ON WORLD AUTISM AWARENESS DAY 2014 Since 2009, spreading autism awareness and understanding has been my calling, I do it every day and everywhere so, today on WAAD 2014, I am just going to share a personal message with parents whose kid(s) have been recently diagnosed. Dear fellow parent(s), Firstly, I want you to know that you are not alone on this journey, that there is no sin you committed that caused your child to be diagnosed with an autism spectrum disorder and that God has not forsaken you. There is a HUMONGOUS global community of parents who have been where you are right now (unfortunately, that community continues to grow at an astonishing rate); they TOTALLY understand the confusion, fear and (probably) the anger that you must be experiencing now, this community will become a lifeline to you. I must tell you though, that it is ok to go through those ranges of emotions but you have to swiftly snap out of it cos you have just entered what will undoubtedly feel like the most significant battle of your life. Your focus and strength must now go towards equipping yourself with all the knowledge and information you can to help you learn to advocate for your child and address the unique issues they present. You see, there are different kinds of autisms and different complex pathways to each autism; no 2 kids on the spectrum EVER present the same though they may share similar symptoms, so it is paramount that you become THE expert at your child’s autism. I am a great advocate of reading autism related books and following current autism research cos this autism thing eh, is soooo complex and dynamic, everyday there are new findings(sometimes contradictory sef)so you need to stay on top of it all and be able to filter out what you need. A great place to start is THE AUTISM REVOLUTION by Dr Martha Herbert and THE AUTISM BOOK by Dr. Sears. These are definitely not the only good books there are, but, they are good books to start with and I don’t want to overwhelm. In that same spirit, there are also 2 great websites for those that can access the web, The Autism Speaks (autismspeaks.org) and National Autism Association (nationalautismassociation.org) has an abundance of extremely useful resources. Now to the part I am most passionate about, PLEASE do NOT let ANYBOBY try and get you to give up HOPE about your child’s future or hope for their recovery. This is a very long journey you have begun and you cannot afford to lose your hope. Hope is what gives you the strength to go on when you don’t see progress, when progress is too gradual for your liking, when there is regression following progress and when you are just tired of it all. I will be VERY honest with you, there is nothing easy about this autism business, there is still so much that is unknown about autism, there is so much controversy even within the autism community itself you’ll get confused. The truth is that there are no guarantees period, we do not know why it happens that some children recover or ‘lose their diagnosis’ even if they are a minority within the community, but what we do know and science has proven that with early intervention, that minority (about 10%) have recovered and others have the opportunity for a better outcome in life. THAT is worth holding on to. I am a woman of faith so I always say, seek the face of God for guidance and direction on the best practises for your child, you’ll be surprised to know that He would give them. Just because science haven’t ‘discovered’ the answers yet doesn’t mean that God doesn’t have it. He is after all, the creator of the universe and everything in it (including science), He is the Master Physician ad there is nothing impossible with Him. You see I said personally seeking it not carrying the child from prayer house to prayer house and exposing him/her to all manner of abuse as we so frequently have in Naija. Seeking God’s counsel for therapies, medications/supplements, schools etc was the best thing I ever did. You also must be fully involved in the minute details of your child’s care, there is no outsourcing to therapists and special schools on this one, there must be follow-up at home to sustain what is being done in therapy and school. Overtime, you will find that you have become a specialist in everything – general medicine, pharmacology, therapies, special education and individualised education plans you name it. You will acquire some funny autism/medical jargon that will blow your mind. Find other mothers (parents) who have and are working this path and seek and share knowledge with them. Surrounding myself with warriors mothers was the 2nd best thing I ever did, better still, I surrounded myself with mothers whose kids are a living testimony to the hope for recovery in this our Nigeria where we do not have much in terms of services for our children. (I use the opportunity to say a big thank you especially to Dotun, Doyin and Toun, thank you for helping me keep the hope alive). Share fellowship, have each other’s back and pray together and watch heaven move on your behalf. No one, not even your family will fully understand what you are going through than this band of sisters and brothers. There is so much to share but Rome was not built in a day so I will round up by saying take very good care of your health so you do not burnout, research shows that mothers of children with autism experience chronic stress SIMILAR TO COMBAT SOLDIERS and struggle with frequent fatigue and work interruptions. Finally, a diagnosis of autism is not a death sentence, our kids our wonderful and special gifts from God, created for a plan and purpose and must fulfil their destinies in Jesus name; we just have to work a little harder with them. We must love them unconditionally and value them for who they are, how we treat them will determine how our society will treat them. When you get weary, remember God says he’ll harden you to difficulties and will be our strength when we are weak, when we stumble on this journey, we get up and continue the fight and in all things we never lose our joy and we never lose our hope. #INFINITEHOPE #ENDLESSHOPE
Posted on: Wed, 02 Apr 2014 11:15:09 +0000
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