It was those first few years of uncertainty and doubt, that might have been the most difficult for her. With it being the first time that anyone in her family had been exposed to disability, it was hard to accept but even harder to understand. She soldiered on during this time of  uncertainty and attributes her strength to that of her son’s.  Understanding that every day dealing with the effects of Cerebral Palsy on Esona and the family is difficult, she continues to hope that it will get easier.

Although the effects of Esona’s disease might be difficult, there has been days where it all seemed overwhelming. Even more so, when confronted with reality of economic hardship and a lack of emotional support as a result of Esona’s disease. It takes a remarkable kind of inner strength from a remarkable person, to be dealt with the cards she has, and yet live life with the gratitude that she does. Her focus on the positives such as her son’s remarkable defiance of his prognosis, the overwhelming support of her other sons, and the wealth of knowledge she has gained from and through Esona. She even uses that knowledge to help care for others who also affected by disability, as a carer at Iris House.

To understand her optimism is to understand the infinite love  she has for her child, and to understand her suffering and pain is to understand a mother’s loss for what could have been. Hers is the story of the loss of preconceived dreams and expectations of normality, but the gain of a beautiful gift with needs that foster personal growth.

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My journey with Mathew started when he was two years old when a paediatrician said he was PDD-NOS. No explanation and no details at all on what it is and what I should do.

At a later stage, I tried to get details myself and found out it was Autism.

I went through so many links to try and find out what the next step was but did not have any luck with schools as they are not educated about autism and doctors either.

One Dr Profressor Fourie eventually explained a little and spoke about a diagnosis.

It has taken two years to get to a school I found called Broad Horizon in Kraaifontein where I finally met a lady who had info and showed me to Autism Western Cape and parents who had their child diagnosed by psychologist Bettie Rall.

Mathew was officially diagnosed in April  2015.

Because Aspergers was taken off, she could not tell me Mathews level of autism. So according to her report, Mathew just has Autism (the end). No levels etc.

I contacted Autism Western Cape and went on a workshop called  Diagnosed what now? This was  NOT helpful at all as it had nothing to do with what parents wanted to know like schools and meds and where to now.

They explained the behaviour of an autistic child.

They were also supposed to help me with schooling advice and support, but the ladies are so snowed under that they are not supporting anyone.

I decided to open a Facebook page for Mathew and research myself and went on a course at Autism WC as well as did general development courses and sign language basic.

No one told me that Makaton was used for Autism, or I would have done that course which I still want to do.

I went on another course and another and finally started getting my own info and finally sorted Mathews medication.

Got him screened at Chere Botha school to get him on the education for special needs list which I was told is still 3-4 years long.

I was also told that I must still find him a school myself.

I have been struggling all year just to find a school that will cater for Mathew, a school that has minimal learners as ASD kids cannot be taught in a class of 18 which is where he is now.

I am still seeking a good school that won’t set me as a single mommy back R5000 per month.

I’ve applied for the care dependancy grant but even with that how could I afford a school and speech and occupational therapy and medication.

There is no way.

As for speech therapy, the government offers at a good price but the appointments are spaced months apart, and this will not help an autistic child where therapy needs to be weekly.

I am a mommy in distress, and all I want is the best for my autistic son.

Kindest Regards

Chantel Smith

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Dit was n doodgewone Saterdag more 11h, Michael was die een oomblik nog besig om soos die normale tiener seun Sms’e en Bbm;s te stuur en die volgende oomblik het sy ma n oproep ontvang wat ALS verander het. Oor die foon het hy angstig en snakkend na sy ma om hulp gevra en uitdruklik vir haar gese hy voel asof hy besig is om n hartaanval te kry. My ma was gelukkig nie ver van die huis af nie en het toe onmiddeliuk huistoe gejaag, maar toe sy by die huis kom, en roep na hom, was daar geen antwoord. Sy het toe op sy ligaam in die badkamer af gekom waar hy, steeds ten volle geklee, net sonder skoene, in die bad gele het en die koue water steeds besig was om in die bad in te loop. Hy het toe reeds geen pols gehad nie en hy was blou om die mond. Hy het n roggel gegee en ons ma het gedink hy was toe reeds dood. Gelukkig het hy toe hy begin sleg voel, n vriendin van hom se ma ook laatweet en toe my ma haar kontak, was sy reeds om die draai. Toe die tannie by die huis ingestorm kom, het sy dadelik na die badkamer gehaas, hom uitgetel en hulle het hom op die sitkamer mat neergele en probeer mond tot mond asemhaling toepas, maar daar was net geen reaksie nie. Die tannie het toe gese hulle kan nie vir die ambulans wag nie, en hulle het hom onmiddellik in die kar gelaai en hospitaal toe gejaag.

Na omtrent n uur was hy eers gestabiliseer. Dokters het na die hart scans eers besef dat Michael se hart verlaag is en nie op die gewone plek in sy ligaam sit nie en dit is wat bygedra het tot die feit dat hulle so lank gesukkel het om die hartklop terug te kry. Hy was onmiddelik in die ICU te Netcare Kuilsrivier opgeneem. Michael het baie erge brein skade opgedoen agv die lang periode wat hy sonder suurstof was. Dokters beskryf hierdie skade as “anoxic brain damage”. Dokters het later aan die familie verduidelik dat die oorsaak van die hartaanval, n verharde hartklep en vergrootde hartkamer was. Hy sal in die toekoms n hartoperasie ook moet ondergaan. Die brein kan wel genees en ander roetes formeer en die familie is vol hoop vir  100% herstel.

Tot dusver kan hy steeds nie eet nie, hy het n “Mick Key” (peg) in sy maag en word deur n pyp fyn en lopende voedingstowwe in gegee. Sy verstand is dus baie helder en as die familie vir hom instruksies gee, probeer hy sy bes om dit uit te voer, bv, as ons vra hy moet sy been ontspan. Hy kan ook nog nie praat nie so hy kommunikeer deur oogknippies, 1 is nee en 2 is ja. Hy het vir maande net gele en hy het wel in ICU en ook in rehab fisio- ,arbeids – en spraakterapie ontvang, maar sy spiere het steeds verkort. Dokters se dit kan ook gekoppel wees aan die breinbesering. Op die stadium het hy vreeslike pyn en krampe agv die spiere. Sy regterbeen is heeltemal opgetrek so as ons n doek wil verander, moet ons 2 mense wees want 1 word benodig om die bene uitmekaar en oop te forseer. Hy kan steeds nie sit nie, maar hy het n spesiale rolstoel wat R21 000 gekos het wat spesifiek ontwerp is vir sy huidige behoeftes aangesien dit hom in al die nodige plekke ondersteun. Michael se buitepasient fisio wat deur medies gedek word, is ook reeds Februarie uitgeput, so al die benodigde oefening word nou van die huis af deur sy ma en huishulp gedoen. Hy is op hierdie stadium ten volle afhanklik van hulp, 24/7.

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