The Beauty of Belonging

Have you ever been in a room with total strangers and still felt more relaxed and comfortable than with people you know?

It happened to me on Thursday.  I took my son to his therapy session at the center and as soon as we pulled into the parking lot there was just a peace that came over both of us.

As we entered the building I didn’t have to hastily grab his hand so he couldn’t run back out the door.  He talked to and counted the fishies in the tank as I checked in at reception.  The nice lady told us to follow the green feet to our waiting area and my son took her at her word.  His head was down as he bounced from footprint to footprint, almost crashing into people a few times…but here’s where a good morning turned great.

Those people he almost crashed into?  They smiled at him…and me!

They didn’t frown at him with a “careful there, kid” actually aimed at me.  They didn’t cast judgmental glances at either of us.  They didn’t offer me advice on how to discipline my son.  They just smiled and said, “Good morning.”

In the waiting area were two other mothers with their sons.  We exchanged greetings and smiles and turned our attention back to our boys. It seems pretty normal, maybe even a bit rude to not engage in a bit of small talk; but it was wonderfully freeing.

My son loves to bolt away on me and those who know me well know that if we’re out and about I will maintain a conversation with them to the best of my ability, but I will constantly be scanning to make sure he is still nearby and safe.

The situation was the same on Thursday, but I didn’t have to explain myself.  One of the other moms was sticking very close to her boy to make sure he didn’t end up on top of a toy about to jump off.  Mom number 3 was watching her much younger son pull himself up on the furniture and take a few steps.  Her hands were constantly ready to shield his head from bumps with his very frequent falls.

None of us demanded explanations.  None of us shot the glance that told each other to lighten up.  None of us asked, “So what’s wrong with your kid?” (yes, people do that).

As the littlest boy hung on to the big round coffee table for dear life, my boy walked around it tracing the edge with his finger.  As he got close to the little one his mom looked at me before I could even tell my boy to be careful or go the other way and said, “It’s okay, they can just work around each other.”

And they did.

It was that exact moment that my heart soared as I realized that this is our tribe.  These people with similar circumstances asked nothing of us by way of explanation.  We all just got each other.

If you have a child with special needs, you know how beautiful these moments are.  Moments where they can be themselves and not a label or diagnosis.

I had coffee with a friend this morning.  This particular friend has been one of my son’s favourite people since day one and continues to be so.

She is another one who just allows him to be who he is and she embraces his uniqueness without trying to “fix” him.  She also doesn’t let him get away with bad behaviour on her watch because she knows that he knows better (just like every other kid out there who tests boundaries).

These beautiful moments pop up from time to time and I thank God for each and every one of them!

On Valentine’s Day I dropped all 3 kids off at the free babysitting night that a church in town put on as a gift to parents.  When I went to pick up the kids, I had a brief conversation with one of the supervisors who also knows my kids from daycare.  She mentioned that during the movie my son was walking back and forth under the screen but she made sure that none of the other supervisors tried to pull him down as that was just his way.  He wasn’t being loud or disruptive, he was just doing his own thing.

In our church, basically every Sunday, most of the people will keep a subconscious eye out for my son.  They do this because they know that he is a runner and chances are that at any given moment me or my husband will come looking for him.  Without us saying a word, we often get a, “He went that way.”.

These moments make my heart smile.  These moments sustain me through the more difficult moments.  These moments remind me that God is good and that He cares about us and that my son will be okay.

These moments are a gift and I cherish each and every one.

 

Wendy

In the Midst of the Battle

*This post is not intended to garner sympathy or attention for myself, but rather to help you understand what it feels like to sink into/be in despair.  If you have never experienced this (be thankful), my hope is that this will help you understand those around you who are struggling with this darkness.

We KNOW that life isn’t is bad as it seems in those times, but we feel stifled by the despair nonetheless.  A hug is more helpful than being told to “suck it up”.*

 

I’m sitting in a hospital bed right now, fighting two battles.

The first battle is and infection in my foot.  It started Wednesday afternoon and took a hold of me swiftly and severely!  At first I thought I had caught a crazy stomach bug – I’ll spare you the details.  My husband came home from work to find me under 5 heavy blankets shivering violently.  After he added a heating pad my body calmed down a bit.

The next morning I saw the doctor because my foot was getting painful and I knew there was more to this than the flu.  He gave me antibiotics and strict instructions to monitor things closely and go into Emergency if there is even a hint of spreading.

10PM that night we called a friend over to stay with our sleeping kids while my husband took me into the hospital where I was started on Intravenous antibiotics.  Perfect, I thought, a couple days and I’ll be as good as new!  We left the hospital with crutches and an appointment for my next dose of IV.

I’m not sure what I was expecting, but the next morning did not find my foot better.  I was hoping for some improvement, at least a little.  Deep down inside of me, the other battle was beginning.

This was Friday morning now and my weekend consisted of laying on the couch with my foot up and going to the hospital 3 times daily for IV.  By now the pain had subsided (mostly) but the swelling was not going down.

Monday morning I saw the Doctor again and he pleaded with me to let him admit me into the hospital.

“What about my kids?  I have to look after my kids!”

“Please think about it.  We should be seeing better results by now.” he gave one last plea.

I hobbled to my van and texted my hubby what had just been said, put the phone down and drove to the  hospital for dose #11.

The nurse gave me the same pleas.  My phone buzzed.  I opened the text from hubby telling me he will take the week off so I can get better.  I got one of the good ones!

I relented and the process started to get me all set up in my tiny cube of a room.  Sterile and windowless.  That is how my soul was beginning to feel too.  The ticking of the clock and the hum of machines to keep me company I was feeling forgotten.  I’ve had visitors and that has been great, but where has God been for the last 6 days?

I chastised myself for letting my emotions get the better of me.  I know – I KNOW –  that He has not abandoned me, but the invisible infection of my heart was telling me differently.

Maybe if you were a better person, the infection hissed, this wouldn’t be happening to you.  It’s because of every bad thing you’ve ever done.  You deserve this.

You might as well give up now.  They’re not telling you everything – this is way more serious than they’re letting on and now your kids have to grow up without a mom.  Just pull the blanket over your head and go to sleep.  You can’t fight it – just give up.

STOP IT! I scream inwardly.  Lies.  All lies!

Not that I’ve never done bad things, I have and do and will because I’m human.  But I’m a forgiven human washed clean by the blood of Christ!

But there are moments when “standing on the promises” are not enough and the infection overwhelms me.  Last night I struggled, but held it together.  Today I couldn’t.  Today is Tuesday which makes tomorrow one week since this started and I’m no better off physically and definitely worse off in my heart.

Today I have cried.  A lot.  Today I am not strong.  The nurses notice and are being extra delicate with me.  Today Christ’s strength is made perfect in my weakness [2 Corinthians 12:9].

In my darker times of depression, I find myself running to God almost superstitiously.  Maybe if I pray just right, or read the right number of chapters of my bible, etc. then God will heal me.  I know that’s not how it works.  He’s not a genie in a lamp that needs to be rubbed exactly 3 times then will grant me my wish.  I’m believing for healing.  I’m expecting for healing.  But I’m listening for what God has to teach me in this too.

As I type this, I’m listening to “Blessings” by Laura Storey.  If you’ve never heard it, please take a moment to listen.  This song has seen me through many a dark time and it is perfect for where I am right now.

So where does this leave me?

I will fight, I will persevere because I know I am not fighting alone.   God is with me.  Family and friends are praying for me.  I’m anticipating a few more days here yet.  The battle rages on, but ultimately it has already been won. flourish

Today is the following Monday.  Almost a week since I wrote this last post.  I have been out of the hospital since Thursday, but have since developed an allergy to one of the medications.  The beauty is, I can laugh at that now.  It’s a testimony to how far God has brought me out of this pit.

Last Tuesday, when I wrote the original post, I did one of the hardest things possible when in such a deep depression – I reached out.

I called a few of my trusted friends and told them that I wasn’t doing well at all and that I couldn’t cope on my own.  These people prayed for me, and they prayed hard.  That afternoon already saw a huge improvement in my mood.

My husband brought me some of my favourite comedies to watch and smuggled in some popcorn for me.  All the little things like this definitely helped pull me out of my pit, but ultimately it was God who healed the infection in my soul.  He also continues to heal the infection in my foot and each day sees great progress!

Wendy

 

When Help isn’t Helpful

Remember when you were in grade 12 and everyone was giving you advice on what to do with the rest of your life?  What school to go to, what career to pursue and so on?

Or when you were dating and people who cared about you tried to advise you on who to go out with and who not to?  How to behave on your first date or when you meet his or her parents?

Then you eventually settled down, got engaged and started planning the wedding.  “Oh, not those flowers!  Great Aunt Ida is allergic and even though she probably won’t attend she might and we’d hate to give her an attack!”

“In my day, we didn’t register for such extravagant gifts.”marriage meme

“You’re choosing that song to walk down the aisle to?  Are you too good
for The Wedding March?”

Then you weren’t even out of the reception before everyone starting telling you how to be successful in marriage and when babies should come.

And then the babies start coming…and the advice flows freely once again.

“Don’t eat that when you’re pregnant.”

“Just rub a little whiskey on baby’s gums to soothe the teething pain.  Helps baby sleep too”

 

I’ve heard it all, and so have you.  If I’m honest with myself, I’ve probably even dished out some of this one of a kind, well-meaning advice.  If I’ve ever been this “generous” with you, I’m sorry!  To my nephew who graduates this year, I’m extra sorry because I know that while telling him to ignore everyone and figure out what he wants for himself, I’m pretty sure I’ve thrown some of my own wisdom (and I use the term loosely) into our conversations.

Most of the time, these “pearls” are annoying.  In certain moments they can be downright maddening.  However, I truly believe that in most instances, they are given with the very best of intentions.

My first baby was a petite little thing.  After 5 days of struggling, both she and I got the whole nursing thing figured out.  She continued to grow and develop, but not fast enough for some people’s liking.  I was told often to put her on formula because she was starving to death.  She had regular checkups with the Doctor and Public Health Nurse, both of whom assured me that she was right on track.  I continued with what I thought was best and she is a thriving 6 year old.

My second baby took to nursing immediately, but wasn’t gaining weight.  At 6 weeks he was below birthweight so the Doctor and I both thought it best to put him on formula.  He began to grow and thrive and I felt confident with my decision.baby meme

Would you believe that the very same people who told me that my daughter was starving and should be on the bottle told me that my son was being cheated out of the benefits of breastmilk and if I was any kind of mother I would be nursing him?!

I’ve always been a heavy girl.  I’ve had more “helpful” advice on that subject alone than one blog can handle!  “Do you really need that?” can be one of the most destructive phrases to utter to someone who already struggles in this.  You want to know how I feel when someone says that to me?  It does NOT make me want to put down the piece of cake and hop on the treadmill; it makes me want to eat all the remaining pieces of cake…with ice cream.

When people first heard that I had met this guy online, I was cautioned continuously that he was probably a serial killer.  I assured everyone that I was being smart about it and wasn’t meeting him in the middle of the night at an abandoned warehouse.

Not everybody agrees with the way my husband and I live our life.  Certain people have made that very clear!

One family member has suggested more than once that my husband work up north for weeks at a time to make more money.  We have discussed this and decided that our time together as a family is more valuable to us than a bigger paycheque.  I have friends whose husbands work away for stretches and that works for them.  They have made the best choice for their family.

Then we told a few people that we were trying for baby #3.  “You’re crazy!  Three is the hardest number of kids to handle.”

“You already have a boy and a girl, why mess with the perfect family?”

“You’re going to homeschool???? Aren’t you worried about socialization?”homeschool meme

“Homeschooling will make your kids resent you! I could never do it.”

“Maybe if you were a little harder on your kids….”

“Maybe if you weren’t so hard on your kids…”

You’ve heard all the lines, you’ve probably even uttered one of two of them.  You’re just trying to help.  I know that and that’s why I can usually just force a smile, say thank you, and pay my kids to cry make an excuse to leave quickly.

I mentioned in a previous post, that we started seeing the signs of Autism in our son from the beginning.  Others saw it too and tried to point them out to us.  This is where the “help” can be especially hurtful.

Coming to terms with the fact that your child may not be “typical” is one of the hardest things a parent can do.  It has nothing to do with loving your child less, or being ashamed of them.  It has everything to do with knowing how difficult life will be for someone so innocent and fragile.  It has everything to do with your fear that you are not going to be enough as a parent to give this child everything he or she needs to have the best life possible.

Can I offer some well-meaning advice to you (the irony is delicious)?

If you know someone in this situation, please don’t point out the “obvious signs”.  We see them, we know.  We are kept awake at night worrying about our child’s future.  What we need to hear is that our child is cute, and perfect (because every person is a miracle!) and that you love them.

When that diagnosis comes, an “I told you so” or “I always wondered” can be downright harmful.

“Okay.  He’s so lucky to have you guys as parents.”

“How is everybody doing with this information?”

“I love you all.”

Those are the things we need to hear.

We’ve already read every study.  We’ve already looked into the latest miracle treatment.  Yes, we’d love for you to babysit once in a while so we can get a break.  No, you don’t need to try to “fix” him while you babysit.

I know you mean well.  I know that you have never intended for your words to wound.  I know that I would be heartbroken to find out that my “help” was hurtful to someone I care about.  So, I resolve to watch my words.   Better yet, to have significantly less words in most circumstances.  I promise to do my best to ask you what you need instead of telling you.

I’m not going to be perfect at this, but please forgive me.  You know that I mean well!

 

Wendy

 

I’d love to hear some of your favourite pieces of advice; either given or received!  Please leave a comment, and remember to keep it respectful.

 

 

Beyond the Baby Blues

Depression has been a part of my story for as long as I can remember.

I wasn’t always the one battling it, but I can’t remember a time that either I or someone that I love hasn’t been touched by it to some degree.

As I look back at my teen years now I can see that depression had a stronger hold on me then than I was aware of at the time. I just thought I was extra moody.

The first time that I recognized it in myself was about 10 years ago. I had a job I loved with people that I really enjoyed, but the stress of being middle management was getting to be too much for me. Having a boss that throws you under the bus constantly in front of your staff was tough to deal with. It was at that time that I first sought medical help. Eight months of medication helped me feel human again and I could now deal with things.

I had a few bad stretches over the next 7 years, but nothing that some relaxation and perspective couldn’t cure.

After the birth of my first child I had a few months of baby blues, but I can clearly remember at the 4 month mark waking up one morning and suddenly feeling like myself again. It was great!

The birth of my second child brought the same fog, but not for as long a stretch.

The birth of my third child; that brought on experiences that I wouldn’t wish on my worst enemy.

Labour with her was long and complicated, but after 46 tense hours, here she was! My first thought was that I couldn’t hear her cry and the there was a crowd of specialists around her for what felt like an eternity.

Eventually I got to see my sweet baby girl and get settled into my room in the hospital. She was born in the wee hours of the morning so my Doctor gave me a few hours to rest before coming to check on us. We went over all the usual questions and I remember her crying in the bassinet and me not being overly concerned with picking her up.

My Doctor then mentioned that for the next few weeks I would have to very closely monitor her breathing as they had to “aggressively revive” her immediately following delivery. That explained the team around her.

I was already having trouble bonding with this beautiful baby and now I was afraid to try! God, why would you bring us through all these complications just to have her die right away? My heart can’t take this!

The next day the Doctor came to see us again and I pushed him to discharge us. He felt strongly that we should stay another day but I NEEDED to go home. I didn’t realize it then, but I was going crazy being alone with my thoughts all day and night.

We got home to 2 sick kids. They just had colds, but now I was scared to have them anywhere near baby!

Over the course of the next week, our very dear neighbor passed away unexpectedly, we had a chicken pox scare, and several trips into emergency with my baby because she seemed to be struggling to breathe.

I’m so thankful for the our doctors and nurses who saw the panic in my eyes and soothed me instead of laughing at me or waving me off.

I wasn’t resting, I wasn’t eating well. I wasn’t enjoying life. Something just wasn’t right. I talked to our local public health nurse and explained to her everything I was going through and that I just couldn’t relax. I felt on edge constantly. We talked about anxiety and a few things to try and arranged a follow up. I followed her advice, I cried out to God often to take this uneasiness from me. I tried to be a good mom despite feeling like my world was spinning out of control.

A few weeks later my oldest daughter got sick. High fever, lay on the couch, no energy sick. Up to this point she had never been like that. Nothing ever slowed that girl down, so when she was so sick she that she had no interest in anything it just added more panic. I took her temperature obsessively and called my mom and sister frequently for advice or just a voice to calm me down. I couldn’t stop crying; I was convinced that I was watching my little girl die!

It took about 2 weeks for her to recover, physically. Emotionally, however, she was clingy and shy and refused to let me out of her sight. She was 4 at this time and my son was almost 3 and the signs of Autism were getting stronger. Another worry to add to the pile.

I stopped taking hormone based contraception as I knew this was adding to “the crazy”. I also sought out professional counseling through Public Health. My counselor was wonderful and helped me in dealing with my oldest daughter as her neediness was getting worse. Just talking to someone who I could be completely honest with and not have to worry about hurting her feelings or who she’d go tell was helpful in itself.

We came to the conclusion that my obsession with my kids’ health likely stemmed from the issues my youngest had at birth. We also determined that my brand of depression had a lot to do with my inability to express emotions. My depression generally doesn’t show up as sadness, but anger. I don’t get violent and have never had thoughts of harming myself or my children, but I overreact to the most insignificant situations and I’m quite sure that the whole world is against me.

It was early summer now and I was starting to feel better. My counselor told me that she felt we had gone as far as we could for now but I was always welcome to call her back if I needed.

We headed off to Family Week at our Bible Camp for a much needed holiday.

I’m an introvert so having a baby along was a great excuse for me to sneak into the camper for naps/alone time with her often with no questions asked. Something happened to my oldest there too – suddenly she became herself again! No more clinging to me for dear life or screaming her head off at the thought of me being more than ten feet away from her. It was wonderful and freeing!

Things started looking up, but then fall came and the anxiety and depression were getting out of control again. I had friends and family offering advice constantly. I had people quoting bible verses at every turn. 1 Peter 5:7 seemed to be everyone’s favourite, “Cast your cares upon Him [Jesus] because He cares for you.”1peter57

To be clear, I BELIEVE the bible completely. I don’t disagree with the word of God at all, but in those dark times my heart couldn’t stop worrying.

One of the most hurtful days came with a well meaning phone call from a friend. She just wanted to see how I was doing and if there was anything she could do for me. We talked for quite some time and I was feeling a bit better. She then asked me, “How has your prayer life been?”.

It was like the rug was pulled right out from under me.

Throughout all of this I had been seeking God with everything in me, so to have someone suggest that perhaps I wouldn’t be having such a hard time if I were a better Christian was a crushing blow. I spent the rest of the day in tears.

Winter came and so did endless colds and infections. Tonsillitis and Strep Throat were a constant presence between my 3 kids. During this time, we also discovered the hard way that my youngest two are allergic to penicillin.

The anxiety was taking over my life and my kids started dreading me kissing them on the forehead because they knew that I was really just checking for a sign of fever.

I knew that I needed medication to get this under control but I wanted to wait 4 more months until my baby turned one. I was determined to nurse her for one full year (something I was unable to do for my other two). I also knew that nursing would give her antibodies to protect her from sickness.

In early January, all three got sick…again. This was it. I was done. Clearly my theory about keeping my baby healthy by nursing wasn’t panning out and I was exhausted from trying to fight the darkness and fear. I weaned my baby girl easily and started taking care of my own health. It took a few weeks for the medication to really start working, but just knowing that the process had started helped me immensely!

It’s been a year and a bit now since going on meds. I’ve had my ups and downs, but I’m still so glad that medical intervention is available to me. For just over a year I stayed on the lowest possible dose, but in January that changed as well. It was my oldest daughter’s sixth birthday and I spent most of the day hiding in the basement crying. My husband tried to keep the kids distracted because he knew I didn’t want them to see me this way and I called my wise big sister who spent a great deal of time and energy “talking me down”.

Let’s see, what was my issue that time? I was pretty sure that I was having a heart attack or stroke or both. My kids would have to grow up without a mom and who would know how to raise my newly diagnosed son properly?

This happened on a Sunday – Monday morning the medical clinic opened at 8:30 and at 8:31 I called to book an appointment with my Doctor.

A few days later I blubbered out my story to him and told him that I needed more help. He thoroughly checked me out, assured me that I wasn’t having (and hadn’t had) a heart attack or stroke but that the anxiety was causing the chest pains. We agreed to increase my medication and follow up in a few weeks time.

It’s been a few months now and I’m feeling so much better. The depression and anxiety are still there, but I feel like I control them now, instead of them controlling me.

Have you struggled with depression and/or anxiety? Is this a current struggle for you? Please find someone to talk to. Please know that it’s not because you’re weak or a failure.

God has created people with talents in the medical profession and it is NOT a sign of weak faith to seek help. I would love to hear from you if you are going through or have gone through this valley.

The good thing that has come out of all this is that my relationship with God has been getting stronger. My ability to worship Him is increasing and that has a beautiful impact on every facet of my life. Not every day is perfect, but every day is a gift!

 

Wendy

Navigating the Spectrum

It will be six months tomorrow.

For half of a year, my son has officially been autistic. So much and so little has changed in six months.

I can still so clearly remember the day of the diagnosis. I remember getting back into the van and going out for lunch before heading home. I remember how hard I had to work to hold it together and how shocked I was about how shocked I was.

We picked up a few groceries since we were in the city and I wanted to buy my son a toy, a treat, something. I don’t know why I needed to do this so badly, it wouldn’t change anything. Maybe it was because I felt so helpless as a mother right then and that was all I felt like I could do.

The ride home was quiet. I was so ashamed of myself for having to struggle not to cry. What kind of terrible mother gets so upset about something like this?!?!

He didn’t have a terminal disease. He didn’t have a degenerative condition. It was just autism and it could be so much worse. And wasn’t I expecting this? I knew this diagnosis was coming.

I pulled the papers out of my purse and read them again just to be sure that I heard her correctly.

“….a diagnosis of Autism Spectrum Disorder is appropriate…”

I just couldn’t figure out why I was so upset; all that I knew was that I was.

We pulled into our yard and walked into the house. My dear friend who was watching the girls was kind and sensitive enough not to ask anything. I’m pretty sure that she could read it all over my face anyway. She knew my son better than most people. From day one, she has been his favourite “church aunty”. I asked how the girls behaved and she told me some of the silly things they had done. I thanked her again for her help. She hugged me and left.

The rest of the day went just like any other. I put away the groceries, made supper, the kids had baths and went to bed.

The next day came and we knew it was time to start moving ahead with things. I called Autism Services and set up a home visit. I started looking into some of the equipment that I thought may be helpful for him. Weighted blankets and toys. A pea pod. Maybe even a service dog. My boy is a runner. A highly non-verbal wanderer. He has gotten away on us twice and those have been the most terrifying moments of my life. There are dogs trained to help kids like that.

My husband came home after work, and again the evening went like any other. Supper, play, bedtime.

Now I was finally ready to talk about things. I confessed to him how surprised I was at how hard I was taking this and how guilty that made me feel. We talked about how to go about telling people. Should we tell people? This isn’t the kind of thing you announce on facebook. I had already told my mom the previous day and my friend who had been watching the girls called earlier and we talked about it then.

When I say we didn’t know whether or not we should tell people, it had nothing to do with keeping things secret. We were more concerned with him being seen by others as just a label instead of himself. We decided that as people asked (some of our closer friends knew that we were going through this process) we would tell them and just let the word get around as needed. No sweeping declaration, no vow of silence.

The next few weeks came and went. During this whole time, my son and I had been making weekly trips to the center for his group therapy sessions. I found my greatest comfort in these times. There were two other kids in the session with him; a little boy accompanied by his mother and a little girl accompanied by her grandmother. The other boy had been diagnosed months earlier and the little girl was still waiting for her assessment.

During these session, we caregivers sat in an observation room and were able to visit. I told the ladies that he had been diagnosed and there was just an understanding. No pitying looks or insensitive questions. I admitted to them how I had been feeling and that I was going through a period of mourning.

The grandmother seemed a little taken back by that, but the mother understood. Not mourning that my son had some terrible disease or anything, but mourning for the future that he very likely will never have. When our children are born we have certain expectations (whether we realize it or not). They will graduate high school, be successful in their career, fall in love, marry, have a family of their own, etc.

These are things that my son may never experience. His education I’m less uncertain about. I know that he’s smart. I also know that his educational process will look different that most kids’.

The other mother talked about her own mourning process and how just when she thinks that she’s through it, another wave of sadness often sweeps over her. Strangely, I found comfort in that. In knowing that I’m not just some crazy and selfish mom, and that someone else understood. She provided me with helpful information about who to connect with, funding available, what else to expect as a mom. I’ll always be grateful for her help that day.

I have since come to realize that a large part of my difficulty with getting the diagnosis is that even though we were expecting it, there was always this glimmer that maybe it was something else. Something easily changed so that my boy wouldn’t have a lifetime of struggles. That glimmer is gone now. autism definition

Throughout the past six months, my son has made some great strides. He is more able to ask for things that he wants, or be able to say “no thank you” to things he doesn’t want instead of just reacting with fear or anger.

A month ago I took him to the doctor to be checked. The standard procedure with him has been that I sit him on my lap, hold his forehead with one hand, his chin with the other while the doctor gags him with the tongue depressor to get him to open his mouth so he can check his throat. This time, my boy willingly opened wide and said “aaaaahhhh”. He also happily let the doc check his glands and lungs.

WOW!

I don’t know who was more amazed, the doctor or me. Okay, I thought, if he’s this good with the doctor then maybe he’s ready for the dentist.

Last week I took him in for his first dentist appointment. I explained to the hygienist beforehand that he is autistic and I didn’t know how he would react. We agreed that we’d be more concerned with checking for cavities and if he allowed her to do a cleaning, great. If not we’d try again another time.

I brought him in and he sat happily in the waiting area with no fear or anxiety. Our hygienist approached him and introduced herself. My son looked at her and introduced himself! Then motioned to me and said, “And this is mom.”

What. Just. Happened???

He has NEVER done that before! Every female within earshot “awwwww-ed” and I grinned from ear to ear.

He does that. He has those days when he just amazes me with his progress. He also has days when it feels like we’re going backwards. Those days come less often, but they are hard. Remember when I said I had taken him into the doctor? One of the hardest things about the communication issues that he has is that when he is sick, he can’t tell me. I can see signs like a runny nose, fever, etc.  What I can’t see is an owie tummy, a sore throat or a headache. Those moments shatter my heart!

A few nights ago he woke around midnight, highly agitated. I gave him a hug, but it didn’t help. I tried to sing his favourite song and read a story. Nothing but more agitation. I asked him if he was feeling sick but his response was, “feeling sick”. I asked him if he’d had a bad dream to which he replied, “bad dream”.

The problem with echolalia is that it’s difficult to decipher if he’s telling me what he needs, or just repeating. I tried everything I could think of and fought the urge to just sit down and cry with him. Forty five minutes later I got him a drink of water which he chugged back like he’d been wandering The Sahara. I refilled the newly emptied cup, he took it and marched happily back to bed.

I was relieved that he was settled, but bewildered that he was unable to tell me that he was thirsty because that’s something he has been able to say or sign for quite some time now.

My choices are to let the frustration get me down, or just keep moving forward. Some days sinking into despair looks appealing, but that doesn’t give my boy what he needs, so forward we go.

We continue using his PECS sheets and some sign language. He’s really focused on simple addition and reading so I am riding that wave for as far as he’ll let me. He loves the Leap Frog cartoons, Super Simple Songs on YouTube and music and learns so much from those things.

We live in a wonderful community that embraces him beautifully. His playschool teachers are amazing people who don’t just ignore him, but don’t try to force him to be someone he is not. His daycare workers are great and just let him be himself but don’t let him use his diagnosis to get away with bad behaviour.

My oldest daughter amazes me constantly in her patience with him and her understanding that sometimes he just needs mommy’s attention and that she’ll have to wait. I know that God has big things in store for this girl that He has just filled to the brim with compassion and love. I try to take her on outings one on one as often as I can because I never want her to feel ignored.

We continue to navigate this new territory unsure of what is ahead, but fully confident of Who is in control. Thank you, Lord, that you go with us every step of the way!

 

Wendy

“So I Saw This Thing on Pinterest…”

As far as my husband is concerned, this phrase ranks right up there with, “We need to talk.” or “Do these jeans make my butt look big?”!

Most husbands would just roll their eyes, maybe groan a little wondering what food they’ll be eating out of a mason jar for the next week. My husband, however, would LOVE IT if that was his biggest inconvenience.

Unfortunately for him, he knows that my latest idea will be HIS newest project. I have some talents; baking, writing, quoting movie/TV lines to fit anywhere in a conversation, and I tell some of the driest and lamest jokes around (yes, I am proud of that one)! Working with my hands? Other than the baking and writing… “not so much” Mad About You (see what I did there?).

So because God didn’t gift me with a talent for building or crafts or any of that stuff, He gifted me with my husband. I can SEE the project in my head. I can carefully plan out the steps. I can get all the supplies together and watch tutorial after tutorial…but my hands just can’t do it! Hubby, on the other hand, not only has the talent to build whatever I want, but to translate the vaguest and most poorly thought out concept from my head into an actual THING that looks like the thing it’s supposed to be!

He amazes me time and time again. Not only that he can MAKE what I kinda sorta think I want, but that he can make it better than I even conceptualized it! Not to mention that he actually has the patience to do the harebrained projects that I come up with in the first place!

Two years ago, I asked for some shelving in the basement storage area. I got a full U-Shaped storage area with shelves built specific to the storage containers I have so that nothing has to be stacked on top of anything else, right up to the ceiling. It also included a bar to hang out of season coats for the next time we need them so if winter hit sooner than expected, I wouldn’t have to tear apart the basement hurriedly looking for jackets and ski pants for the kids.

Shortly after that, I asked for a basic stand to put my front load washer and dryer on (I’m way too cheap to pay retail prices for those!) so that the kids would quit pressing the buttons and washing or drying nothing. I got fantastic, strong, steel frames that custom fit my set, had rubber feet so as not to damage my floor, and space to store my laundry baskets on those rare occasions that all the laundry got put away.

rainbow snack
Playschool snack on a rainy day.

Now, there are some Pinterest ideas that I have successfully completed. My life/bills/home school filing system, marshmallow and Fruit Loops rainbow snacks for playschool, many of our suppers originated with a Pinterest search. Those things I can do, but I still wouldn’t
have had the ideas on my own.

IMG_0278
Hand painted growth chart custom made by a very dear friend.

I also have friends who are crazy talented, including the one who made my family this amazing growth chart this summer.  It is admired (and often coveted) by everyone who comes into this house. It not only charts the growth of my children, but
distracts guests from the, uh, lived-in look that is my house most days.

I have a sister who can create the most beautiful art with the photographs she takes.  She also has the ability to host amazing events and make her guests all feel special and unique and loved.

 

My other sister is able to really peer into peoples’ circumstances and see their needs. Then she is the type to “do the work” to meet those needs for people with no thought of the cost to herself. Need a driveway shoveled but feeling under the weather? She has it done before you even think to ask. She also has the gift of being able to talk me down in my more anxious moments, or cheer my up in my depressed moments. No easy task!

My mom bakes and knits amazing things; my dad is the baby whisperer (he has soothed more fussy babies than I can count, including my own).

My oldest daughter can take ANYTHING from around the house and create some type of craft or instrument out of it. I could go on and on and on about the talented people that I know, and I’m sure that you could too. I just love the variety that God has placed in us!

Just like God enabled my husband to be talented where I am not, and vice versa, He brings others into our lives to walk along side of us and help us do what we can’t do on our own. Sometimes that means that our friend creates something beautiful for our home. Maybe a family member helps us develop a talent so that we can not only do things on our own, but also bless others with our talents. We are not created to go through life relying only on ourselves.

Neither are we created to rely solely on others. God wants us to depend on Him! Other people can fill some of our needs some of the time, but only God can “complete” us. People will let us down, whether intentionally or not, but God won’t. He can’t. It’s not who He is.

Our talents and abilities come from God. We are to use them for His glory. To help or encourage those whom he has placed in our lives. To help others see and develop the talents He has placed within them.

And don’t think for one second that you only get one set of abilities and that’s it. Ask anyone who’s known my for the last 15ish years and they have heard me say that teaching is absolutely the worst possible thing I could be asked to do. I loathed it, I was terrible at it and the students suffered. Whether it was Sunday School or anything – it was not a good idea to put me in that job.

Three years ago my daughter started BG Club and I signed on as a helper in her class – crowd control for preschoolers, I can handle that! In the third or fourth week, the teacher had to step down because of a change in her work schedule and I was thrust into the position. I begrudgingly (oh so begrudgingly) endured it for the next three sessions. I took one session off because I had a newborn and thought that was it. I was free!

“Just when I thought I was out…they pull me back in” (you knew that was coming!). But something happened. God changed my heart and gave me a love for these kids and this club and suddenly I was able to teach and teach well.

If He can make me love and be good at something I had detested most of my life, he can develop talents in anybody!

Now I continue to teach BG Club and home school my daughter.

What are your talents? What talents do you want God to develop in you? Who has he placed in your life with abilities to complement yours? More importantly, whose life has he placed you in? And how can you be a blessing to them?

I would love to hear from you!

Stepping Into the Spectrum

It’s the kind of thing you never really stop examining. At least not for me. Not yet.

Should I have eaten more of this food during my pregnancy? Less of that one? Did I forget to take my prenatal vitamin one day? Maybe I was too stressed. Maybe I’m just a bad person and God decided to punish me for it through my child. The questions on this list are endless.

Of course I KNOW that the answer to all of these questions is a resounding “NO”. My head knows that. My heart? Well, that depends on the day.

My son is not a punishment and never has been. He loves to giggle and be tickled and sing and swing in the back yard for hours and hours. Just like most every kid. My son also loves to arrange his vast collection of balls a hundred different ways a hundred times a day. By size, by colour, by softness, by type, in order of importance to him personally. In a straight line, in a circle, in a triangle, in an octagon. Don’t try to take one out or trade two around. He’ll know. Even if he wasn’t in the room, he’ll know instantly.

My son also loves to quote “Max and Ruby”. In fact, he uses it often to communicate with me. He will bring me a blanket and when he’s given up on me trying to figure out what he wants he’ll say “super bunny”. Ooooohhhh, you want a cape! Got it! For those of you who know my little boy personally, if he’s ever asked you to do something like this for him, count yourself special. Not just anybody makes the cut for this kind of intimacy with him. It means he loves you and trusts you to understand him and not get frustrated with him or treat him like he’s stupid. So many do. They don’t mean to (always), but they talk about him like he’s not in the room. He might not join the conversation like you expect him to, but he’s there, and he’s taking it in. He takes in so much more than people give him credit for.

 

 

It’s a warm August day and we are walking to the “check a mail” as my kids call it. We do this most days because it’s close, and sometimes the only excuse we have to leave the house/yard. Flyers, bills, the usual, a letter from the Center. Hmmm. They have been working with my son for almost a year now. They are great! What are they sending me this time. It’s pretty thin so it can’t be a report. I get the kids back into the stroller and tear open the envelop. I don’t have patience to wait until I get home to see what this is.

His assessment has been booked. THE assessment. The one I’ve been waiting for and dreading for the last 4 ½ years. I don’t want him labeled, but the label opens the doors for help, for funding, for equipment. And maybe, just maybe, the label will stop well meaning people from diagnosing him themselves.

I have a month to prepare for this. Not that we have to do anything. There’s no studying or training or practice. But I have to prepare my heart to hear what it’s known all along.

The assessment is broken into 2 appointments. We meet the Pediatrician, the Psychologist and the Psychometric (that was a brand new word for me). The Social Worker, Speech Language Pathologist (SLP) and Occupational Therapist (OT) are already well known to us. They have been working with my boy for a year and he loves them and they love him and for that I love them too!

Today it’s just me and my boy. He’s playing in the corner with some of the toys he’s become familiar with there while I answer questions.

So many questions.

Many of them are the same question just asked in a different way. It’s a little annoying, but I get it. They need to be sure that they’re getting the truth out of me. Not that I would intentionally lie, but I think my mama bear nature is to protect my cub and maybe I have glossed over a few things without even realizing it. I had made up my mind prior to this to be completely honest about everything. I have spent the last month in prayer for God to give me the strength to be honest. It shouldn’t be that hard, but what if they judge me as a mother? What if in my honesty they discover the true cause of his whatever is my faulty parenting? It’s hard to be vulnerable.

For a moment I step outside myself. My mouth is moving. Words are coming out of it. I’m making eye contact and nodding at comments made by our “team”.

I’m not hearing a word.

I’m struck with the fact that my little 4 year old requires a “team” to help him learn how to “do” life. It’s not fair, God. I know we’ve had this discussion a million times, but why does life have to be so hard for someone so small and sweet?

I snap back to reality. We’re moving to the next room. He goes into one room with the Psychometric and I watch through a window. I’m listening and filling out paperwork.

She’s asking him to copy her, but she’s not giving him enough time. No! You have to ask him like this. Just give him one more minute, he’ll get it. I know he will!

This is one of the most agonizing steps in the process! A-ha! That’s why the parent has to stay in another room. I get it now.

This part is done and the Psychometric is now one of my least favourite people. It’s nothing personal, she just made him get frustrated. Put those claws away, mama bear!

More questions, more answers, more structured and observed play.

We’re done. Day one is done.

We load back into the van and head out for lunch. He’s worked hard for that Happy Meal.

 

A week and a half have passed and something springs back to my mind, “if at all possible, we prefer to have both parents present for the final assessment”. It’s an easy text into his boss for my husband to be able to get the day off.

I try to tell my husband what to expect, but I’m not entirely sure myself. I introduce him to the “Team”. The Psychometric isn’t here this time. Good, I haven’t quite forgiven her for doing her job last time. We exchange niceties. Yes, roads were excellent. It is a lovely fall we’re having. Nope, no trouble getting the time off. We’re all friends now – let’s get on with it.

We go to the gym. They let him swing and climb and giggle. When he giggles and looks you straight in the eye he melts your heart! One of the million things I love about this boy is that there is not an insincere bone in his body!

The OT knows his favourite songs and games and he is having a blast. The SLP has this way of getting him excited about language and she pushes him to work hard, but he has so much fun that it doesn’t feel like work.

Now it’s time to go play with the Psychologist again. We try some pretend play but he really doesn’t care that the “baby is sleepy”. Throw a birthday party for the doll? Ok, now she’s speaking his language! After a small snack break he perks back up and now it’s time to see the Pediatrician. He’s being about as cooperative as he ever is with doctors, but she is patient and kind so he cuts her a little slack.

“Ok, all done. Why don’t you take him to whichever waiting room is his favourite to go play in while we all confer.” says our Social Worker. That’s easy – to the slides!

I watch him play while trying to hold my heart together. I know that this is the last time he’ll be playing as just himself. Any minute they’ll come get us and from that moment on he’ll be The Autistic Boy, or whatever diagnosis they give him. I’m trying to pray silently, but the words aren’t coming. Romans 8:26 & 27 comes to mind, In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”. Thank you, God, for knowing what I need even when I don’t!

My husband and I don’t say a whole lot. Not that we’re upset with each other or anything, but there doesn’t seem to be words for this. This is uncharted territory for both of us. What is the waiting room etiquette when waiting for your life to change?

I know that nothing will really change. We’ll still keep doing what we’re doing and our boy will still be who he is; but it still feels like we’re about to walk through a door that we can’t go back through again. I’m not trying to be dismal, just realistic. We’re both quite certain that Autism will be the diagnosis. In fact, we’d be more surprised if they told us that it wasn’t.

“Hi buddy,” the Social Worker says to my son, “having fun?” He turns to us, “Alright, we can head back to my office now.”

Part of me wants to freeze this moment before he becomes a label and just always let him be himself, part of me wants to just get this over and done with and start moving forward. My body is just on autopilot anyway, following along.

My husband and I take our seats on the comfy black leather loveseat and right then it hits me – this is why they want both parents present! Partially to get a fuller picture of our son, but mostly because they know that we need each other for support right now.

There are words coming out of mouths and we nod and “uh-huh” appropriately. The Pediatrician leans forward slightly. “Based on what we’ve observed during this process, what the OT and SLP have observed during their work with your son, and the information you two have provided us with, it is my professional opinion that a diagnoses of Autism Spectrum Disorder is appropriate.”

I think the only words I can mutter are, “oh, okay”. We have an opportunity now to ask questions. We can’t think of any right now. I’m far more surprised than I expected to be.

Everyone files out of the room except the Social Worker. We start talking about where to go from here. We discuss programs available to our son, what specialists are available to him and us. He assures us that we do not have to walk through this alone. He keeps handing us papers and we keep saying “thank you”.

We are silent as we walk out to the van. It’s now time to start our life as an Autism family.

My Unexpected Journey

It was a typical school assignment for a typical class.  It went something like this:

Dear future me,

Hi, how are you?  I know you’re good because you have it all figured out.  You’ll be 26 years old when you get this.  You’ll be married and have 2 or 3 kids by now.  You’ll be a stay-at-home mom, but have your accounting degree.  Your husband will be awesome.  Probably athletic.

It went on like this for probably a good full page or 2.  I don’t remember exactly because the teacher who vowed to send us our letters in 10 years never did.  My 20th high school reunion is coming up this year…I’m not holding my breath.

This was the life I expected.  The life I planned.  I saw absolutely NO reason this wouldn’t come to pass.

Where did all MY plans get me?  Well, for the record, I aced all of my high school accounting courses!  I enrolled in a local-ish college Business Administration program with a major in Accounting.  After year 1, the major switched to Marketing (I loved and excelled in these classes).  I always was a creative type and although the basic bookkeeping end of accounting was fun, I needed to let my creative juices flow freely.

Fast forward through a few years selling insurance, then being an office manager/bookkeeper (see, I did get to use some of my education) for 4 years.  Still no sporty husband, still no 2 or 3 kids.

The year I was 25, I had it all (less the hubby and kids).  I really did enjoy my job, and I was good at it.  I had a great group of friends, owned my own place (roommate free!) and lived in the same town as all my immediate family.  I was happy.

Then, God starting doing something in me.  It was time to move on.  Now I have never been afraid of change – if anything, I crave it – but why would I want to give up a perfectly comfortable life?

Over the next year, the feeling got stronger and stronger but God just kept telling me, “Not yet”.  Then, in September of 2004, within a 2 week span I had a new job, trained my replacement at the old job, sold my home and secured an apartment in a new town.

Three years went by there.  Career wise, things were good.  Promotions, travel for work, a dear friend nearby.  Still no husband or kids.  The memory of that letter haunted me from time to time.  Most of my friends were married, and had or were having kids.  I had nieces and nephews that I loved dearly but I longed for my own family.

Late 2006 I did that thing I was never going to do; I set up an EHarmony profile.  It took some time, but eventually I connected with this farm boy (who would rather play with a tractor than a hockey stick) from a tiny Prairie town.  We talked, we met, we dated and in 2008 we married.  I was 30 years old by now.  Things were a little behind schedule, but coming along nicely.

Two years later we welcomed our first child.  A sweet baby girl who filled me with so much love at times, and so much frustration at others.  She was borderline colicky and my husband worked at a job that only allowed him to be home on weekends.  At this point I was 1500KM away from my family and didn’t really know anyone well enough to reach out to here.

My Princess grew and learned…and talked and talked and talked.  By 11 months she was saying short sentences and being an all around genius (at least in my eyes).

Sixteen months after becoming a mommy for the first time, we did it again.  A boy this time.  Other than some feeding issues early on, he was one of the most laid back little kids I’d ever seen.  The exception was hunger.  I’m good, I’m good, I’m hungry NOW!!!

My little champ couldn’t really care less about playing peek-a-boo, or reading countless stories like his sister.  Just keep him fed and dry, let him watch the front load washer do a load or two and life was good.  He was a much earlier walker than his sister, but not so much with the talking.

We thought we were done.  We sold most of the baby gear and I tried to convince my heart that I was okay with these two dears.  Hubby got a job with a much, MUCH better schedule, benefits and better pay.  No more being sent out.  No more being the married single mom anymore.

Through the early years, we had our issues.  Big issues.  With God’s help and a handful of close, trusted and Godly friends, we overcame these issues and in January of 2013 decided we wanted just one more baby.  This time it didn’t happen as easily as the first two.  While trying no to worry about not concieving, I was also trying to deny the signs I was seeing in my son.  He was two years old and still not overly concerned with talking or interacting.  He’s just a little behind.  He just has his own interests.  Who cares if all he wants to do is recite the alphabet and line up his toys over and over.

Around the same time that we started seeing a local Speech Pathologist, I found out I was finally pregnant!  The emotions that accompanied me during my pregnancy were heightened as I struggled to come to terms with the fact that it was more than a little delay with my son.  We were referred to a center that deals with special needs children in a nearby city and we have put on many miles going back and forth to appointments.  Each and every one worthwhile.

Our third child, another girl, was born a little before our son turned 3.  The “A” word was getting brought up more and more to me.  I pleaded with God on more than one occasion for that not to be his future.  Please don’t punish our sweet, innocent boy for things that aren’t his fault.

The birth of our daughter was a blessing, but for me brought a level of postpartum depression and anxiety I was not prepared for.  I sought professional counselling, I tried every trick in the book.  I called out to God more times than I could count to take this crippling anxiety from me so that I could be the wife and mother my family needed me to be.  I fought and fought and that winter was the hardest of my life.  My kids were constantly sick.  I could barely function and if one more person offered well-meaning but unsolicited advice I was going to snap.  At 10 months old, my daughter was still being nursed.  Then she got sick…again.  I was done.  I weaned her and went on anti-anxiety meds.  I knew I needed medication but was holding off because I hoped to nurse for a full year.  To be clear, this was what I felt was right for me.  Other moms who wean sooner or use nursing friendly meds – I applaud you for doing what was right for you!

I started to feel human again, but depression and anxiety weren’t supposed to be part of my journey.  I did NOT write those things in The Letter!

Our son was getting older and the “delays” were becoming more and more obvious and six months ago it became official.  He is on the Autism Spectrum.  My boy is Autistic.  My boy is going to have to fight for every little victory in his life.  Things that my girls take for granted, having a conversation, telling me that they don’t feel good, or what they want to play (or don’t want to), these are things my little champ is going to have to work at.  And work hard!  And he does!  He’s still my happy little laid back buddy.  He’s a mama’s boy which is fine because my husband has two daddies girls!

More about the diagnoses process another time.

Along with the diagnoses came another BIG decision.  One that I have wrestled with since my first pregnancy – schooling.  I had felt called to home school for a long time, but it’s intimidating, it’s unpopular in most circles.  It’s time-consuming. It’s the right thing to do for my family.  My boy is smart!  Crazy smart.  Like most autistic kids, my son possesses certain skills way beyond his peer group and our local school, I feel, does not have a program that will benefit him.  I refuse to let my boy fall through cracks!  So right around the time Autism became part of our family identity, so did Home schooling.  Another detail that was not in The Letter!

And did I mention that I also work part-time.  At one point this winter it was four simultaneous part-time jobs.  That also wasn’t in The Letter.  There was nothing in there about being a family on a budget.

So Future Me and Real Me don’t quite have our stories straight.  Remember “You’ll be married and have 2 or 3 kids by now.  You’ll be a stay-at-home mom, but have your accounting degree.  Your husband will be awesome.  Probably athletic.”?  Yeah, real life reads more like:

You have 3 kids, one of them is Autistic and will require a level of parenting you never knew you were capable of.  Your husband is great, but he’s an imperfect creation just like you (gasp!).  Your girls are strong-willed and will challenge you in new ways in everyday.  You will not be one of those moms who has coffee with her friends while the kids are in school because you’ll be in school with them.  You’ll be working too.  Even though good moms don’t do that (I was an idiot back then).

But here’s where God’s plans prove SO much better than mine.  His letter to me would read something like this:

You will learn patience because what you want you’ll have to wait for, with no guarantee that you’ll ever get it.  What you think you want won’t take you where I want you to be.  That husband who isn’t quite who you expected him to be, he’s the best match for you because you two will compliment each other.  That son that some people call “disabled”, I gave him abilities that other people could only dream of.  And he’s going to give you the ability to become the mom that I made you to be.  He’s going to make you patient and compassionate and fierce.  Those girls with the determination and stubbornness, those girls who are just. like. you? Teach them to use their determination well.  Teach them to use those traits for My glory and not for their own devices.  So here’s the part of your Unexpected Journey that I have revealed to you this far.  Just wait to see what’s next!

I’m waiting!

Wendy