‘Not so’ Special Assistance

Isabella is a seasoned little traveller; she has travelled by car, boat and train, and she is most definately a ‘Frequent Flyer’. She first took a flight to Germany when she was just two months old and she was an angel. Since then she has flown to Portugal,Kefalonia and 3 times to Bahrain in the Middle East and all this before the age of two!

 Our most recent flight to Bahrain on Wednesday was probably the most stressful and it was nothing to do with Isabella. We (myself and Isabella) had previously flown with Gulf Air for the 6 hour flight to Bahrain. This time we flew with British Airways as it was £500 cheaper, but it felt 500 times more stressful. I requested Special Assistance in the UK and explained in detail about Isabella and her condition. I also explained that her buggy was a specialist wheelchair and that it was heavy and came in two parts. I also told them that it would be the first time we would be travelling with her car seat as she turns 2 on the 19th April and cannot sit unaided so I would need help fitting it and explained that it was heavy also. The lady was very pleasant and assured me that I would get the help I needed.

On arriving at the airport we checked in and were told to go to the special assistance desk. We had arrived early so we could have breakfast with my husband Paul, Isabella’s Daddy.The lady at the desk told us that we would have to take the assistance now as she couldn’t guarantee she would have anybody to help in an hour’s time! So we had to rush our goodbyes and were escorted through security and passport control. The man who helped us was very polite and helped carry my laptop bag and car seat whilst I pushed Isabella with the change bag.

We arrived at the Special Assistance Room. I was confused, as I thought I would be taken to the gate. On arriving at the so called Special Assistance room, a very cold looking lady threw an icy stare towards myself and Isabella and proceeded to ask why he had brought us here. He explained that I needed help with the car seat, she told him that it is a parent’s responsibilty to carry what they have packed! At this point my blood was boiling and I told her that my Daughter was Disabled and I wasn’t able to manage with Isabella in the buggy and a 10 kg car seat! She then radioed over the the desk in the main terminal to see if the man could take me to the gate, he wasn’t able to as he was needed back! She then abruptly told me to take a seat. At this point my stress levels were beginning to rise. After sitting waiting in the room for what seemed like an eternity I was then asked to collapse the buggy to go onto the Disability bus! I wouldn’t have minded but it was ridiculous. Isabella and I were squashed into the back with her buggy and car seat, an elderly couple were asked to hold Isabella’s seat from her buggy as it wouldn’t fit in the back with us. I told the girl several times it was more difficult than ever and I could walk with Isabella. I just needed help with the car seat. She said no we will get you on don’t worry! So we sat squashed for the ride to the gate, where on arrival I was asked to put the buggy up again. One thing I forgot to mention is that we had only had the buggy for just over a week and was still getting used to putting it up and down. Feeling flustered I couldn’t get it up properly and they were now starting to board,and people were queing up behind me, so I carried Isabella pushed the buggy and slung the laptop bag on my back, whilst the driver of the Diability bus was sliding Isabella’s car seat along the floor with her foot! I wanted to scream. She then collared someone to carry the car seat, who did so grudgingly. I was then asked to collapse the buggy again and by now I was hot, sweaty and extremely agitated! Isabella screamed, as she is not good with strangers, whilst I struggled folding up the buggy. Finally I did it, took Isabella back and made my way to the aircraft, with the guy helping me dragging his feet behind me.

 I approached the aircraft door and told the not so smiley Stewardesses that I was in seats 28D and E and would need some help with car seat. Instead of a response like, ‘Absolutely no problem.’ I got ‘Have you paid for the seat?’ Right then and there I wanted to slap the cheeky cow around her face. I refrained and told her apruptly, ‘My daughter is disabled and I have just about had enough this morning.’ She took the car seat off the unhelpful man and proceeded to moan about the weight of it. Heavy I thought I will give her heavy, as I was making my way down the aisle with the laptop bag, change bag and Isabella! Listening to people tutting as I knocked them with my bags.On arriving at the seat she said, ‘Oh,they have checked you into the middle seat you have to be in a window seat with the car seat!’ I was fighting back the tears and trying my hardest not to lose my cool. She must have seen this as looked at me and said she would go and check. At this point a much friendler steward saw me and quickly took the bags off me and put the car seat on the middle seat. I sat there cuddling Isabella wishing I had Dorothy’s red slippers and could just click my heels and be in Bahrain. She came back and said that I could stay in the seats that I had booked.

Slowly I began to relax and sat Isabella in her seat, she loved it and was a star for the whole journey. The lady sitting next to Isabella was lovely and was interested in Isabella and her condition. She asked lots of questions and was very nice. She watched Isabella whilst I went to the toilet. It was a pleasurable experience, as I normally have to give her to the stewardesses and she loses it.

Although the car seat worked a treat and feeding and entertaining Isabella was a breeze, I am concerned that on future flights if Isabella is still unble sit there will be no room for her car seat as her long legs were almost touching the pockets. Thankfully on this flight she had a little boy in front of her so he didn’t recline his seat, had it been an adult she would have been squashed. Similarly her feet were touching the wall when I was changing her nappy, so that is going to become a bit more tricky on future flights.

Like everything though Isabella and managing her condition is not the hardest part, it’s other people and the difficulties that they create by not fully understanding the sitution or not doing their job properly; But that’s a whole new blog in itself!

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Hello world!

Paul and I couldn’t wait to start a family together, seeing the words ‘Pregnant 2-3 weeks’ was the best news we had ever recieved. Before entering the world our baby was affectionately known as ‘Peanut’. On the 19th April 2010 Peanut finally made her appearance and became Isabella making us the happiest parents in the world. She weighed in at a whopping 9lb 5oz, with the biggest blue eyes you have ever seen. Although perfect to us in everyway, it became apparent after 4 months that not everything was as it should be. Isabella who was now known as Monkey had rolled over but was doing very little else.  We pushed for a referral from the GP and finally got one at six months, but it would be another 5 months before we got to see a Paediatrician. On the 7 March 2011 our deep concerns and doubts were confirmed and we were told that Isabella had probable Cerebral Palsy. Over the last year Isabella has undergone an MRI Scan, Lumbar Puncture, several hopsital visits and various blood tests, all of which have come back negative.  The Doctors are puzzled as Isabella is a mystery to them. At nearly two years of age Isabella is unable to hold objects, sit, crawl, walk or speak and currently remains undiagnosed.  Despite everything Isabella is the happiest little girl that we know and she is extremely determined. She is the apple of our eyes and we treasure every day we spend with her. This blog is about the up and downs, the smiles and tears, the battles and triumphs we as the parents of a undiagnosed disabled child have gone and are going through…