They Are Not Bad Lucks, They Are Just Special!
How To Train A Special Needs Child!
In Africa, Nigeria, especially ”Ilorin where I grew up, it could be very challenging to have a child with special needs because of negativity of people surrounding you but you should do fine if you’re truly determined!
HOW DO YOU COPE WITH A SPECIAL NEEDS CHILD?
There is no one size fits all answer to this issue. “When you’ve seen one child with a disability, you’ve seen ONE child with a disability”. But, generally speaking, you treat them as individuals just like you would anyone else, only more so. Each and every one has their own disability and their own abilities. They have strengths and weaknesses just like you, but some of their weaknesses may be more severe.
Focus on what they can do, and build on/use those skills. Don’t give them special advantages, but make modifications for their disabilities so the playing field is more level. Give them opportunities to feel successful. Don’t treat them as a “disabled child”, but as a child who needs help doing X. Talk to them, joke with them, ask about their dreams and aspirations, and show them respect, just as you would anyone else.
We had a high school boy at the school where I worked who was born with spina bifida. He was confined to a wheel chair and was going through a time where he was angry at the world. I had severely broken an ankle and had to ride around on a knee scooter. So, I challenged him to a drag race through the cafeteria. I went around the perimeter, but he cut through. Of course he won, and I yelled “You cheated!” We both laughed. He didn’t get over being angry, but he wasn’t such an asshole to me after that.
Get out of the way so they can do as much for and by themselves as they are able, instead of doing everything for them. Teach them to advocate for themselves. And, above all, don’t indulge yourself in pity. It’s the most useless of all of man’s emotions, serving only to make you feel virtuous when it’s actually a cruel thing to do. Don’t go there!! Ever! It’s not respectful.
WHAT MAKES A SPECIAL NEEDS CHILD SPECIAL!
For me, it’s his joy and his affection. Because he experiences everything to extremes – when he’s MAD he’s the most mad ever, when he’s sad, he’s the saddest kid ever, but when he’s SO HAPPY – life with him is always intense. And his joy, over things large and small, is always so very joyful that you cannot help but smile, laugh, and feel joyful as well.
Today, he has been overjoyed about so many things – finding a seagull in his path that looked at him and tickled him pink, getting to write his name in chalk on the playground over and over, getting to pick a sticker on his way out the door for having a good day at school, finding out he was having blueberries with his lunch, and a new Frozen app on his Kindle. His face bursts into smiles so big his eyes basically disappear, he claps, jumps, and at times shakes with joy. He squeals, laughs, yells, and is just so so so happy. Every day, his joys are like he won the Powerball jackpot of epic proportions – but over the little things.
And his affection. I am thankful every second of every day that he loves affection and the human touch. He LOVES people. He loves cuddles. Yes, sometimes he has a tendency to show inappropriate affection (wanting to be held and kissed by the random UPS guy who comes to the door, wanting to hug/hold every little baby he sees, crawling into random mothers’ laps at the park, etc), but with age he starts to learn some boundaries. But with his family, he is full of boundless affection. He hugs and kisses all his siblings. He runs for hugs whenever someone comes home or even if he’s just seen you walk into the room. He tucks himself onto the couch beside me, as close to me as he can get, wedging himself into my side, under an elbow, tucking his toes under my legs or onto my lap. He brings his blankets into the office when we’re on the computers and cuddles onto the office couch to go to sleep near us, or he will tuck himself into his brother’s bed so they can sleep cuddled up. He takes your face between his hands and plants kisses on you or rubs his nose to your nose. He will come up unprompted and tell you he loves you or ask you if you’ve had a good day.
He feels joy and love at superhuman levels, the kind that leave you sitting here wondering if you’re living your life in black-and-white while he exists in technicolor, and his exuberance and love leave you breathless. That’s the most beautiful thing (of many amazing things) about him.
WHAT ARE THE MOST DIFFICULT PARTS OF RAISING A CHILD WITH SPECIAL NEEDS?
Difficult Part #1. The Shock – The sort of autism that my son has is called regressive autism, meaning that he started out looking neurotypical and then later changed and lost his many skills. He was not just neurotypical looking, he was extremely advanced, meeting all of his milestones early, knowing all his numbers, letters, colors before the age of two, turning his head to his name at 4 months, crawling early, talking early, speaking in full sentences and making jokes super early… and then it all disappeared and he went backward. When he was young, doctors said that we had a profoundly gifted child on our hands. Now at almost 8 years old he can barely speak, he can’t read, he has no social skills, he needs constant supervision like a toddler and rather than gaining skills, he loses them. Despite the fact that it’s been 4 years, it’s difficult not to look back and say “what happened?” there was no warning, no prenatal test that could have told us, no preparation. So in that aspect, it’s difficult because I’m constantly trying to figure out “what happened?” so I can undo it.
Difficult Part #2. Dealing with Other People – When my son was finally diagnosed at almost age 5, the developmental pediatrician said to me, “you are an amazing mother – but people in the outside world will think that you are terrible mother when they see you out in person – my best advice is to ‘fuck em’, don’t let them bring you down.” I didn’t quite know what he meant then, but I certainly do now. My son’s autism causes severe sensitivity issues. This means that he feels and sees everything millions of times stronger than everyone else. He sees colors more brightly, he feels sunlight in his eyes more strongly, he hears sounds intensely and he feels peoples’ energies and can read their moods just by sensing them around him. Imagine being out in the world and feeling everything constantly, like the world is trying to attack your body and brain. It’s like being on tons of LSD constantly. That’s how my son feels all the time. That means he can be having a good trip or a bad trip at any given moment. Because of that, he will do things to make him feel better. Sometimes (actually oftentimes) that means throwing things and running away in places like supermarkets. Or freaking out and having crazy meltdowns in public, it means sometimes peeing in his pants or on the ground because he’s so freaked out he doesn’t know what to do. Because there is nothing chromosomally atypical about him, he doesn’t appear different. He looks like a super handsome little boy. And to outsiders, he looks like a brat and it looks like I am a horrible parent for letting him be such a brat. So people will yell at me, strangers, telling me that I’m a terrible mother, how can I let my kid scream (let him? sure – i just tell him to go scream). He also has this thing about throwing – so he will throw things and sometimes they hit cars, people, other things. And of course I don’t “let him,” I watch him like a hawk, but his autism includes some kind of impulse control issue and so if he can get one free moment to throw something – he will. So either I’m restraining him by holding him with one arm while I’m doing my shopping and he’s screaming and people are looking at me and shaking their heads as though I’m abusing him or saying to me, “hey, let go of that kid!” or if I do let go of him, he grabs and throws and then people say, “can’t you control your child?” with autism it’s not that simple. We are working on this, on him learning to throw in a controlled environment but it is a slow process. Autistic children often have great phobias that seem irrational to neurotypical people. Mine is terrified of public restrooms- so either he will wet his pants or he will drop trough and find a tree to urinate next to when we are out and about. Trying to get him to a bathroom looks like we are abusing him. So at places like an airport where we know we have to get him to the restroom because I know has to go and there is no way to get outside, I have to physically carry him and he is kicking and screaming like I am hurting him and people again yell at me or click their tongues, shake their heads. Every single day he does something “wrong” out in public and every single day I get reprimanded for being a horrific mother. People don’t know and people judge. Before I had a special needs kid – I would have made a similar assumption I guess… but people just make assumptions. My own mother-in-law said that he wasn’t autistic, that we were just awful parents. That just made me roll my eyes. He is profoundly, profoundly autistic, diagnosed by several Phd professionals and the school board and two different Developmental Pediatricians. There is absolutely no doubt. Lots of people just say really ignorant things and prefer to judge rather than offer help. However, there are many other people who do offer help and support – even strangers who can look at him and know what’s going on quickly and will offer a kind smile.
Difficult Part #3 The Money – Special needs kids need all sorts of therapies to help them function better in a world that feels so overwhelming to them. And it’s not like 50 minutes a week of therapy – it’s like therapy all day every day from a therapeutic school – then to speech therapy, occupational therapy, behavioral therapy, etc. etc. etc. The costs of these is upwards of $100,000 a year. Yes, there is insurance and public education, but usually your requests for services will be denied again and again and unless you are super rich, you go into great amounts of debt trying to get your services and schools approved. It could take years or it could never happen. There are laws of course, but the modus operandi of most institutions is to wear you down until you stop fighting or you run out of money to fight, so having an autistic child can just drain you financially and emotionally. There is always a fight. I never quite understood about ADA laws. Although there are actual laws in place to protect people with disabilities, they are largely not enforced because it is easier and less money to wait to be sued by people to get their rights than to just follow the ADA laws. Most people won’t sue because hiring attorneys is expensive and lawsuits take a long time.
Difficult Part #4 The Isolation – When you have a special needs kids and all of your other friends have neurotypical kids, it’s likely that their kids won’t really want to play with your kid. So while your great friends from before kids are all off having playdates with each other, you are usually not included. Your kid likely can’t play regular kid soccer or swim lessons or tae kwon do or other things (depending on how disabled they are – mine is very disabled and just cannot do these thing- he is also afraid of other children so he hides or freaks out when he sees them).
Difficult Part #5 The Sleep- Many autistic children don’t sleep – their brains won’t stop moving – so they can be up all night running around your house wreaking havoc. It’s not like you can just go to sleep, you need to watch them. So it’s like having a newborn forever. Often people medicate their children to sleep (which nobody wants to do, but sometimes it’s just the only option) and often, sleep meds don’t even work on these most unique children.
Difficult Part #6 The Challenging Behaviors- Many autistic children have behaviors that can be very, very challenging for their caregivers. A big thing is wandering – where they just leave your house and wander off. That’s why you hear so many reports of autistic children being lost. My son does run out of the house but he stays close by. He has his radius up and down the block that he likes. But sometimes he will do things like open our neighbor’s gate and let their dog out and I get in big trouble with the neighbors “why don’t you watch your kid?” Sometimes you have to go to the bathroom, other times you’re cleaning up a mess that kiddo just made. Locks on doors do nothing because most autistic children are extremely fast escape artists. My kid figured out locks when he was a baby (one of the reasons he was thought of as gifted). My son wakes up in the morning and has this great need to throw large objects down the stairs – he wakes up super early, often before the sun rises and starts taking the house apart. He unscrews coverplates, we’ve hidden all the tools, scissors, etc. but he can make anything into a tool. He will dismantle the kitchen cabinets, take apart the vacuum cleaner, cut the cable/internet wires, take the legs off of couches, take all the food out of the refrigerator and throw it all over the floor, break dishes, throw large plates, pans, mixing bowls- etc. all down the wood stairs. This all happens before 6am. And it can happen in a minute. So let’s say that he has grabbed milk, applesauce, and pasta sauce and poured it all over the kitchen and then comes to wake me up, let’s say it’s about 6am – I get woken by hearing “Mommy – I maded a mess!” in his cute little voice. Then I go out and look to see what the mess is. I start to show him how we clean it up, but it just makes things worse and I am so, so very tired and I have to go to work and so I’m trying to clean it up – while I’m cleaning, he’s throwing the vacuum cleaner down the stairs or running out of the house and opening my neighbors door or throwing things into their yard or throwing things like brooms or dishes into the street right before a car comes because he thinks it’s funny to watch cars drive over objects to make them break. No amount of explaining, yelling, temper losing or discipline will discourage that – it’s like his body is out of control. He also cannot explain to us why he does the things that he does. He’s out to destroy. Sometimes trying to stop him results in self-harm (he bites his arm) sometimes he will hit me or bite me or his little brother, but he tends to be more violent to himself. Many autistic children tend to have more violent and assaultive behaviors. A few friends of mine with autistic children had to hide themselves and their other children in a room while their 8 year old stood outside the door and pounded on it with a knife. Testosterone and puberty get really tricky when your brain feels out of control. Many people have problems with fecal smearing – where their children will smear their feces all over the walls of the house. Many have kids who won’t potty train and have 8 year olds in diapers. Mine will use the bathroom in our house. There is a lot of violence and frustration in living in a world that doesn’t understand or accept you and when you can’t verbally explain this – sometimes behaviors will do this. Behaviors are communication. But for parents, it’s very difficult to deal with this when you also have work, other children and other things to manage.
Difficult Part #7 – The Bullshit Ending Where You Say you Wouldn’t Have it Any Other Way. The mythology is that someone with a special needs kid would say, “God gave me this angel and I wouldn’t change him for the world – I wouldn’t have it any other way!”
I love my sweet boy so much – and I also love his little brother who is mostly neurotypical but probably ADHD. But ADHD is nothing compared to profound autism – nothing. However, if I had the choice and could have it any other way, I would. His disability makes his life extremely difficult and it makes my life extremely difficult as well.
That said, I do feel that it is my path and my dharma to love and raise this very special child and I do my best to love him with all my heart and to take care of him to the best of my ability and to grow as a person, to learn unconditional love and patience. And so even thought it’s very difficult, there is a specialness to the situation that has helped me become a more compassionate, more loving and more patient human being. For that I am very grateful and every day is a new practice in going deeper into myself as a human and finding all the love inside of me to give to my children and to the people around me. It’s not just having patience with my son, it’s learning to have patience with people around me and not get angry – but to kindly and compassionately explain to them what they are seeing.
WHAT TO DO?
1.parents should accept the reality.
2.Treat them as normal as possible
3.Should not repeatedly discuss about the disabilities with others
4 should not call with a branded name
5.Should get more awareness about the specific disability of their child. For ex, autism, Cerebral palsy etc.
6.Should meet a Special educator and plan his future accordingly
7.They can prepare a model resource room for their vhild in their home.
8.If there are any physical defects try to rectify them medically .
9.whole family should support the mother.
10.Both wofe and husband should share the responsibilty.
Of all the above LOVE your child.Love plays a major role in bringing up a special child.Then he becomes Really Special for you.!