The Diagnosis – Digging Out Of The Trenches

The Diagnosis – Digging Out Of  The Trenches

Receiving a diagnosis is often times both a devastation and a relief for parents.  The devastation comes in the form of a reality no parent wants to experience.  That kick in the stomach and feeling of panic that can shake you to the core.  The relief comes in the form of confirmation, confirmation that what you had suspected is in fact now a “label” or diagnosis and affirms your self doubt.  Parents know when something is not right and having a diagnosis can give the parent much needed direction and focus. Getting to that first diagnosis is sometimes a journey in itself.  There is often insecurity, confusion and differences of professional opinion.  Go with your gut, even first time parents know when something is amiss.   If you feel your child is not being evaluated properly it is your right as the parent to ask for further consultations.  On the other hand, there are times when the parents are not aware of developmental delays or behavioral red flags which is why parents need to be approachable if teachers, pediatricians or experienced adults suggest there may be a problem.  Putting off an evaluation or that discussion with your pediatrician is a mistake.  All the current data shows that early intervention is key to successful treatment.

The journey of a special needs parent is not an easy one.  There are lots of twists and turns and unraveling to be done.  It takes time, sometimes years of adjusting and refocusing your direction of treatment and choice of medical professionals. Keep in mind that often with young children the diagnosis may change as time goes on and many disorders are complicated with comorbidity or wax and wane adding to the confusion.  The first months and years are, I think, the most difficult and parents need to start constructing a lifestyle that will allow them the much needed time to research, become educated and seek the best opinions and treatments available for their child. Isolation is another concern for newly diagnosed special needs parents as the world suddenly seems overwhelming and foreign to them.  Finding support and a friendly ear is very important. 

Parents are at times at odds about receiving or accepting a diagnosis.  Parents who are not on the same page struggle.  Marriages are affected, siblings are affected and the special needs child becomes the center of controversy.  Being on the same page is very important.  There will be important decisions to be made, medication decisions,  traditional or alternative approaches, choices of physicians to be on your medical team and many others.  The primary care giver needs support.  Both parents need to understand the stress the disorder puts on the other and offer empathy.  Even the strongest of people at times need help coping and sorting out their emotions. Getting therapy for yourself or your marriage is not a sign of weakness, it is a sign of understanding the gravity of the situation and building a united – solid foundation.  Single parents have my heart.  Single parenting a special needs child is one of the hardest jobs on earth.  Finding support through family, friends and community resources is vital.

Accepting the diagnosis is one thing, accepting the life it brings is completely different.  I call it the Life Unexpected.  I think accepting “truly accepting” the life you will now have is key to progress and success.  Of course we want to fix our children, we want to cure our children we want to make them whole and take away their emotional and physical pain but often times that is just not possible.  Despite our best efforts, we cannot fix them, we cannot cure them.   The best many of us can do is manage, treat, teach skills and accept not only the diagnosis but the effect the diagnosis will have on all our children, our marriage, our child’s education, our friends and family members and most of all our expectations of what our lives would be.

 A diagnosis of autism or mental illness is devastating and of course different levels of impairment bring very different challenges but, it is what you have been given.  It is up to you to take the unexpected and move forward –not just move forward -  surge forward.  You need to find that determination to do what you have to do.  You need to go through many stages to get to your resolve.  This determination is not just for your special needs child but for your whole family.  The domino affect of an unstable situation can take hold quickly.  Will you make mistakes, absolutely, sometimes big mistakes, I have, but you will keep going.  You will forgive yourself, know you are doing the best you can and move on never giving up hope.

To accept the “label” or diagnosis your child is given is often the easy part.  Accepting that your life will be different, that your priorities will be different, that YOU are now different and knowing it will be alright – that is acceptance.  Why is acceptance so important?  Because this is a life long journey – the sooner you truly accept it, the easier the trip. 

I think that one of the most important aspects of acceptance is sense of self you project on the child. I think it sends a strong message to the child when we are always looking for that cure or that fix that they are defective.   Many children report feeling defective and shame.  Feeling defective is one of the most reported feelings among special needs children and adults when discussing their childhood. Parents need to be careful to not add to that.  Taking your child from doctor to doctor and therapy to therapy sends a message.  Unfortunately, I think it is unavoidable but attention needs to be taken.  Am I saying to not seek the best possible treatments?  Absolutely not.  Am I saying to limit therapies that are helping - Absolutely not.  I think parents should never never never give up – keep digging – keep searching – keep researching – being  persistant and sometimes going with your instincts pay off and pay off big time.  But choose your words carefully around your child as to not add to their feeling damaged – that is a heavy load for a child to carry.   My experience has been that discussing the child’s positives can outweigh the negatives they are feeling so make sure that your child knows they are great – great at anything – great at something – great in your eyes.

Being a special needs parent is not for sissy’s.  This is no time to be intimidated or shy.  You are your childs best advocate – you make the final medication and treatment decisions – you know your child – you observe improvements and regressions. You can interview pediatric or specialty practices to find the right fit – we did - you need to take control – research and become educated.

If I had to say the number one thing for any newly diagnosed parent to do it is this -  JOURNAL  JOURNAL JOURNAL it is an absolute must.  You are now your childs medical historian, the keeper of all records and observations that you will need, and often forget during chaotic times, to report to your medical team.   Even a spiral notebook with a daily one or two sentence writing about what you are seeing will do. 

As I’ve written previously as in the case of anxiety and depressive disorders – ‘Mental illness its not all in your head”  sometimes, not always but sometimes, there is an organic basis for anxiety disorders in children and adolescents and turning no stone unturned can open the door to “out of the box” thinking that can bring effective treatments.   Doing so can lead you to many different specialists neurologists, developmental pediatricians, cardiologists even endocrinologists (who I feel are key for females w anxiety disorders and other signs of endocrine disease) and a full blood panel work up should be done before any medications or treatments are started.  It is a lot of work, a lot of pressure but when it pays off, it really pays off. Putting together a team that will work together for your child will make all the difference in the world.

Understanding how a diagnosis of  Autism or Mental Illness is derived is important for parents to understand as well.  The DSM right now is not a friend of parents with children with mental illness in my opinion. Sensory issues are not criteria for autism which is a major omission – adult criteria is used for children with bipolar disorder when most children and teens do not present with clear episodes of mania and depression as do adults but are more chronic in nature with agitation, temper tantrums, rigidity and low frustration tolerance making the DSM criteria useless in diagnosing the majority of children with this mood disorder and temper disregulation. For the majority of  kids true bipolar disorder is very rare. The updated DSM-V  is under revision with much debate about Autism and Bipolar disorders and the possible addition of TDD Temper Dysregulation Disorder with Dysphoria which I personally do not want to see. I think it has a very negative connotation and will add to the stigma.  I do agree that additional diagnosis need to be added to account for this large population of children with mood and chronic agitation and hope that new gains being made in research are considered in the added criteria and labels.   In the end the DSM is needed for medical insurance coding and for diagnosis for school accommodations, which by the way is very important, but as far as treatment, I think it is not a useful tool.  Parents need to treat the symptoms not the diagnosis.  A child with a diagnosis of ADHD that rages using stimulants should not be treated with stimulants because it is the drug approved for ADHD as an example.  The DSM is used to classify and diagnose mental illness but is antiquated and will be getting a revised edition in 2012.  A little DSM history – the first DSM was published in 1953 with only 66 disorders, 1968 second edition with 100 disorders, 1979 totally revamped with multi axial system of coding and upgrades, 1994 was the last revision with 400 disorders.  It is long overdue and greatly anticipated. I am doing some very important interviews on my Blog Talk Radio show for The Coffee Klatch to make sure parents are aware of the significance and changes proposed.

So how do we get there?  How do we dig out of the trenches? How do we get to that diagnosis and the acceptance of it?  Stages vary among all parents but the isolation – anger – resentment - sadness even guilt seems to be universal.  Everyone will experience it differently but I think parents need to feel it – it is painful to see your child suffer – it is important to acknowledge that pain for your child and for yourself.   Often people comment on how myself and other moderators on The Coffee Klatch are so confident and  strong.  Guess what – we didn’t start this way – it was a process – it was done in stages – we have all been there, we have all dug out – some days it seems we are still digging.

So have your pity party – have a good cry – You deserve it - then pick yourself up and brush yourself off – you have a lot of work to do.  As difficult as this journey is – in the end you will know unconditional love and the true meaning of a purpose in life that most could never imagine.  This experience will change you – it is up to you whether it changes you for the better.

I wish you much luck, strength and calm.

My interview on "The Family Coach" with Dr Lynn Kenney "Accepting The Diagnosis" Part 2
http://alturl.com/5m3b8