ASD child can be difficult; but it doesn’t have to be.  I just returned from a month long trip.  Two weeks I traveled with all of my children and two weeks without.  While am not an expert on traveling with ASD children, I do make at least 3, 1 week+ trips per year with one.  My sons travel needs are different than my other children.  These are some tried and true tips that I’ve used over the years:

Traveling TOGETHER:

1.       Don’t talk about the trip until 2-3 days before leaving.  If you start talking about it earlier, anxiety and worry has time to build.

2.      Let him help in planning.  This means to let him pack some of his favorite things (books, mind games, lovie, ect.) or letting him suggest activities when you arrive (make sure to follow through).  This will give him a sense of control and gives something to look forward to.

3.      Make a daily plan, and STICK with it.  It can be tough to do this.  I’m actually terrible about it.  This doesn’t mean to plan out every hour of every day.  This means that you TELL your child “we will do X, Y and Z today”.  Tell him how long you plan to stay at each thing, or what time you need to arrive/leave.  

4.      Pack things for mental retreats.  It is likely that your child will have times that he needs to retreat from the activities and simply exist quietly for a time.  Buy a new fact book, coloring book, or a maze book.  Whatever makes your child feel rested and at peace, even if it’s a blanket he can hide under. 

5.      Remember to plan ‘down time’.  This really goes along with #3, but it’s extremely important.  No child can go all day without becoming tired, and being tired and in a strange place is a recipe for disaster for an ASD child. 

6.      Know your child.  If your child can’t take loud noises, don’t take him to a drag race.  If you think he would enjoy it, make sure to take the strongest ear protection you can find.  You might have to miss things you would enjoy, but really, how much will you enjoy it if your child is miserable and crying/screaming.

Leaving you child with a CAREGIVER:

1.       Don’t leave them with just anyone.  Your child has special needs.  Not everyone will understand this.  Make sure the person that you are leaving your child with understands his differences and is willing to be patient.  Outline the things he needs to feel safe and happy.

2.      Make it close to home.  This isn’t always possible.  The more familiar the location, the more relaxed he’ll be.

3.      Help him settle.  Try and stay with him at the new location for at least 2 days before you leave.  Trust me it helps.

4.      Take plenty of familiar activities.  This is not the time to learn new skills.  Take things that you know he’s comfortable with.

5.      Take a lovie or blanket.  Even if your child isn’t attached to something, chances are he will be when you return (it happened to me).

6.      Explain.  You know that things aren’t going to go like they do at home, but does your child?  Make sure he understands that different homes mean different rules and that is ok.  He might be allowed more of a certain type of food, or activity, this is no cause for alarm.  If you know something specific that will be different, make sure you tell your child.

7.      Relax.  The more relaxed you are, the more relaxed your child will be.  Prepare as much as you can and expect the best outcome.  You and your child will be much happier.

How my Sons Asperger's has helped my Marriage

My husband, Jeremy, is one of the most brilliant men I have ever met.  That brilliance is is one of the things that attracted me to him.  He also has no common sense, and I have often accused him of having the emotions of a robot.  He also doesn't notice when people are in distress, or respond properly to that distress when it's shown to him.  He loves to negotiate contracts while playing monopoly, I've learned never to play a game with him, he ALWAYS wins and takes it WAY too seriously.  If you've ever seen the TV show  "Big Bang Theory", the character Sheldon could have been modeled from my husband.  I love Jeremy greatly, and I know he loves me.  But, these quirks have caused us tremendous trouble.

This Summer, my oldest was diagnosed with High Functioning Autism, more commonly known as Asperger's and Sensory Processing Disorder.  Since that time, I've done what most moms would do; I have read everything about the subject as I could get my hands on.  The more I read, the more of C-notes behavior I can understand.  I also see a great deal of my husband in all of this information too.

While I have gained a lot more patience with C-note, I have also gained more patience with Jeremy.  I realized that he wasn't deliberately trying to hurt me with his words that completely disregard emotion.  I see that he doesn't understand how outcomes change based on other peoples emotional response.  Just as he confuses me, I completely baffle him because I am mostly ruled by my emotions.

He is completely ignorant of his differences.  Which can be a good thing, because when people give him strange looks, he doesn't even notice.  But, some of the things he comes up with, or thinks are normal can be socially unacceptable.  Privately, we discuss our interactions, and how people responded in them.  This isn't something I deliberately started, it just came about, but it allows us to talk about how things were received by others without him feeling as though he's under attack.

I talk about EVERYTHING with Jeremy.  I believe that secrets can kill a marriage.  I also know that if I don't tell Jeremy exactly what's bothering me and why, he won't get it and believes that I'm more irrational than I normally am.  Telling him about everything, also means that I tell him everything about what I've read on Asperger's, how it relates to our son and other things that are not 'normal' behavior.  I don't relate these things back to him, he's logical enough to connect the dots.  But I've noticed subtle changes in him.  He's trying to consider emotional responses, his choice of words don't sound as harsh and he's thinking about how environment may affect our children.  He's also less pushy.  Before, if he thought something should be done one way, then your HAD to do things that way.  He has greatly relaxed about that and has seen some brilliant solutions come from our kids, which makes him so happy.

I've also changed.  I've figured out that we will never have a "normal" relationship that my friends talk about.  He will never have a single romantic bone in his body.  Just because he doesn't tell me that he loves me, or give me a complement without being prompted, doesn't mean he doesn't love me, or think I did a good job on something.  He will get lost in his thoughts while I'm telling him things. He will find my crime drama shows predictable, and boring.  He also needs space with only his chosen stimulation every day, give it to him and he will interact when he's ready.  He is easily bored with traditional family activities, so I have to plan more adrenalin filled items.

All marriages have challenges.  Being married to anyone on the spectrum (even undiagnosed) presents an all of those and more. But through it all, Jeremy is still the same person I married.  I am more relaxed which helps him to be as well.  When I look at him, I see the man that I want to spend the rest of my life with.

I hope and pray that when C-note finds a woman to marry, that she will understand that he will never fit in her mold. He won't understand how much it hurts to hear that he's doesn't want to listen about something that means the world to her because it doesn't hold his interest.  This doesn't mean he doesn't care, he just doesn't understand why his actions upset her.

Isolation as a Mom

Being a mom can be a very isolating experience.  All moms are busy whether they work or not.  Moms who work go to their job every day and as soon as they get off they have to care for their family.  Moms who stay home deal with family issues all day long, take care of the house and are constantly on the go as well.  I don't think that we really mean to isolate ourselves; it just happens.

When you're a mom of a child who is 'different', in my experience, you isolate yourself even more.  It has nothing to do with being embarrassed or ashamed of your child.  It can be because you can be unsure how your child will react in a situation, or they can not tolerate a certain thing for long.  For me those were issues, as well as the sheer effort it takes to get out of the house.

To get out of the house, we have to start preparing at least an hour before.  C-note has gotten to the point where he can dress himself, but at times pant snaps are tricky.  Today, they were on completely backwards and he refused to fix it.

Bumblebee has to have clothes ready for him and reminded to put each article on.  He's always allowed to try himself, but we always have to turn around some garment.  Underwear is always backwards.  But at least he's getting real clothes on, there is a battle every time we leave the house because he doesn't want to get out of the Bumblebee transformer costume.  For him, shoes are always a 20 minute ordeal, I've timed it and so I know how to prepare for an outing.  And they aren't going to stay on very long even after we leave the house.

Lil' Bit is the easiest even though she is a prima donna.  She knows what she wants to wear all the way down to her socks and shoes.  Yes, she's 2.5 yrs old but she knows her own mind.  I choose my battles, though if I say she's going to wear the dress to church not pants, then she will listen...eventually.

These things can really wear a person out.  I'm exhausted all of the time and my nerves are constantly frayed.  Playdates don't happen.  Most people, unless they also have a child that also have neurological issues don't understand.  They will stop asking you over, I don't think it's on purpose, but since they don't understand your child.  People avoid things they can't understand.  Other people who have kids that are special like yours find it just as difficult to leave the house and would rather you visit them.

My boys need controlled environments, which isn't always possible.  We frequently stay home for my sanity.  Yet, I find myself depressed because I don't have any friends that I can call and hang out with.  My children didn't create this isolation though.  I did.

Things get a little easier every 6 months or so and maybe I will find another mom who is willing to accept that we are a different kind of family.  My kids are with me 24/7 because it helps them thrive is a world that's overwhelming to them.  I don't want to hear how 'not normal' my boys are; I already know.