Coping with a Special Needs Child

Motherhood is an unpredictable journey.

When I found out I was pregnant, all the obvious thoughts came to mind. Will it be a boy or a girl? Who will they look like? How much will they weigh? Aaah, labour!

Of course, every expecting mother wants, first and foremost, for the baby to be healthy and what’s otherwise considered ‘normal’, knowing we will love them either way.
When Liam was born he was about 3 and a 1/2 weeks early and spent his first few days of life in NICU. His first few months home were scary while he suffered with silent reflux- common in young babies and maybe more harmless than they appear. Fast forward throughout his first and second birthdays, Liam sprinted past his developmental milestones, from teething to weaning to recognising first words.
By the time he was maybe 2 and a half years old, I began to question whether his speech was where I thought it should be for his age. Further behavioural observations like isolating himself from playing children, needing constant routine (played with his toys the same way every time or lined them all in straight lines) and what I considered to be intense tantrums lead me to consider the fact that Liam may have a bit more going on than the average 2 year old.

Oh, and there was also the memorizing of books and TV shows and counting to 100 before the age of three.

As I said, not average.

At the age of 3, just before our relocation to the UK, Liams paediatrician shared some of her own concerns including some of the above and referred him to a psychologist for Autism assessment. The usual two-day test and analysis, took Liam only one day to complete. His results came back inconclusive for autism mainly due to the understanding barrier as a result of the language disorder he was in fact diagnosed with- Mixed Expressive- Receptive. He was also showing signs of Echolalia– the tendency to repeat misunderstood questions as a form of “computing” it’s components in an attempt to formulate an answer. Other observations included his keen interest in words and numbers and heightened ability to read.

Even with my initial suspicions, to say I was prepared for his diagnosis would be a lie. It was a relief to have an answer to our questions and be provided with some methods and tips to help him improve. But it also meant we had a long road ahead of us to prepare him for the next few years of his life. We had to rethink everything about how we communicate to him and how much we could expect him to understand. I feel guilty to say it now, but it was most frustrating to not know what your child is asking for because they don’t know what words to use. Many-a-time I cried right along with him out of sheer defeat after asking him to repeat himself, getting nowhere and it resulting in a full-blown tantrum.

As a “special needs mum” I definitely think the hardest part is trying to help others understand Liam and what having his disorder means. As much as I want to help make others aware, I often feel like I’m defending him against judgement. I know most of the people around us who may ask questions like why he’s potty trained so late or why he doesn’t speak like a lot of children his age, mean no ill-will but every once and again I come across a skeptic who reiterates, “He’s just young, they develop at their own paces. Next year, he’ll be completely normal.” As much as I wish it were that simple to speak it into existence, I know it will take my dedication and understanding to get Liam where he needs to be.

Coping with these changes meant embracing this diagnosis as a challenge, one I want to win, and it began with these steps:

Acceptance : I personally feel you cannot offer adequate support if you do not first accept the diagnosis. John was in denial, I think, from the very beginning of it all and even after the diagnosis. And I get it; you don’t want anyone telling you your child is anything less than as perfect as you see them in your eyes. But we knew we had to accept it in order to truly help him.

Patience: Not one of my strongest personality traits and I’d be lying if I said I don’t still lose it from time to time. But it’s a process and I know that it’s not something that will happen overnight. The right amount of time and attention has to be dedicated.

Change approach: Everything I thought I knew about communicating with Liam had to go out the window. A new approach had to be adopted with the help of the psychologists guidelines.

Enjoy the moments: With special needs, it can be difficult to enjoy the positive moments and separate them from the disorder itself. Now with Liams speech developing more, he really comes up with some funny stuff and I find myself laughing, beaming actually at how far he’s come.

Although I’ve always been aware and empathetic to special needs mothers, guardians and families, I now consider myself one of them and aim to become more involved with raising awareness about how we can help them more.

The year is almost over but here are some important special needs awareness days left for the year:

September

Craniofacial Acceptance Month
Duchenne Muscular Dystrophy Awareness
Fetal Alcohol Spectrum Syndrome Awareness Month
Hydrocephalus Awareness Month
National Spinal Cord Awareness Month
Sickle Cell Awareness Month
September 7- World Duchenne Awareness Day
September 9- Fetal Alcohol Awareness Day

October

ADHD Awareness Month
Down Syndrome Awareness Month
National Disability Employment Awareness Month
National Dyslexia Awareness Month
Occupational Therapy Awareness Month
October 6- World Cerebral Palsy Day
October 14-20 Invisible Disabilities Week
OCD Awareness Week
National Physical Therapy Month
Rett Syndrome Awareness Month
Special Needs Law Month
Spinal Bifida Awareness Month

November

22q Awareness Month
Epilepsy Awareness Month
November 1- LGS Awareness Day
November 7- National Stress Awareness Day
November 15- World Ohtahara Syndrome Awareness Day

December

December 3- International Day of Persons with Disabilities

“If a child can’t learn the way we teach, maybe we should teach the way they learn.” – Ignacio Estrada

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