I find it really frustrating when people take things that we may do with Isabella or Isabella does, personally. Since Isabella was born and prior to her condition making itself known, we have always placed an emphasis on routine and with Isabella it works. Isabella has been in a routine of dinner-time, play-time, bath-time and bed-time since she was four months old. After her bath Isabella is always ready for her bottle and her bed and on occasion if it has been a busy day sometimes her bath has to be pushed up because she is tired. For that reason we don’t tend to take Isabella out at night and we rarely have her in bed later than 8pm.
Like most people when they are tired, Isabella becomes grumpy. With this in mind we have declined evening events in the past, such as family parties or celebrations. As well as being a little lady who likes to be in her routine, Isabella also is not great with strangers or big crowds of people, as she becomes anxious, nervous and very stiff. She can also get very easily spooked in unfamiliar situations or where there is too much going on.
So bearing this in mind when we visit friends and family we try to get Isabella used to her surroundings first; both the people and the place. We just give her time to adjust and understand that she is ‘safe’ here. We walk around the place and talk to our friends and family members that are there, so Isabella can see that its okay here. It normally doesn’t take very long and Isabella soon recalls that she has been to this place on previous occasions or that she is okay here and she slowly begins to relax. Then when she is ready she will go to people for cuddles. Very often however, before this is allowed to happen, over eager family members will snatch Isabella and take her away from her constant, ie Mummy and Daddy. Very quickly she becomes upset, as Mummy and Daddy are out of sight and she is not familiar with the person she is with or her surroundings.
Usually Isabella can be calmed down very quickly, if she is passed back to Mummy or Daddy. It doesn’t take long for the few tears to shift rapidly into meltdown and inconsolable crying. This then will set the tone for the duration of the stay, so it is best for all concerned for Isabella to be calmed down by either Mummy or Daddy. But certain people cannot see this. They see that by handing Isabella back they have ‘failed’ and that Isabella ‘hates’ them! So they continue to try to calm Isabella down, but this only worsens the situation and Isabella becomes even more upset.
Isabella is very expressive and will let the person know that she is upset by frowning at the person in question and looking for and smiling at Mummy or Daddy. This only intensifies the already stressed situation and it is usually followed by a further, ‘See, she hates me!’. I find this incredibly frustrating, as people make the situation concerning Isabella about them. They can’t see that Isabella likes things done in a certain way and is not keen on change.
We have always maintained from the very beginning that we don’t want Isabella treated differently, for example showered with unnecessary gifts or given special attention over her cousins. Having said that there is an element of special attention needed when dealing with Isabella, such as being aware of what she does and doesn’t like and tending to these needs.
Isabella is now 2 and if she was running around and talking she would be able to tell people, ‘No’. I recall on many occasions when my nieces were smaller and I would ask for a cuddle they would tell me, ‘No’ and run off playing. I didn’t take it personally, as usually they came around in their own time. Isabella doesn’t have the luxury of being able to walk away from a situation she doesn’t like or say no, she will communicate in the only way that she can, which is crying which lets us know that she is unhappy.
The fact that she is not walking and talking I think confuses people and clouds their judgement of Isabella. They still see her as a baby, which she is most definitely not. Physically in what she is able to do she at the developmental age of a five month old, but congnitively she is much closer to her chronological age of 2. Some people still babble and coo at Isabella and speak to her as if she were a baby, much to our annoyance. This is something that we don’t do with her, as she most definately understands and responds wonderfully in her own way when you speak to her normally. When I say normally I mean the manner in which you would speak to a two year old, not how you would hold a conversation with an adult.
Isabella is a very clever and determined two year old and knows what she wants. She has learnt to communicate with us by eye pointing and reaching out for things. She is extremely facially expressive and vocal when the need arises. All Isabella needs is for people to engage with her and be patient with her. It is important for people to understand that Isabella needs to feel ‘ safe and relaxed’ in her environment. Isabella cannot do anything for herself. Isabella doesn’t need sympathy she needs a certain amount of empathy. People need to put themselves in Isabella’s position, if she is in an unfamiliar environment and with someone new or not as familiar she needs time to adjust to the situation. Isabella needs to feel safe in the knowlege that who ever she is with knows she cannot walk, talk or feed herself. Isabella needs to feel reassured that this person understands her and will cater for her needs. In short people need to remember that things in life are not always about them and they need to see the bigger picture.