Autism and Late Diagnosis

This is a particularly difficult post to write.  Many children exhibit obvious behavioral patterns that point to a diagnosis of Autism.  Some of these behaviors include stimming, hyperfocus on objects or subjects, and severe language delays including nonverbal problems.  Other children, like our daughter, do not display these behaviors and still face huge challenges in social interaction and learning. Sometimes a diagnosis comes late, and certain behaviors have become rigid structures by which a child has learned to survive challenging situations

In our case, we did not receive the Autism Spectrum Diagnosis until our daughter was 10 years old and in the 5th grade, despite the fact that my husband, Greg, a licensed professional counselor, had been saying for at least 2 years that something wasn’t right and that ADHD didn’t quite fit her.  The benefits of prescribed ADHD medication never lasted more than 90 days without requiring a change (usually an increase in dosage), and some behaviors were actually magnified because of the medication.

When we first requested that Curly be assessed for ADHD, our pediatrician’s office at the time told us that he did not believe in ADHD because it was a discipline/behavioral issue.  This did NOT sit well with my husband, who was clinically trained to diagnose and counsel for ADHD issues, and it did not sit well with me either!

We changed pediatricians.

We had Curly assessed at school, because as her mom, I began to see patterns emerging with every subsequent school year.  She would start out on a high note – all A’s, loving school, making friends, etc., – and then around the 12 week mark, we would see a dramatic drop in her grades, in her motivation, in her ability to stay organized with her assignments, and with her ability to transition from school to home.

She would have screaming  meltdowns when she would come home from school – which at first appeared to have no reason to me – and which shot my stress level right up there around my-head-is-going-to-explode.  She began being more aggressive with her sister and brother, began destroying small items that belonged to other people, and became argumentative over ev.ery.thing.  All. The. Time.  She could scream and throw a fit for a good hour without stopping, and then it would shut off and she would be tired and sometimes could not even remember what she was so upset about.

If you knew our girl when she was young – 3 or 4 or 5 – you probably cannot imagine her being like this.

I was afraid that her ADHD meds were making her worse.  There were some meds that caused serious side effects that were scary, and we would have to stop that med and try to find another.  We purposed to avoid all of the amphetamine-based ADHD medications due to family history of addiction and because we just didn’t want to go there.  I always felt that I was screwing her up because I couldn’t show more Grace and less anxiety.  That maybe I was not disciplining her effectively, and that was the cause of these problems.

But finally, during the 5th grade, after Curly had seen her own counselor for a few months – we got a referral to a psychologist.  Rather than her behaviors improving with counseling and medication, they were growing worse.  And she was getting bigger and harder to manage.  The psychologist interviewed us and Curly several times.  He performed a QEEG which reviews brain wave activity.  We even had a medical EEG done because there was a concern about possible Absence Seizure (more like a “space out” than a convulsive seizure).  She could NOT tolerate the EEG in the hospital and we had to leave before it was completed because she didn’t like the sensors, the flashing lights, or the sounds of the  machine.

When the psychologist reviewed the QEEG, he showed us that Curly’s brain waves looked NOTHING like an ADHD child.  WHAT!?!  She showed NO typical patterns for ADHD, and other than disorganization and trouble staying on task, he began to tell us that he felt like ADHD was NOT the culprit.  That’s when my husband suggested we consider Autism Spectrum Disorder.

This opened a whole new conversation and realm of questionnaires, assessments, and feedback from teachers.  We reviewed her developmental history and things started to stand out that ALSO fit into the ASD diagnosis (one primary one being constipation…)  While teachers at school could not believe we were even looking at ASD (she is SO WELL BEHAVED at school), the more we worked with the psychologist, the more the pieces began to fit together.  She came off her ADHD meds, which caused some interesting situations, but the more he worked with her and began using biofeedback, the more I saw some of that sunshine come back in our girl.

A puzzle piece is the sort of symbol for Autism Awareness, and I felt like we had dumped out a box of puzzle pieces and were trying to put it together – only there were no corners – it was a round puzzle.  And she was my daughter.

Getting the Autism diagnosis was only the first step.  We have had a long way to come and we are still working on putting support in place for her – and for our family – and for awhile I have felt like we were “behind the 8 ball” so to speak.

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Sometimes Telling the Stories is Hard

When I began blogging many years ago, the basis of my blog was just to update friends and family about the growth of my daughter, Curly.  I got married in my 30s and had her in my mid-30’s so it was a big deal – and not just for me.  Being able to communicate the life experiences as they came while working full-time and taking CARE of said baby was pretty challenging for me – especially since I was taking online college courses at the time.  I heard about blogging through work and decided to jump in and voila!  My writing had an outlet and my stories had a forum.  As Curly has grown, and Georgie & Little Man came along, there was more to write about.  But sometimes telling stories is hard.

As I wrote more posts about my family – about my journey as a wife and mom – and the huge challenges that came along (because LIFE!)  I had to learn how to balance privacy and respect with authenticity and openness.  I tend to lean toward TOO much information, and had to learn how to cut back on details and soften some sharp points.  I also found that people in my life – family members and friends – that I interact with on a daily basis, could become offended by certain revelations and references.

I have had some dark moments.  Days where being a mom was the LAST thing I wanted to be.  It has been exquisitely painful and I have had to process a lot of things about myself, my expectations, and my reality.  And I continue to do so.

I stopped blogging regularly – for quite some time – because I had shared some difficulties my family was experiencing and it stirred up some “stuff” that affected people in my life who have nothing to do with my blog.  So I tried to stop blogging about the personal stuff.  And then I just stopped blogging.  I even got to the point that I wasn’t even journaling in a notebook for fear that someone could stumble upon it “one day” and discover things that might be more fearsome than they could handle.  (and little by little, my spirit started to die in the process…)

What I learned is that NOT sharing the stories in some way is missing out on opportunities to connect with people who understand the struggle and who need encouragement too!!!

I have stories to share about the Autism Spectrum/ADHD, marriage, parenting, spiritual stuff, and family dynamics.  Can I just say that the ADHD/ASD alone has turned my world upside down!?!  It has been a long process and it’s shaken me and changed a lot of things for our family.  I am having to consider things for one child that I don’t ever have to consider for the other two.  The fact that our oldest child struggles with her ASD/ADHD is a big part of why I want to both share and respect her as I write about life.  Being married to a counselor has some great benefits, but being married to a counselor also means that privacy is a BIG issue and I need to be able to balance what I share with how I share it.

So, I will be writing more about our life – sharing the stories – and hopefully sharing not just the struggles (because THEY. ARE. REAL.) but also the victories.  I don’t  have everything figured out.  I don’t have all the answers for my own problems, let alone anyone else’s.  But I do know that companionship can bring great comfort.  Compassion can lead to greater understanding about life’s journey, and God’s work, and crazy circumstances.  And sometimes comic relief is something we ALL need!!!  I want to be able to share the Grace & Glory of the life God has given me most of all…

Are you a Tell-It-All kind of person, or Keep-It-To-Yourself kind of person?  How do you feel when someone shares what you consider to be “too much” information?  How do you feel when someone doesn’t share enough and you leave with more questions than answers?  

Essential Oils for Anxiety and Stress

There are essential oils that can make a really bad day much better.  Essential oils for anxiety and stress have a huge place in my collection of oils.  Between Anxiety, ADHD, and Autism Spectrum Disorder in our family, we have a lot of different symptoms that find some relief with use of essential oils.  Sometimes significant relief!

I have a friend who finds that many of the oils that work well for our family – do NOT work for her family with the same diagnoses or symptoms.  This is why a DISCLAIMER is necessary (see the end of my post) because different people react to different oils in very different ways!

Some of these oils are listed in my Essential Oils for Sleep post, but depending on what issues you want to assist, there may be other oils listed which you might find helpful for your use.

Vetiver – attention, focus, racing thoughts

Cedarwood – insomnia, grounding and calming

Lavender – soothing, relaxing, and great in blends

Frankincense – this is one of my GO TO oils for so many things, I had to include it here.  It calms my agitated daughter when nothing else will.  It balances me when I’m feeling moody.  It has been used for centuries in meditation and spiritual practice.  And frankly, it smells delightful… (pun intended)

Ylang ylang – mmmm such a floral wonder.  I usually only add 1 or 2 drops to a whole rollerball because it has such a powerful scent.  Reminds me of the beautiful flower leis my parents brought me back from Hawaii…

Bergamot – a lovely oil with a hint of lemony goodness.  It is the from the same fruit used to add flavor to Earl Grey tea, and it has a softer smell than lemon itself.  This is a photosensitive oil, so you should not go outside within 30 minutes of topical application.

doTerra Balance – this is a preblended mix of oils by doTerra.  Because we don’t know the specific amounts of each oil used in the blend, diluting safely can be tricky.  I tend to go the “less is more” route where my kids are concerned, especially, but I have a rollerball of this in my little bag of oils at ALL times.  It has a very lovely scent – one of my favorites!

doTerra Serenity – this is an oil blend that my friend Shelly gave me to use during my niece’s funeral and the family time surrounding that week.  It has a softly sweet smell and I have used it as perfume, and well diluted as a face serum.  It absolutely helps me settle and RELAX so much better than say, lavender alone.  I will open a bottle of this in the car when the kids are super cranky and put it on myself and the airflow in the ar distributes it to everyone!

Remember that different people can react to different oils in different ways.  While lavender alone can help one of my kids settle almost immediately, a blend of cedarwood-lavender-and-frankincense works better for another one of my kids, and doTerra’s Balance is an oil that helps my third whenever she is too tightly wound.

Diluted topical application is NOT the only use for essential oils.  Diffusing essential oils provides an aromatherapeutic benefit that may be different from topical application.  We have found that diffusing dT Balance for 30 minutes in our family room helps everybody feel more grounded and, well, balanced!

Do you use essential oils for stress relief?  What’s your favorite?  Which oil do you think you would try first?

Essential Oils For When You Can’t Sleep

One of my biggest problems since having kids is regulating my sleep.  Between my all-night sleeper, my never-at-night-sleeper, and the-child-who-won’t-leave-our-bed sleeper – I have not had very many good nights of rest for many years.

As our kids have grown, their sleep patterns have almost flipped.  One of our kids is on medication to help her sleep.  Otherwise, she will be up all night, waking me up because she is bored. Or scared. Or hungry.

We have sleep walkers and sleep talkers.  We have bed wetters and middle of the night eaters.  And there are the occasional night terrors.

Yep – it has been exhausting.

When I discovered that lavender essential oil has a calming and sedative effect, I was happy.  I did notice that it helped calm me down when I used it for my nasty bout of poison ivy.  I also noticed it had a calming effect on my kids.

Lavender sachets – filled with dried lavender buds and leaves – have been used for centuries.  So the idea that the essential oil might be used for the same benefits was not completely out of the realm of the imagination..

Indeed, lavender is often recommended to help calm and settle people, especially at bedtime.  But I have read many comments by people who have said it has the OPPOSITE effect on them.  So, yeah – that is also not out of the realm of possibility.

I noticed after using lavender over a period of months that it did not seem to have the same effect of helping my kids or I fall asleep faster, so I started looking for some other options and found a few oils that were new to me.  (I was also looking for oils to help with ADHD symptoms in my kids, and funnily enough, these were the same oils to help settle for bedtime)

So here are a few oils I have found to be beneficial for helping settle me (or my little rascals) to sleep:

  • Cedarwood – because of it’s woody scent, this is a great oil to mix with other scents to make it more kid-friendly.  It blends especially well with sweet orange and lavender diluted in a rollerball!
  • Vetiver – research suggests this oil particularly works for ADHD, and is especially good for “racing thoughts” so if anxiety is playing a part in keeping you awake, this might be an oil for you.  I add this to every one of my sleep blends.
  • Ylang ylang – this smells just like I imagine a tropical flower to smell!  It can easily overpower the scents of other oils, so be sure to sniff gently and remember that less is more!

You can read more about essential oils for sleep at the following links:

8 Essential Oils for Sleep – by The Prairie Homestead

Essential Oils for Sleep – by Lea at Using EOs Safely

Sleep Tips – by Mommypotamus (not just about EOs)

One of the important things to remember about essential oils is that The Nose Knows!  There are some scents that may be so offensive to your nose that you cannot use them, regardless of their reported benefits.  If you apply an oil to help you sleep and then cannot sleep because it is an odor you can’t stand – you might need to make some adjustments to using it.  Vetiver was an oil I really had to get used to, and I found that blending it with other oils really made it more tolerable, and then I could reap the benefits without gagging over the smell…

Above all – if you don’t have a rollerball and aren’t sure about applying any essential oils to your body, get yourself a cotton ball – a good one, not one of those fakey synthetic cosmetic balls – and apply 1-2 drops of your chosen oils to the cotton ball.  Allow it to dry for a little bit and then seal it inside a plastic baggie. You can use it as a mini-inhaler for several days and refresh it every couple of weeks.

NOTE: some essential oils can melt plastic, so allow the oil to dry somewhat on the cotton ball before sealing it in a plastic bag…

Would you consider using essential oils to help you sleep?  Have you ever tried any essential oils for sleep?  Which oils worked for you?

 

Parenting an Out of the Box Child – Part 3

{If you are just joining, click the links over to Part 1 and Part 2 of this series to catch up!}

Can I tell you the MOST challenging part of parenting my Out of the Box Child(ren)?  it isn’t determining the root cause for each diagnosis, whether or not to use medication in our toolbox, or how diet and environment factor into the ever-changing behaviors of my children.

It’s Grace.

It’s knowing how and when to impart consequence and when to lavish on Grace.

Much of the struggle with #1 Girl is Impulsivity.  I have to say that the impulsivity often leads to sinful choices – and balancing my response as a parent with Grace – while NOT avoiding the sinful aspect – is really my biggest parenting challenge.

It is both heart-wrenching and frustrating.

There are the critics who espouse MORE discipline.  There are critics who denounce medication, which really only restrains ADHD to a dull roar, but allows her to function well at school.  I am required to spend extra time reviewing homework and school work and answering phone calls & texts about her work (or lack thereof), AND am supposed to have extra energy for the daily attitude and shifts in energy and focus and effort – AND be gracious and loving and nurturing, while still maintaining a home environment that displays Jesus Christ.  And teach her responsibility and consequences.  And pour out grace and love.

How?  How do I do that?  So many days, I am At. A. Loss.  I just don’t know.  It isn’t about loving my child.  It isn’t about wanting what’s best for her.

It’s resigning myself to whatever it is that GOD has for her.

And sometimes it means I lay down on the altar for sacrifice.  And sometimes, I just don’t want to.  I want to be able to go into our bathroom, play some soft music, run a hot bubble bath, sip a large glass of iced raspberry tea and read an epic novel without interruption or fear of what might happen if I relax for even two seconds.

2015-04-23 06.32.40The same child who sweetly prepared a breakfast of waffles with chocolate chips & strawberries and a cup of coffee to surprise me – is the same child who finished off the rest of the bag of chocolate chips later that same night in secret.  If I had bet money it was going to happen, I would be rich.  As soon as I saw my breakfast plate, I knew what was coming and hated myself for being discouraged about the likely outcome instead of enjoying the sweet moment…

Parenting an Out-of-the-Box Child has broken me in so many ways.  

And that is why I am writing this.  Not because I have figured out HOW to navigate this parenting road.  But because it’s part of who I am and where God has put me, and I need to be real about it as I seek His Grace daily.  Or hourly.  Or minutely.  You know what I mean.

Maybe someone reading can relate to this.  Maybe someone reading can share their lessons learned through this.  Maybe you feel like you can’t take another minute of this and needs someone to walk the path with them.  No one child or parent is like another – but our journeys may take us down the same road and we can encourage one another and lift each other up.

Because as often as I seek to live out grace to my children, I am bathed in Grace by my Father.  Some days, I wish I could just put her out in front of me into His fountain of grace and let it pour over her.  I don’t always cooperate and am not always fit for His use as an instrument of Grace.

What I am learning the most in all of this, is that I am DESPERATE for His Grace more than for anything else.  And if I can let Him use me, it’s what I hope she learns from my life – that SHE needs His Grace every day too!