My Baby

My eldest son was the culmination of years of hoping and trying.  His arrival was keenly anticipated by both sides of the family who were most anxious to welcome their first grandchild.

The labour was complicated, the second stage prolonged.  The baby was in distress and delivered by forceps. 

He was born shaking like a leaf.  The nurse took a blood test to see if he had low blood sugar, but his blood was fine.  She told me the result then looked at me with an expression that, if I could put it into words would say, "I know what is wrong with your baby but I can't bring myself to tell you.  I am so sorry."

I know that hindsight is 20/20 but how I wish I knew back then what I know now.  My newborn baby was having his first anxiety attack.

 Every little thing upset him.  A light going on.  A paper rustling. He needed to be held all the time.  And no matter how much he was fed, he was never satisfied.

We would have feeds ten times a night.  I would carry him around in a sling all day so he could be close to me.  You really don't know yourself till you have a baby, especially a high needs baby.

And oh the crying!  He was hard to settle because he hated going to sleep.

He was also highly intelligent.  One day when he was 7 months old, he was playing with some kitchen utensils on the floor while I answered the phone.  Or so I thought.  When I turned around  he was still playing on the floor, but he now had the kitchen scales, which I had not put out for him.  I kept them in the top cupboard.  I looked up at the cupboard and saw that it was open.  I also saw that the kitchen drawers had been pulled out.  He had crawled up them to get on the bench, then reached up, opened the cupboard and taken the scales and crawled back down.

When he spoke for the first time it was in a full sentence.  He hadn't made a single approximation - no mumums or dadads.  Getting worried, I said to my 9 month old baby, "You really are going to have to start talking soon so we can understand you better."  And he replied, "No, I don't have to!"

Getting to sleep continued to be a dreadful problem.  We had to take him out in the car for a drive until he dozed off.  Otherwise, I had to get into bed with him until he fell asleep.

Cartoons started giving him nightmares.  Bugs Bunny was a particular problem.  He would wake up screaming. "Bugs Bunny is trying to take me down his rabbit hole."  Night after night after night.

He was always a worry wart and very emotional.  When he had a tantrum he couldn't stop.  They lasted for hours until he fell asleep exhausted.  He hated being parted from friends.  He wanted to drive the car and as he understood all the manouvers necessary, couldn't reason why we wouldn't let  him.  But the worst tantrum he had was over death.  He had been playing with his leggo blocks shortly after his 3rd birthday when it suddenly occurred to him that he was going to die one day.  He was inconsolable.

Once school started we discovered that when he set his mind to something, he would perfect it at any cost.  Sport, for example.  He was absolutely determined to win the aths, and he did. 

But his problems with anxiety were becoming an increasing concern.  He started confessing little acts of naughtiness.  Then he would confess them all over again because he thought he had left out something.

One day while out on a walk he confided that he was having really scary thoughts, like nightmares he couldn't get out of.  It was well and truly time to call for help.  The GP referred him to a child psychiatrist.  There was a 3 month waiting list to get in.

In that time he deteriorated.  I should add also that my husband was also having difficulties with anxiety and depression. We had some major family upsets, when my father sexually abused my daughter and sides were taken in the family largely in his favour.  Also, working in the Catholic school system was becoming increasingly stressful due to the crisis in the Church.   They were both getting sicker by the day.  We lived in the country.  There were no services.  I was pregnant with my second son and confined to bed with severe oedema.

My son would now only walk through doorways backwards.  He would stop every now and then and tap things.  He could no longer say his prayers.  I overheard him trying to say a Hail Mary.  "Hail ... Mary.......Full ...of ........grace...............Hail........."  He didn't think he was saying it reverently enough and would keep going back to the beginning to try and do it better. 

My husband, meantime, was not getting out of bed.  Voices were telling him to murder someone.  He asked me to hide the knives.

Finally my son saw the child psychiatrist.  OCD was diagnosed and medication was started.  By this stage, he could hardly speak.  He would sit, glazy eyed, shaking his head.  He was trying to shake out the nightmarish obsessions.

Improvement was drammatic.  It was incredible.  After 6 weeks, I felt like I had my son back.  Medication made such a difference, I will always be grateful that we live in the age we do.

My husband was diagnosed with depression and anxiety and likewise put on medication.  In the meantime, I had my 3rd baby.

My husband could not stand the sound of the baby crying.  I had to have the baby with me at all times.  My husband was off work for a total of 8 months.  We had to live on superannuation.  But finally things did settle down.  The psychotic period passed.  His mood improved.  He went back to work.  Fortunately he is outstanding in his profession and will always be encouraged  and supported with work.

My eldest son went back to school and started doing extremely well.  At the end of High School he was the most outstanding student.

Then he crashed.  He often could not face going in.  He was finding it harder and harder to write essays.  Then paragraphs.  In the end, he couldn't write anything.  He officially left school.

But work was just as difficult for him.  He can't handle pressure.  He can't go shopping.  Although he is the sweetest, most obliging and helpful person, there are cleaning jobs he just cannot do.

So he decided to spend some time with his best friend and they were happy for him to move in.  He was the fittest he's ever been and was beginning to find self esteem and confidence.  He and his mate got jobs but they were only temporary.  To cut a long story short., his mate's parents suggested he could use natural products instead of  medication and that if he did, it would be easier for him to get permanent work.  And in all fairness, I should add that they told him he should try it under medical supervision.

My son has OCD.  When he's obsessed with a thought, there are no mitigations.  He took himself off his medication cold turkey.  He didn't tell me.  And when he couldn't get work, he came back home.

After 6 weeks his mood started going downhill.  He developed a severe tremor.  He looked like he was having seizures.  Finally he admitted what he had done.

All the doctors supported him in the notion that going off medication in favour of natural products was a valid choice and he had the right to make it, but it has to be done gradually and you can't complement St John's Wort with medication.  Plus there are no standard controls for St John's Wort i.e. no guarantees of the exact level of serotonin in each capsule.  Plus it is ultra expensive in the quantities we would need to be using.  They put my son back on a medication schedule.

But it hasn't worked that well this time.  One day while walking to his bedroom his legs froze and he couldn't move them.  He was admitted to hospital and given physiotherapy.  Finally he got moving again. 

But he has episodes where he slows down to the point where he doesn't move or speak.  Then he looks like a building imploding. He collapses.  He zones out and can't speak or move.  Often, he has severe anxiety attacks that look like seizures without the unconsciousness.

His psychiatrist has tried different approaches to medication but nothing seems to be working. 

My baby is one of the loveliest people I know,  Polite, affectionate, considerate, and very handsome.  I just can't believe, with all his wonderful qualities, his intelligence, his physical fitness and all his talents, that life has come to this.

I have a particular axe to grind with the homeopathic zealots who so self-righteously encourage people with serious mental health difficulties to come off their medications without understanding the side effects and complications.  I am also not amused that no-one in the medical profession has told me what is going on with my son.

Just recently, we took to selling Avon, and this I think has helped him, as he is knocking on doors and speaking to people and getting out in the fresh air and sunshine.  But even with this, he can implode and zone out.  Today he didn't have the energy to get up. 

perseverer perseverer
56-60, F
5 Responses Feb 17, 2010

Thank you for reading and commenting on this story. Jo is doing much better now, especially after a personal carer was hired for him. Big thanks go the GROW movement, too. At this point in time, he has had no episodes for several months, is doing a course in community work with a guaranteed job at the end of it, and is planning a trip overseas with a friend. Thanks be to God!

No worries as long as our greatest counselor is with him. This world is surly is a battle field and we are the soldiers. I admire your perseverance,Sister!<br />
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One word about your son, He's extraordinary. : )

Thankyou Presence, but many people face mental health challenges as part and parcel of daily life. My faith in God has helped a lot. When things were at their worse, I never doubted for one minute that there was a wonderful plan for their lives. My husband is the inspiration, the way he has faced his condition in humility and triumphed through it.

I can't thank you two enough for reading this story and supporting me the way you have. ATSF severe medical conditions are never just physical. They are so consuming psychologically as well. I see now we have something else in common in having children with special needs. Your sons sound like fantastic people - to think they managed to become engineers with everything else that goes on in their lives. That is no small degree of credit to their parents. And your second son with his worrying ataxia, a wife and a new baby. Difficult as it is, where there is love there is always a way to survive it, and they will. Don't you dare belittle your issue. I'm sure you must understand by now, with the amount of time my family's health issues occupy, how rare it is for someone to actually have the opportunity let alone the inclination to talk to me on a personal level. You're the one who has helped me!<br />
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Ripplingwater my heartfelt prayers are with you as from one wife and mother to another, I know what you are trying to contend with. And it is still wonderful. A very unique journey full of special joys. The key is in understanding it for what it is, and learning the correct ways to respond. I just so agree with you about the difference accessible services can make. In New Zealand our town had a regional based mental health team who were on call 24/7 to visit people in their homes. I wish they had that here. Ripplingwater you sound like a wonderful mother and I just know that you will help all in your family to achieve their potential.

you are a great person - my husband sounds almost like your son as he sufferes with anxiety and depression and ocd tendancies - my second son is starting with some ocd and aspergers like tendencies (having to have patterns and lists and freaking out over little things also spinning things) and now although he doesn't have a diagnosis the dr has said he is developmentally behind in his social behaviour - but he's the sweetest little boy - very loving and generous - and very compulsive too.. i feel sorry that your son is going through all of this - and wish that there could be better services for children - so that they could be trained how to cope before they grow up and have to deal with all these things.. huggs!! you are a strong woman.<br />
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this story seemed almost too strange to be true - but a lot of it I've seen so i understand !