When Gifts Come Wrapped Differently

I don't think I've ever taken the time to discuss the mini challenges we face as a family with a child with cerebral palsy and these things may seem trivial to others but they are actually things we have to put a lot of thought into.

The things you probably do not have to think twice about every morning, is a full blown migraine for some of us. So I'm about to share the nitty gritty stuff, the tips may help you understand life with a child with special needs and maybe even push you to be a little proactive:


Birthdays

This is usually a no brainer for most parents with regular kids, but for us special parents especially in a developing country, organising birthdays can be a huge challenge. In my case, doing a party with loud music and older kids running around is a huge no no. The loud music can cause seizures and make Giovanni very uncomfortable. Bouncy castles won't be beneficial to him but only guests. He basically won't enjoy himself. He however likes story time, music and games. This means that attending birthday parties can be a challenge, if the music is too loud and most likely there would be no activity Giovanni can engage in.

Gifts

I really don't know how to tell  people sometimes what to buy for Giovanni. People love to buy him shoes for example but unfortunately Giovanni cannot wear regular shoes like other children. He wears AFOs or special orthopedic shoes. Even clothes are a problem, all his clothes need to be soft; jersey like and comfortable. Not too rough on the skin and EASY TO WEAR: I cannot stress more on this point. Buttons, zips, slim fit trousers can be cumbersome for us and we always have to brainstorm when looking for clothes for him. I always appreciate when people make the effort in buying him things but I always try and guide them on what to buy. Elastic waists for example are awesome, they are easy to put on and take off. Toys are the most difficult. This christmas, that faithful question came about, "what should we get for Giovanni?" and that faithful puzzled face of mine would show without fail. Hahaha!  Every child with special needs is indeed different, so with Giovanni anything with music or lights and that can be operated in a very simple manner and that can stand on it's own is best (he isn't able to hold anything with his hands YET). I think the word YET is going to be my most used word for 2017. LOL!

Access

If we are going somewhere or have been invited somewhere, I always have to go check out the venue to see if it's wheelchair accessible or whether I have to use the baby carrier. Meanwhile the little dude is getting heavier. But most of the time, we are obliged to use the baby carrier, because many places in Accra aren't wheel chair accessible.  Many church parkings do not have "disabled parking" and if they do, when I park there, Giovanni isn't considered as disabled because I carry him or because he is still seen as a baby. "Disability can only be seen"-This particular narrative on disability has to change by the way (another topic for discussion for another day). Speaking of access, my own car cannot take Giovanni's wheelchair and so when the need arises I borrow a bigger car if we are going somewhere and he would really need the wheelchair. For now at church, we improvise and he just sits on my lap or daddy's lap.

The White Rabbit
Oh my gosh! Ghana Man Time - GMT does not work for us at all. Ghana Man Time simply means you will be about an hour or two late. Giovanni has a routine, so the moment there any delays and a break in routine, dude's moodiness shoots from zero to a hundred real quick. Organising meet ups with friends or family can be the most challenging. My 3 is 3 and their 3 is...well 4 or 5 or 6! This doesn't work in our world. I am like the White Rabbit in Alice in Wonderland when it comes to time. No time no time. :)

"This is the Way we Brush our Teeth"- Dental Hygiene
This should have even been the first point. Brushing Giovanni's teeth is like war. He will clench his teeth and when you put the toothbrush in he will bite the toothbrush. I used to use a finger toothbrush until he started biting my finger. I then used the electronic toothbrush and that frightened him and didn't brush too well anyway. So I advised myself and now use a normal manual toothbrush for kids. Which I should have done even in the beginning (sometimes we think too much).  He still bites but we manage.

Being Politically Correct
Someone referred to Giovanni as a patient once, and no we weren't in the hospital, lol. People think our children are sick and so for lack of a better word they call them patients. lol. Jesus take the wheel! lol. Let me help you out a little: my son is not a patient, neither is he a cerebral palsy child, he is a child WITH cerebral palsy. He is a child first before any other condition. And you can practise with any other special needs condition: another example is "autism girl" it's a NO NO NO, she is a child WITH austism. Please don't be lazy about it. We get very offended when these mistakes are made. But you see now I'm correcting you, so just learn and practise ok? People approach us and apologise or want to pray for us. I appreciate words of encouragement and I appreciate conversation, but I certainly do not appreciate condescending remarks like you feel bad for me.

Foooooooood
Most kids with spastic quadriplegic cerebral palsy aren't able to eat regular food. Everything has to be blended smooth. In fact some kids are even tube fed. No we cannot up and go like other parents and grab something from the mall or pass by KFC. We always have to carry Giovanni's food along, that is why timing is everything. Routine has become a norm. This special mama job isn't for the faint hearted or lazy. lol It requires hours of food preps every week or every 10 days. It requires research and creativity. You become your child's personal nutritionist.

So again I've given you a little peep show of the nitty gritty stuff that bombard a special needs mama's life day in day out! Things sometimes other parents don't really have to think too hard about.

I've recently heard that I make too much noise about my son, well if you don't like this blog and you don't like my posts, please why are you following us? It's a simple question, that requires a simple action. You have the choice to read it or walk right passed it. In fact you can close your eyes and go watch some tellenovela instead, if that is what interests you. This blog is the way I release stress and it's the way I like to communicate our everyday living and increase awareness on living with a child with special needs, so that those who want to learn will get educated and spread the word. I heard recently that a friend was struggling to have a child and decided to adopt, the moment she was told the child available for adoption was deaf, she took the child back to the orphanage because he had a disability. Now I cannot judge her but I can only increase awareness through this blog and through my write ups that every child is important and unique and you need to accept what God gives you and use this gift to glorify His name. Gifts from God come in special packaging sometimes and we must consider it a blessing.  They may come packaged differently but what matters is what's in the inside. :)

I'm not slowing down in 2018, in fact we will try our best to pick up speed so that more awareness will be raised, stigma will be reduced and government finally puts policies into practice concerning children with special needs and their families.

Merry Christmas Everyone!