Wednesday, July 20, 2016

I'm a Special Needs Mom and I'm Thankful

(Firstly... I wasn't going to share this part of the journey. But then I remembered a young African lady who wrote a private message saying that we black people are quite ignorant regarding such issues and she's glad our son came to us, and from my albeit limited experience, this is true. We tend to just leave children with suspected issues and either just tolerate them without realising that the issues can be worked on so the child has tools for a better life. And I thought of the families-also African-I know about who don't understand that the brain can be damaged enough for a child not to be able to control themselves...And I decided that because I'm black and South African, this story needs to be shared. We need more awareness out there of what disorders are like, of the fact that certain things can be worked on instead of just ignored and seen as someone's 'quirks.' There are too many black adults who never received therapy and therefore have disabilities today that they might have either overcome, or been taught how to work with to enhance quality of life.)

Truly, I am thankful for the diagnoses, I truly am. Because once again, I have been vindicated. The sick feeling, the feeling of being brushed off, of feeling like a nuisance, like a paranoid, hysterical woman, is now gone. No more. The experience I had with the first paediatrician is something I hope no mother with anxieties ever goes through. You know when you feel all those feelings during a doctor's visit AND the doctor talks down to you as if you are dumb, lack common sense and don't have three other children and experience with others, so know very well what's normal, duh!, it leaves you questioning your sanity and intelligence. I left that office feeling so dumb. I was shaking. I wanted to cry. I felt unheard. Like a waste of time.  It's one thing to allay someone's fears kindly, but to make them feel stupid, "You know, baby development exists on a continuum..."  I wanted to ask, "Do I look stupid to you? Do you think I don't know that?"

Then I saw a different paediatrician who had concerns too. But then I thought, "What if a different paediatrician would also brush me off like the first one?" I started thinking maybe it was just a fluke.

Until we saw the paediatric neurologist yesterday for an assessment. The words I will take away from that visit are, "We need to intervene."  and at the end of the session, "I don't know what the future will be like for him, I don't know how longstanding the problems, nor if the gap between him and what's normal will grow but let's begin..."

I was sitting there feeling THANKFUL. Thankful that that feeling never went away but instead was strengthened. Thankful for the friends who listened to my distraught voice notes  did not accept what the doctor said. Thankful for the friend who kept checking on us, asking me how he was, who gave resources that actually solidified my gut feeling. Thankful for the friend who looked around their 'friends' list for help. Thankful for my special needs mom friend-sjoe, long title-who gives suggestions and asks her son's therapists for more ideas. Thankful for the friends who reached out to me who also have children with different diagnoses. Thankful for the friend who would bounce ideas off with me, even doing weird and wonderful measurements of angles when she and I also noted one of the physical abnormalities the neurologist noted. Thankful for the friend who is positive without being patronising or acting as if the problems don't cause much pain. Thankful for the mom I met who put me in touch with a friend who suggested the neurologist... Just thankful.

What's the next step?

We need to see an audiologist.

A physiotherapist will come to the house to start therapy on his gross motor delays -if her workload isn't too heavy. Dr suggested her because she also works with sensory processing disorders, which he is exhibiting.

We need an occupational therapist too once physio is done. (Yes, people do it concurrently but our budget is not able to stretch that much)

We need to start testing but the State doesn't do all tests so we're starting with thyroid tests. Dr's reasoning being that a dysfunction there can cause his issues and also we can treat a thyroid problem so might as well either rule it out or work on it,  whereas if it's one of the other issues, test results will give us a cause but not anything that can be fixed based on the results.

A brain scan depending on how he responds to therapy.

Will see the neurologist in November unless he regresses (loses more skills-he's stopped rolling from tummy to back), unless he gains more unusual behaviours, or unless physio tells her he needs other testing or intervention before November.

What's her feeling regarding what he's dealing with?

A few autism markers.

A definite developmental delay

Sensory processing disorder

A possible genetic syndrome-this is the one the State doesn't test for and because it's not like you can fix a genetic syndrome, so we'll leave it till last.

So that, dear readers, is the plan for now. We still have a long way to go and lots of time to be spent helping our little boy flourish into the best version of himself that he can be.

For now, we enjoy his smiles, and the abilities he does have. He's more than just the deficits, but we can't ignore that the deficits will rule a part of our life and his. So if this blog becomes about the deficits, don't see it as the full story, or that we're living our lives moping about what he's not. We're not. We're just focusing on what he's 'not' (in terms of therapy, not our moment by moment experiences) so that we can help him gain as much he is able to gain.

Life is made up of breakfast, lunch, dinner. Reading books. Changing diapers. Normal stuff. And that, my friends, will not make it on this blog because that's just boring! And not helpful to those who might come across this seeking for ideas and confirmation of THEIR gut feelings.

Friday, July 8, 2016

Hurry Up and Wait!

That's the name of the game.

Someone suggested we find a neurodevelopmental paediatrician. I searched online and found diddlysquat so asked around and was given two recommendations. Both work in the same practice! Called and one is away and the other could be reached via email so I did.

Received forms to fill in, together with assurance that the date we requested has open slots and all she needed was to see our responses to see how long the appointment needs to be.

Filled them in and handed them in on Wednesday.


Now we wait.

Monday, July 4, 2016

Fine, I'll Wait!

I was going to wait a while before taking Lil Guy to see the next medical professional. Money (we've just moved after paying for different inspections and repairs to the old house-things we found already like that but were passed first time round with previous owners) and time have been a big factor, but honestly...I keep hoping we'll wake up one day and the light will be on in that almost-bald little head of his.

I keep hoping there'll be sudden improvement. And that he'll suddenly not hate strangers as much as he does. They make him anxious and angry. The first two times he rolled from tummy to back were in a doctor's offices. That's how bad he gets, screaming and looking at me as if I've betrayed him for letting them touch him. Not something I look forward to doing right now.

Also, I am scared that like most people have experienced  they'll say he's too young right now so all we can do is vague intervention till he's old enough to be diagnosed with something.

Biggest reason for not having gone yet?

My dear husband, "I only spoke when I was two, he'll be fine."

Me: "But I'm sure you babbled and crawled on time. And didn't make weird movements with your hands. And you cuddled your mom, right!"

We were at an impasse. Plus I wasn't desperate to take him anyway.

But  this weekend, we decided we'd take him in the day before hubby writes his next exam. Maybe it had something to do with a father pleading with a boy in his arms to "Please look at me!"

So I bit the bullet and called, ready to get the ball rolling. Nervous...

Except there was no-one at the doctor's office. So, we have to wait till they're open anyway. Which will be on the 18th and who knows when the next slot will be?

I don't mind the wait. But I did want to get a specialist's opinion. I keep hoping they'll say it's 'nothing' and he'll be 'typical' in a few months' time.

The hymn. "Day by Day and With Each Passing Moment" is my anthem right now. Whatever happens, is what God "deems best." And that's good enough for me.

Friday, July 1, 2016

Gays Deserved to Die

Yeah. About that nonsense coming from so-called Christians.

About them saying "more" should have been killed.

About them being called perverts and pedophiles.

My foot.

Who are we to believe that ANY human has the right to go to people who are not harming him at all to end their lives in such a brutal and terrifying way? Who died and made us judge, jury and executioner over other people?

Why do we insist that their anti-Bible lives are any worse than ours? For I can say without a shadow of the doubt that EVERYBODY rejoicing over these deaths is a sinner.

So what makes you better than the ones you're exulting over?

Think of that 18 year old girl calling for help. Pleading. Saying she's been shot. Lying in pain. Feeling her blood pumping out. Pleading for help again as her body goes numb and she loses her eyesight.

Knowing she is dying and no-one has come to help.

Losing her eyesight. Losing her life.

Decided not by the God we all claim to serve, but by a sinful human being like those club goers.

We are not any better than those who died.

God said He takes no pleasure in death and would prefer to have us change our ways. I know one lesbian who decided to go celibate because she found Christ. I know of another one who used to be beaten for being gay but also found Christ and has stopped living the lifestyle.

They found a Christ Who empowers. A Christ Who so fulfils their life that they are willing to be single for life rather than to do what they know displeases Him.

Because they had the gift of time. Time to understand God and to heed His voice.

And here we are, celebrating that someone robbed gays and straight club goers of THEIR time to get to know Christ.

In my humble opinion, that's NOT a very Christian attitude. (To put it mildly)

And we will never how many people we might find in heaven who died gay but having lived up to all the light they knew.

It's our job to mourn with the mourning, not to add to their pain. God help us to stop using His name to bring about more suffering on grieving people.

(Using my phone and I'm sick. Excuses the typos)

Monday, June 27, 2016

The Perfect Child for This Family

One Sabbath, a month and a half after our son came home, I could not take it any more. As we took a walk I told my family what had been bothering me for a while, "I think Micaiah is autistic."

What couldn't I 'take' anymore?

How he was not reciprocating affection. How he was avoiding proper eye contact and the soul connection that comes with it. How he was just not really cuddling and relaxing into my body, and was not showing love. Will share more red flags in a later post.

Later on, as I did my research, I came across a mother who lamented, "My baby doesn't love me." Yep, that's how it sometimes felt.

Long time readers know (I deleted a lot of past posts from 2008 onwards) that the course I studied at UCT was not what I wanted to do. Speech Therapy with its speech pathology and teaching fricatives and bilabial sounds...It's not what I wanted, it was a fourth choice and I quit before finishing. Then I went on to study Psychology, vowing to myself that I would never deal with pathologies and disorders but rather with the counseling aspect, were I ever to branch into the work force, but I kept all my textbooks-Psychopathologies included. Journals included. 

And now here I am, with a  baby with issues affecting areas including speech, who seems to have a pathology of some sort. You know that scripture that contains the truism that "All things work together for good to them that love God?" That is where I sit today. It all works out. It puts my son in the best possible place for his situation.

Researchers studied home videos of children who were diagnosed with autism, asking for videos from infancy until the age of diagnosis. One huge warning for a poor outcome was the way the mothers reacted when their babies pulled away, rebuffed their affection, refused true eye contact. Those mothers who also pulled away, stopped giving out affection ended up with children who required a lot more therapy and intervention, than those caregivers did not give up, even when rebuffed.

Other markers that a child would progress well as constant (as in 24/7) therapeutic intervention in which everyone around the child would participate. With my being a homemaker, I'm able to know for sure that he's always in a therapeutic environment. Also, the children never stopped giving him attention either, even when he would scream as soon as he'd catch sight of them, let alone be put in their arms.

I think it boils down to mindset. Our boy did love us, his brain was just not allowing him to show it. And so we persevere(d) in teaching his brain how to do it.

There are many positive markers that have been shown to lead to a good outcome, but the one I will end with is this. The best outcomes occurred when intervention began when the infants were between 6-12 months. I noticed something was up at 5 and a half months old. Paediatrician (The second one. First one didn't get it) also saw it when I took him at 8 months old.

Let's just say that having a shocked professional say, "But he should have done that at 4 months old!" is both affirming and alarming. Affirming because the first paediatrician totally missed the issues and I did not want to put ideas in his head so left him. Affirming because without even saying a word about my concerns, this second paediatrician picked it up immediately. Affirming because some people just brushed it off, "Oh, children develop differently, he'll be fine," as if I'm a novice at parenting. Affirming because those responses had made me feel paranoid, or as if they thought I was being silly. Affirming because I knew my gut-feel was still working fine,

Alarming because no-one wants to be told that their ray of sunshine might very well be broken, as I alluded in a post. Alarming because it made me wonder if he'd need therapy for years, which would scupper my longing for our last child(ren's) entry into our family. Alarming because I don't know what the future holds. How 'good' is the "good outcome" he's bound for?

I think it's looking good. He's now 9 months old. In the perfect zone for a good outcome. We have a plan. The paediatrician was going to refer him to different therapists last week. Problem is, he can't really withstand strangers. Just looking at most strangers makes him anxious. The older he's gotten,  the more he's aware of who's who and who he doesn't want! He screamed the place down at both doctor's offices. It would be pointless making him go see anyone right now who would try and make him do stuff.

So, we have implemented a plan, a plan I will re-assess at 12 months old. Hopefully by then he'll not be as scared of strangers and hey, might not need them anyway. But for now, will work with diet-changed a few things already with positive results. Physiotherapy at home. Speech and Behavioural therapy with a few psychoanalytic methods thrown in. Might as well use my degree for something, even if it won't earn me any money ;-) (That's a dig at certain relatives in our families who are upset with me for homeschooling instead of "using my education in the workplace." I did tell the one relative who said we'd made a mistake by adopting our daughter, that even if I was done homeschooling, I honestly saw myself volunteering my services somewhere where they are needed, instead of having a career. What better place to volunteer than at home with my son?)

As I said, he's the perfect child for this family. We'll continue smothering him with love, attention,

..and therapy.

Why am I blogging again?

This field, this developmental delay world plus it's possible autism issue, is diverse but I could not find much from parents who were CURRENTLY dealing with infants. Only one blog stood out, from a mother who noticed 9 out of 10 of the signs I noticed when her child was an infant, but she was now writing as mother of an older child. It's not the same. I'm hoping that this will be helpful to others in the same boat. Too often, I've read where mothers' intuition was ignored or ridiculed by relatives or doctors. Where they went from pillar to post until the child was 2-3 years old when finally the medical fraternity took note.

One major issue one autism specialist notes is that therapy has to suit each person's pocket, and because there's not one specific one size fits all solution-seeing as the kids are so unique-parents basically do the bulk of the work. I hope to share the bulk of MY work so that all of us can benefit from each other.

Thursday, June 16, 2016

Yesterday's Conversation

She knew what Bantu Education was and more importantly, what it was not. She knew isiXhosa, seSotho, isiZulu and English. But that was not enough for the government. They wanted the youth to learn at least half their subjects in Afrikaans, the language of the oppressor. The language of the one denying them equality of pay, housing and opportunities. The one denying them freedom to move around the country.

She was already finished with school when June 16, 1976 came. But she knew. She knew what it was like to be a black pupil in South Africa with all the odds stacked against you. And she knew that the Afrikaans rule was yet another nail in the coffin. She knew and cared enough to go and show her solidarity with the high school pupils in Soweto who had decided that the burden was too much to bear. How would they pass when already they were dealing with being taught in English, and now had to be taught in a language that even their teachers didn’t know? And anyway, pass school in order to be what? Tea girls and garden boys? Bantu Education had to go.

And that’s how I begin relating the conversation I just had with my ten year old son and my nine year old daughter when they asked why we’re having a public holiday tomorrow. I decided to make it more real by telling them that my mother went along to march with the pupils. 
“But that’s not fair. Why did they have to learn in a language they didn’t know?” one asked.

I couldn’t give a good reason for it. It was not fair, after all. It was asinine. It was bullying. It was oppressive. 

I told them how they were marching peacefully to the stadium where a rally would be held, and as I spoke, I had to choke back the tears as I imagined those youngsters. They marched on, other pupils joining them, but before they could even reach their destination, the police were there, with their dogs, guns, tear gas and hatred. As I described how the tear gas affects people, my children asked, “But how do YOU know how tear gas makes people feel?” This brought yet another pang of pain. I knew because I’d lived it. I lived the choking, the running away, the police, the dogs, the big vehicles in Gugulethu when the police would come and invade the territory we were forced to live in. I lived the burning eyes and burning nostrils. I knew.

As I told them that my mother, their granny, had rubber bullets in her knee, fired by those policemen, they became agitated. “But bullets hurt. They are hard. They hurt.” I couldn’t disagree. They hurt. They injure. They’ve killed.
And so, with sorrow marking their young faces, my son said, “Tomorrow I’m going to call Granny and tell her that I’m sorry the bullets came.”
So am I kiddo, so am I. 

Sunday, May 22, 2016

My Swansong-the last post.

I cannot apologise for the scenes/pictures in the first video. 

And my question stands...What have we done?

I started seeing a pattern. No responses, or negative responses on brand new adverts. After this screenshot below, when suddenly the language changed, a friend decided enough was enough. She offered to get involved. Needless to say, after I drove all the way there, he never even gave me an application form. And never told me why he didn't.
In March, I wrote to this lady about this property. We were now desperate. We wanted 4 bedrooms but kept getting 'nowhere' so now started looking at 3 bedroom places. She wrote what's below. On April 2, my friend called. She was told she could view it as soon as possible. 
What happened to it not being available at all until the end of April and maybe not till even later? What had happened to "available immediately?"

I wrote to this person 6 days before my friend on the left. 6 whole days...

I meant to write below, "I received NO response..." Not "a response."

I saw another advert by this agent later on. I didn't bother asking her about it. I wonder which poor 'fool' ended up getting this so-unsuitable house.

I called this man on a Monday, asking to see the property that very same day. He postponed for Thursday, claiming that he wanted all of us to wait so we all view on the same day, instead of staggering appointments.. This is the email I received from him the day before this alleged viewing..

Regarding the top video, they died for our freedom. But with us not being allowed to choose..are we really free?
I cannot apologise for the nudity in the top video. I cannot apologise for the scenes of violence in the video, Just like I cannot apologise for my children being chased by a gang of children, stones thrown at them, and called monkeys. 
 As she sings in the song, "I'm no criminal, I'm a good black woman."

But they just see a black woman. As the signs stated, "Beware of natives."
That's what they see when they see my name.

This is it. My last post. I write because that's how my heart talks. But today, I weep. For my children. My children who for the foreseeable future will have nowhere safe to run and play. No garden to dig in, to learn from. No soil. No land.
Because of people like the ones above. 
There is no freedom. It's an illusion. It depends on what you want, and where you want it. Is that really freedom?
My question stands. "What have we done?