Helping my son to ‘find the words’

faffa-se-eerste-daggie
DAY 1 of Grade R at Carel du Toit (2010) ~ my lost little boy at 5

My journey as a mother with a special needs child began in 2010 when my son was diagnosed with Apraxia at the age of 5.  Apraxia is described as ‘the inability to speak’ or more simply, struggling to ‘find the words’.  The scientific definition is:

Apraxia


I’d like to share 7 things I wish I knew as a mother with a special needs child with you:

1. Trust your gut feeling

When my son (Francois) turned three, my instinct told me something was seriously wrong as his vocabulary at that age was only two words.  To say I was alarmed is an understatement.  The feedback that I received from speech therapists was that at that age it was not unusual for boys to have a limited vocabulary as they take longer to develop and talk.  I trusted them and waited.  What a fatal error on my part!

2.  Never trust the experts “blindly”

At the age of 4, I realised the need for serious intervention as Francois displayed extremely aggressive behaviour and frustration due to his inability to communicate.  Thus the search for answers and a diagnosis began.  A highly esteemed doctor told me I needed to discipline him more and that he was only acting up (I kid you not!).   A well-known paediatrician told me he had a genetic disorder, and suggested that I send him for a brain scan, which I did at a HUGE expense, only to find that the results were negative.  She prescribed a Ritalin dosage, which I discovered had the potential to turn a grown man into a total zombie!  I also visited several “experts” whose diagnosis ranged from autism to every disease known to mankind (Francois is currently on Ritalin, 20mg LA, only on school days).

3. Persevere until you get the correct diagnosis

Francois was five years old when someone suggested I take him to Carel du Toit, a school for hearing impaired children.  A social worker at the school took one look at my son and exclaimed, ” oh, he has Apraxia!”.  I was in tears, but at least I was getting closer to the solution!

4.  There are no quick-fixes

After receiving a proper diagnosis, take action by researching the best specialists in the field of your child’s diagnosis. Grow a thick skin, and through your tears do what you need to do to move forward! Refer to my Blackbook at the bottom of this post for information regarding the best specialists for Apraxia in the Western Cape (my personal opinion) as a starting point.  However, investigate a team of experts in your area.

Take heart.  Some days it will feel like you are making progress, and on other days it will feel like you are fighting a losing battle. It is normal and as your child grows, new challenges will arise.

When Francois was five years old, our main concern was his serious speech impairment, which escalated into his inability to tolerate any “strange” food and his sensitivity to loud sounds.  Now, at the age of 11, we are fighting the battle of reading and writing.

5.  Don’t compare

Your child is unique! Compare your child’s progress against what he or she has achieved.  If I compare Francois with other 11 years olds, I will quickly realise that it is akin to comparing apples and pears. BUT, when I compare him with his younger self, I can proudly say, “baby you have come a long way!”.  He is surpassing our wildest expectations – from speaking four words as a six-year-old to an 11-year-old with a vocabulary that grows and surprises me each day.

6.  It is OK, not to be OK!

Some days you will feel like you are falling apart. Believe me, it is possible to cry for 72 hours non-stop!  Other days the achievement of small victories leave you elated and ready to face another day.   Soon you will realise that you are only human and that your best efforts are good enough.  Remember this truth:  you are not a super-human, only a parent who tries to do the best with the cards that life has dealt you.

7.  There are angels amongst us

For every horrible experience and negative report that I faced on my Apraxia journey with my son thus far, I can honestly testify of so many people, who with hearts of gold, carried me and advised me. Yes, many of these ‘angels’ are from the medical profession, and others are mothers like me who shared my tears and my story.  I am grateful to newspaper journalists that are not afraid to publish the reality of Apraxia, and to friends and family for helping me to get Francois to all the therapy appointments that he needed, despite him being an angry, unmanageable toddler that could not speak!

francois-2014
Francois in 2014 ~ Confident &  happy young soul.

Story in the Mail & Guardian about Francois by Mia Malan: http://mg.co.za/article/2012-04-20-special-needs-an-unrelenting-fight

Francois Wiese receives horse-riding therapy at Jan Kriel School in Kuils River in the Western Cape.
Francois receives horse-riding therapy at Jan Kriel School in Kuils River in the Western Cape.

My Blackbook of the BEST-of the best in the Western Cape (South Africa)

  • Carel du Toit school for hearing-impaired children, at Tygerberg hospital.Carel du Toit a special needs school
  • Carey-Lee Vermoter, Psychologist
  • Tanya Jordaan, Speech Therapist & Audiologist
  • Bettie Breytenbach, Speech Therapist
  • Prof Pieter Fourie, Paediatrician
  • Jan Kriel, school for children with special educational needs
  • Jan Kriel School
  • Tina Cowley reading center in Eversdal
  • Tina Cowley

Please contact me at info@sandrawiese.co.za if I can help you in any way!

To read more about Apraxia read here (excellent post!)

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