When my son was first diagnosed aged about three and half years, it took a while to accept the diagnosis let alone allow anyone to care for him.There was his behavioural issues to deal which I found very difficult to cope with.I will admit that,I did not know how to deal with some of the new and ever changing behaviours.It became difficult emotionally and even physically to handle him during the tantrums and anxieties.
Outings gradually became an exhausting,draining and scary affair. I started to stay indoors from the negative experiences and attitudes I encountered. It was the best way I knew how to deal with them at the time. Feelings of helplessness and depression set in as I questioned my parenting ability to my son and doubted my ability to cope.
When isolation set in and became too much,I began to talk to people,teachers,doctors and other family members who had an idea of what support was available. I read articles,leaflets and online sites and communities alike.
After along thought,I decided to contact the children's social services, the team for disabled children.They are your first port of call. It took some firmness however, as I recall the telephone conversation,the lady who picked it said to me, "if your son is just autistic,we wont be able to help him". Being the kind of adamant person I am,I told her,!when you say,"just",you are diminishing the difficulties of the disability as I am the mother who has the daily experiences of looking after him".I told her I just wanted to speak to a social worker and needed an assessment for my self and son. With some perseverance she put me through albeit reluctantly.Speaking to the social worker,I explained my family situation and they agreed to come and do an assessment at my home.
An assessment will pinpoint your family circumstances,needs and situation which should lead to getting respite for your child/children which is important for you and them.Breaks are a lifeline and key to keeping you well being and need I say sanity.
The point I am trying to make here is that, we must be firm and rather pushy when it comes to getting support for our children.That telephone conversation will be the most important call to start a relationship with a social worker.A social worker is important and necessary for many reasons. In another post I will discuss why and how to keep in touch with social workers. Had I given up at the first comment on the phone from the lady,I may have struggled longer with no support.
We as African's are going to feel a lot of guilt,isolation,frustration and helplessness.
It is important to accept the diagnosis for the sake of your child's welfare for one, and secondly, so that you can begin to focus on getting the necessarily support to help your child's development and everyone will do so in their own manner and time.Early intervention really is key,I am glad I accepted help and now I can see my children thriving for it. Their speech has improved,they are more social,happier and more accepting of people and get more used to their outdoor and everyday surroundings.Children with autism need exposure to the outside world in order to help make sense of it and get used to it.
It look me six months to fully accept my second sons diagnosis after I saw the pediatrician. Another month,seven months to tell my own father not because he would't understand but because I was just struggling emotionally to accept yet another of my children had this disability,the awareness levels in our communities and country is still very low. Today,I see in my children, what other parents with no special needs see.They have positive abilities and so much more that I have to be happy about.
Most of my family are abroad, a sister in the U.K is the closest I have but we live far apart and my support levels are virtually non existent. So for me,the 16 hours I get in the holidays for my nine year old and 8 in the term time really help me get in touch with my self or spend time with my other children or pursue other interests.
My 6 year old was also given 3 hours of respite shortly after diagnosis.
The social worker dismissed his qualification for respite under disabled children's team saying that,he had seen him physically and that, he wouldn't qualify for respite!. I was of course not convinced,so I spoke to my support worker at the school,made a formal complaint online to the council but hat too was a refusal telling me he still was not qualified. I had regular reviews for my older son due my health and during this time the manager of the team was around and it was at that point that I brought about the issue.There and then, he told the social worker to raise the respite issue and have it taken to their panel meeting. The support worker also spoke to the social worker and eventually in his school notes and assessments by teachers they found out that his learning need qualified him to access respite from the disabled children's team!.
That was the real moment of satisfaction and a lesson that we must persevere and leave no stones attached.
I really hope this post has been helpful,feel free to ask questions and to comment.
Stay blessed and take care.