Five Years Old

As a parent your number one job is to never give up on your child and to be there for them in anyway you possibly can. You expect the first year to be exhausting. There are the wake up calls throughout the night, the feeds roughly every 3hrs, the diaper changes, the mobility issues, the inability to communicate their needs, washing, bathing, dressing, absolutely every task up to you. Your child is dependent of you in every way but throughout that year you receive the payback of watching them learn their names, roll over, sit up and eventually crawl. You see all of your hard work pay off and think "my child is growing up too fast".

At age two you expect different causes for exhaustion, your child hopefully becomes mobile, hopefully develops languages and can begin potty training, learns to feed themselves, but then there are the infamous terrible 2s. "my child won't be quiet for just a second", " my child won't sit still", " my child wants me to go to the potty with her/him every time she/he goes", "my child expects me to clap after every mouthful she/he feeds himself"; so many times we complain once we get past the triumph of their achievements and they fade to become just another hassle in our life. Independence seems to be more tiresome than we'd imagined.

By three however you hope they've mastered these tasks, they become less needy of constant acknowledgment and incredibly proud of how well they can manage without you. They want to do everything themselves now, they wash their hands, take over parts of the bathing process, dress and undress themselves. They have more friends than we do. These little people have come such a long way from the baby you brought home from the hospital and maybe you decide to have another or perhaps you are expecting a new arrival shortly. All in all at age three the number one complaint I hear is "she/he isn't a baby anymore, he/she just doesn't need me anymore", we of course know that that is not the case but it becomes our newest complaint.

The time flies by and their personality continues to develop. This little person has a mind of her/his own and the friendships that may have developed from playing on the playmat to expecting their little friend at every activity become proper friendship. The dependent nature of a two year evolves and these three yr old children no longer have to be around each other constantly to consider themselves friends, and by four they may have decided they do not wish to friends because Josh would wants to dance while Terry likes playing football, or Sarah much prefers her music classes to Jessica's art ones. Accepting their altered friendships becomes something new for us to stress over as now the friendships we've made with other parents have been altered but we get on with it because it's our job.

At five years old we cry as they put on a brave face and go off to big school. Many may bypass this stage if their child attended preschool although proper school usually is enough to make any mother shed a tear and every daughter's father's heart tighten. "they really don't need us like they used to" becomes the most difficult idea to digest. It sets off pangs parents didn't expect until teenage years that have just been waiting to creep up on us. It changes parents...I've listened to these complaints for years, I've watched the genuine concern, exhaustion, pain, and would have probably been every bit as guilty of everyone of the selfish complaints they've all fed me if things were different. I can already see myself lacking deserved praise try near three year old justly deserves.

The last five years have not followed this script as it won't have for so many others. At 18months into the life of my first born my world changed completely. Little worries that something just wasn't the way it should be became prevalently just. Yet for a year a part of me still hoped I was wrong while the rest of me fell apart at the realization that nothing I could've done would have made things different. Nothing was going to be the way I'd imagined it would and that I was going to sit and watch so so many people undervalue the achievements I longed my first born would one day accomplish. I was going to sit and have my heart smashed to pieces everyday while everyday someone would take the little things for granted.

As a parent your number one job is to never give up on your child and to be there for them in anyway you possibly can. Being there for my not-so-little-anymore girl that means still guessing what my daughter needs because she can not tell me, sign or picture exchange even after two years at a specialist school; it means dressing and undressing her, picking out her clothing, tying her shoes, bathing and washing her, changing her diapers, feeding her, brushing her teeth. It means a hell of a lot more laundry then most because she is doubly incontinent. It means sleepless nights despite medication and challenging behaviors so many parents are lucky they'll never have to even imagine. It means kissing any security deposit goodbye because she just can't help herself, having my hair pulled out, occasional bites, scratches and constant bruises on my arms and legs.

It means some some summers when it's hot and I wear shorts and a tank top people think my husband beats me because no one could ever imagine a 3, 4,or 5yr old causing the injuries I seem to have inflicted by someone who quite clearly posses a load of strength.It means inventing your own unconventional gift lists for birthdays and christmas, and my heart breaking because she has no real friends of her own and constantly rejects the affection her little sister tries to give her.It means talking to her even though I don't know if she can understand or hear me. It means dealing with staring and using every bit of strength in my body to keep from busting some ignorant bastards head in on a near daily basis, and finding somewhere to sit and cry it out every day to be able to manage the number one task of never giving up. It means that I always feel guilty for not doing more even though I am giving her everything I have to give.

If you look at Ginny you will see an  achingly beautiful, playful little girl with a smile that could light a pitch black alleyway. If you look a little longer something will start to seem off. She won't act the way she looks, she won't seem normal anymore and your eyes will look again and again searching for a physical defect to defend her, to make things easier on you(not her) so you can say "aw bless her she's disabled" but you won't any physical reinforcement for what you already know but brush off as a naughty child because you cant find the "proof" you need to accept it. Its not your fault, its the way you've been programmed from birth and if you're life has not been touched by her invisible disability or you haven't studied or worked around it than you are just one of the many who know nothing about it or only as much as the television has told you.

Once you hear her diagnosis out loud you will make stupid comments because of lack of knowledge but it's not your fault and I don't aim to belittle you by mentioning it, just like every other parent of a child with this condition I want to help make people aware of the truths and generalizations about it.The way her doctor put it a child can go from seeming completely normal, playing, talking, doing everything a neurotypical child would do and then regress, and because of the severity of my child's condition she finds herself lost in a fog where perhaps the little girl that used to speak, play, dance, and sing is lost. This idea pains me the most. The idea that she may be stuck inside of herself and unable to skim the surface. It seems so wrong that any child should be lost in such a way and every day I wish I could swap places with her so she could live her life outside of her little head and I could be the one trapped.

My daughter was in no accident, she was just born wired differently and one day it's like a connection snapped her connection to my world was lost. We don't give up though. Not a day passes where we don't hope, wish, dream and pray that she'll find her way back to us and in this, her fifth year we've seen progress. With the new accomplishments time bring unfortunately new challenges do arise. Ginny gets taller, stronger, harder to manage. The little things she does evolve and suddenly you don't have a little girl who will eat a pencil if left unattended for a minute but one that will make a hole in the wall eating it as she goes along. You get a child that no longer needs to climb because she can reach the top of all counter tops so now climbs to get into upper cabinets. This last year we have had to find new locks for all our doors, ones that are worked from just over the door so she can not reach them. Safety gates have had to be removed because she could get over them too easily and now even our enclosed garden is no longer a safe place as she has managed a way over our 6ft fence to climb out.

Many people find they have an elephant in the corner that causes stress in their household but at ours he fills it and we spend most of our days trying to squeeze past him to move around. His name isn't "wetting the bed", "fussy eater", "redundancy" or "baby weight I've not shifted", our elephant's name is Autism and he is always going to be there. He might grown leaner one day but for now he keeps us all just trying to find a way to live our lives despite the lack of space for ourselves with him around but we manage. Somedays barely, but we do, always keeping to our number one job and parenting as best we can.