30 M0NTHS ON DRUGS AND COUNTING

I received the first official comment for my blog.  This means a comment not from a friend or family member with the polite “good job”.   Instead a stranger somehow happened upon one of my blogs – in this case the one titled “The Gateway Drug” (see http://sensingseamus.com/2011/02/07/the-gateway-drug/).  She simply asked me “what happened”.  How dare I leave my readership of at least 1 solid fan hanging?

To recap:  When I wrote that post, my husband and I were  grappling with the prospect of giving our son his first dosage of psychotropic drugs.  That was Feb 7, 2011 and he remains on medication.  All in all it was the right decision but not the only one of serious import that we have had to make during this time.

Since then we have also had to find a new school that could educate our son appropriately, and use up a good chunk of inheritance money doing so as legal fees and educational consultants cost dearly.  We have gone through a myriad of professionals – psychologists, primary care physicians, occupational therapists, and speech pathologists.  Most have been wonderful, but all have required much work to get them up to speed on Seamus.  We have had to monitor progress or lack thereof and cut them off when we hit a wall – monetary and or emotional.  And, we have had to pick up the pieces of a crushed child when that professional changes jobs, dies, or when Seamus just ages out of that particular person’s expertise.  (See my post “Goodbye Dr. Chips.” http://sensingseamus.com/2013/04/22/goodbye-dr-chips/)

The medication itself – on top of all of this – has required constant tweaking and making sure that he actually consumes those little morsels every day.  At the beginning, certain dosages caused Seamus to be over emotional – crying at the slightest thing.  So we had to lower the Intuniv dosage and increase the Concerta.  But wait Concerta over 27 mg causes him constipation.  This defied logic, as constipation is not a known side effect.  (Note to self to write a journal article for the Lancet on this medical breakthrough!)  At one point he was acting great at the start of school but by 1pm was flopping all over the place and acting in his most unregulated self.  So, that meant, drugs in school.  The nurse would visit him and dispense the magic pill daily to carry him to at least 3pm.

During all of this, Seamus’ weight has been an issue. He started looking literally skeletal thanks to Concerta and its appetite suppression.  Whole milk and carnation instant breakfast drink were the remedies we were given.  So if he wants extra ice cream should I say yes?

Our developmental pediatrician doctor ended his practice and so we are now with a psychiatrist who is managing the meds.  Now my little guy takes 3 pills in the morning.  Are they working? Depends on the day.  Depends on the other influences around him.  Depends on so many things I can’t track, monitor, or predict.

I can say that Seamus now has more positive days then negative although today he cursed out his teacher and made fun of a classmate.  Such seepages occur and continue to highlight that this is – no matter how many drugs or different dosages or at what time of day they are administered – a boy with severe ADHD and sensory processing disorder.  The world remains a hard place for him to accommodate himself to and no pill will make it perfect.  At best, we hope that the pill makes more days then not easier.  That is the hook for us and why we keep at it.

I love him unconditionally and wish I had the secret pill to make it all go away  – his unexplained anger, his need to hurt himself, and the self-loathing he has after a bad episode.

We will keep with the meds, plus the right school, and the litany of professionals who thankfully dedicated themselves to helping kids like mine.  He and we still need help despite 32 months years on drugs.

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German Beach Holiday – Start Looking

 

The exposed sea floor.

The exposed sea floor – Watt – in Wyk. 

When you think about Germany you don’t think beach vacation.  A Ross and Rachel quote from Season 1 of Friends is oddly fitting to encourage a re-appraisal.  Rachel tells Ross she “didn’t look at him that way”, to which Ross responds, “well start looking.”   The same goes with German beaches– “well start looking” or you may miss out on something wonderful.

This vacation, or as us pseudo sophisticates call it – our holiday – has taken my family to the town of Wyk on the island of Föhr (best phonetic translation is a drawn out FUURR) in the North Sea of Germany.  Not an easy place to get to, Föhr is only accessible by ferry with the closest major airport 3 hours away in Hamburg, or Copenhagen in the other direction.  Regardless, the port town of Dagebüll is your entry point to a string of islands that dot the North Sea and your launching pad for a 45-minute ferry ride to the Friesen village of Wyk on the island of Föhr, known as Wyk auf Föhr.

As an American, a beach vacation conjures up images of hot sand, inevitable sunburns, and crashing waves.  But here you are forced to forgo your bias on what makes for a good beach holiday for here is the land of sweater weather, unused tubes of SPF lotion, and water that frankly isn’t there half the time.

While the North Sea is the vista all seek upon arriving, it can be an arresting sight to the unindoctrinated.  On my first visit years ago, after arriving late at night and waking the next morning, I greedily went to the balcony for my view of the sea only to find miles and miles of wet dirt.  I quickly learned that the tide is unique and goes out for miles leaving behind the moist sea floor which the Germans use for Wattwandern – literally – sea hiking.   The exposed sea floor, or, Wattenmeer, is unique in the world and is protected as a UNESCO world heritage site.

Eventually the tide comes in and provides for great water play for young and old.  It is shallow enough for little ones to safely flop around in, and for the real swimmers, there is endless sea to enjoy.  While the water temperature is no rival to Key West, it is not polar bear water either.   Arguably the water temperature is more appealing that the chilled Atlantic waters I have experienced on Cape Cod.  (Dare I say.)

Resting on the white sand are Strandkörbe (beach chairs), built for two, where beachgoers wile their day away.  These clunky contraptions that are must haves for all Germans, protect you from the windy days at the beach that are frequent, from the sun when it does shine down powerfully. They are kept under lock and key and outfitted with a stockade fence so you can keep all the kids toys, towels, boogie boards and other beach accouterments.   Not only does this reduce the parental schlep of stuff to and from the beach on a daily basis, but the Strandkorb is much safer when you consider the number of American beach umbrellas that blow away on a hourly basis and nearly impale people.

The island has its own microclimate, or Reizklima, and the minerals from the open sea floor have medicinal qualities.  Thanks to their health care system, Germans – especially children – with severe lung disease and respiratory conditions are  sent here by their doctors to clinics on Föhr to help remedy their condition.

Traditional regional influences are still strong on the island.  The ethnic group, North Friesens, dominate the cultural mileu including a German dialect that is only spoken here and is unintellible to even Hochdeutsch visitors. Typical for the larger region, people greet each other with a hearty “Moin Moin”, literally “Morning Morning” all day long.  Many houses date from the 1700s and maintain thatched roofs and as my husband proudly pointed out do not require gutters.  This strikes a nerve in us both as we think of the money we recently spent repairing our gutters back home.

His family has only stayed in one of the handful of apartments that are directly on the beach and catty corner to a small airport landing strip.  Those who have earned their pilot wings at the airport are memorialized with their ties cut in half mounted on the wall on graduation day.  Dr. Johansen’s tie is still proudly displayed.

The best thing though about Wyk is how my German born and naturalized American husband melts into the environment.  His exhale is deepest here.  No humidity, no blistering heat, and of course no work.  But more than that.  Wyk is the scene of family vacations since his boyhood when his uncle was the full time island doctor and his dad was his substitute during his time off.  He has absorbed this atmosphere his entire life, and it – the world of Wyk auf Föhr – is immediately available to him.  The translation is instantaneous.  For me, I go searching for a few days, enjoying what I can understand and growing to appreciate that which remains unfamiliar such as the fascination with vacationing somewhere where the water is gone half the time.

But it doesn’t take but a day or two to delight in the fresh brotchen available just outside our apartment each morning, or the lessening of the bags under my and my husband’s eyes from great seaside sleeps, or not having to run after the kids with bug spray and sun screen.  If you heed Ross’ advice and “start looking” it hopefully won’t take you 10 seasons to find that you love Föhr.

* The One Where Rachel Finds Out.

http://uncutfriendsepisodes.tripod.com/season1/124uncut.htm

 

 

 

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Goodbye Dr. Chips

Seamus had a great relationship for two years with his school psychologist Dr. Chips.  There was nothing that Dr. Chips didn’t help him deal with – fights on the playground, strategies to stay calm in the classroom, navigating angry feelings.  Tuesdays and Thursdays were their special days to meet and work out issues over Beyblades, Legos and Star Wars characters.

But now, he is gone.  Six weeks of preparing Seamus didn’t matter.  The memory book they prepared together is a cruel leave behind.  To Seamus, Dr. Chips vanished.  He lost an ally in this harsh world and he is in mourning.  

What does his mourning look like? There have been tears and lots of them.  But the real mourning is seen in his total deregulation and inability to “deal with” life as we know it.  He picks a fight at hockey and gets thrown out of the game.  He yells and screams at Little League, throwing his helmet after being called out.  He threatens to jump off the roof of a building and moves close enough to the edge to look like he may be for real.  

That’s how sensory kids cope. Sure he’s learned deep breathing, he knows “how is your engine running”, we have emotion charts. But any reminders to use his calming strategies are reminders of the loss of Dr. Chips who taught them to him.  Change is the enemy. 

Odds are in our favor that this too shall pass.  But Seamus is 8 now and I can’t prevent change from happening again in his life. And it’s hard to discern if he making progress in dealing with change.  Can we chart any progress from the last episode a few months ago?  For this one, I’ve got 10 self-inflicted punches to the head, two nights of running away from home, and one full speed run with fists drawn to pound on his dad.   

This all serves as a brutal reminder of how tenuous some of Seamus’ gains are and how his reactions remain – even if infrequent – intense, scary and deeply troubling.   

But someday again Seamus will be on the receiving end of change and he may for a miraculous moment stop to take a deep breath and that may make all the difference.  Until then, I just need to keep deep breathing.   

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3 Weeks on Drugs

It has been three weeks since we started my little boy on medication for his ADHD.  Why does that sounds like the opening of confession?  Forgive me father for I have sinned, I have been feeding my son ADHD medicine telling him it is vitamins. 

I don’t know if it is working or not and will have to report on that when I know more but for the time being I shall go back into my mind to dig up a memory of Seamus as a baby when all this fun started. 

When Seamus was born, he was 9 lbs 4.6 oz.  I am a small person so that was very big for me.  And he was delivered vaginally thank you very much.  I was preeclamptic with him like I was with my first child.  That meant bed rest for me 3 weeks prior to delivery. 

You know, the thing about Seamus in utero was that I never felt him move.  Never once.  I mentioned that to the doctors but they said they heard his heart and saw what they needed to see in sonograms and so all was fine.  Blind faith in doctors and priests is a dangerous thing.  This lack of “sensing” him has haunted me since.  Should I have spoken up more, gotten a second opinion, read more about it on line?  Truth is, I trusted the doctors, and was comforted by the wisdom of older moms that all children are different.  I didn’t know how true that would be in my life.

He got larger and larger in my uterus, and I got higher and higher blood pressure and voided increasing amounts of protein into my urine.  Apparently that is a very bad thing to do. Basically, he was squished in a small woman’s womb and it was HOT in there.  He came out into this world like it was a prison break. 

I tried to nurse him soon after his birth but he gnawed on me something fierce.  It wasn’t the sweet soft suckling of my first born, but rather a rough chewing.  I had so much pain throughout my body from the delivery that I couldn’t inflict more on myself even if it was my son and his first feeding.  Self preservation is a strong feeling.

When I held Seamus, he wasn’t happy. I would move about the room and adjust myself and he would scream and not stop.  He was sent as often as possible to the nursery. 

When we brought him home, I was still on bed rest as my blood pressure had not yet corrected itself.  Eventually, my blood pressure came down and my husband returned to work and we were left on our own with the occasional helpful visit from a family member.  I remember asking for someone to draw me a diagram of how I was supposed to pull off this mothering to two small children thing (Fiona had just turned 2.)  Ain’t easy.

But real help came in the form of my husband’s mom Ingrid.  She stayed with us for nearly 3 weeks and helped get us through one of the hardest times in life.  She did the most wonderful thing which was to hold my new baby who I couldn’t seem to hold without making him scream.  He justed wanted to be held, with no movement at all and I could not do that but Ingrid could.  She had no where to go and no one to tend to other than this beautiful boy.  She would hold Seamus for hours at a time while he slept on her arm that would go absoultely numb. 

When she went home, it was me that was left having to hold my son which was something that was hard to do and hard not to do.  I felt like making a prison break myself.

Still do sometimes.  We all have to be held steady sometimes, huh.

Mazey

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The Gateway Drug

We finally did it.  I didn’t want to. I thought I was better than that.  But with one little slip of paper handed over to the pharmacist and one gulp and swallow by my little boy, we embarked him on a life that will likely include medication for the rest of his life.  This drug is to treat his ADHD.  The drug is called Gaunficin/Tenex and as my friend calls it – The Gateway Drug – for ADHD and spectrum kid. What is it a Gateway to I wonder? 

The gateway I am hoping for is a calmer son, a less violent son.  A son who hits me less.  Of course I have the feelings of regret wishing I had been the one to bring tranquility to his life.  But now I put my hopes in a tiny little white pill to do what my instincts told me for 6 years that I could fix with time, attention, hugs, and cuddles.  But I couldn’t and nor could the OT’s and speech paths and psychologists and developmental pediatricians.  

And so now, I hand over this tiny pill to my precious baby to ingest.  This pill that was created in some factory but God knows who, God knows where.  I am expected by put my hopes in THIS little spec of whiteness to deliver to us a son who no longer is tormented by behaviors that cause him and us so much pain. Talk about a bitter pill to swallow.

His eyes were so tired this weekend with dark circles under his eyes.  There were many extra yawns as his little body adjusted to this assault on his over hyperactive self. He fought through the tiredness as best as possible, but did I notice something missing — his here I am to take over the world sense of being? Did I take that away from him? Is Dear God what have I done.   

“What is this mommy?” I am asked.  “Just some vitamins to help you grow strong,” I explain, I lie, I force myself to believe. “Why is Fiona (his sister) not taking one?”.  “Because little boys like you need special vitamins.”  That is true I guess.  But it sure doesn’t feel special. It feels sad that those tired eyes and that tired body is working through a chemical reaction, sorting it out, as it messes around with his insides.  He is perfect in my eyes.  How much more perfect can a spec of chemical made by a stranger in a factory improve on that.  I am told a lot.

Mazey

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The visit with the developmental pediatrician

Today we met with someone considered to be one of the top dev peds in the area – Dr. Charles Conlon.  We spent two hours rehashing all the things that have made life so hard over the past 6 years.  It is amazing how quickly I can fall into that deep pit feeling of hopelessness after spending years of trying to climb out of it. Year one what do you remember, year two and so on.  We ended up with hearing that Seamus will likely benefit from medication and heard many new types of diagnoses bantered about.  Not sure how many labels we are up to now.

It was grueling and it reminded me how tiring this journey is.  We went out for a drink after wards.  It didn’t help.  I was mad.  Mad at myself that I got preeclamptic in the pregnancy. Mad that I didn’t make more noise with the doctors about not feeling my baby move in utero, mad that I have a bloodline that has the capacity to produce someone so flawed, mad that my husband had nothing to say when asked if there is any history of mental health issues in his family .  And, finally, so mad that I am now have to fix my son who has all the best qualities of my dad and his worst as well. 

We return in two days with our son for him to be looked at and tested.  Yet another test, another evaluation, more recommendations, more followups.  He is Seamus Inc.

I am mentally fatigued by today and frankly feeling blue because of the memories that were stirred during the meeting.  But it’s the only game in town — to keep talking and telling his story til he can hopefully one day advocate for himself. But I have to ask – can he really be “fixed”?

Over and out

Mazey

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Why the need for Sensing Seamus?

Hello world.  I am a mom of a child who just turned 6 years old. He has autism.  For the purposes of my blog I will call him Seamus and I am his mom Mazey.  Why the blog?  Why now after 6 years of coping with his autism?  The reason is that for the first time in 6 years I can breathe. I can smile with ease.  I can think.  I have graduated.  College was 4 years, and this was 6 and man I earned my stripes this time around.

The purpose of this blog is to round up all those who are out there who are suffering like I was just a few years ago, who are overwhelmed, who can’t see themselves making it through another day.  I want to tell you about our story and maybe our journey may mirror yours, and you will not feel as alone as I felt.  I will share what I know and I hope others will comment so we will have a collection of information for all parents and care givers and frankly anyone who cares.

Seamus is now 6 so I have a lot of catching up to do.  I will share stories from the past as well as share happenings of the here and now.  Please share your thoughts. 

Tomorrow we are visiting a developmental pediatrician in Bethesda MD who comes very highly recommended – Dr. Charles Conlon.  We of course hope he lives up to the praise he receives.  We are going for a consultation on medication which is a hard topic for any  parent.  I will let you know how this goes.

In the meantime, check out this article about the similarities in symptoms of mom’s with kids with autism and combat soldiers.  From my experience, it was long overdue to see that validated. http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/

Later

Mazey

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