I missed out some details from the last chapter. So you will prob find I go back in time sometimes. Lolly was a naked child, she hated being dressed. I didn't realise why, but I knew she loved to be naked and free. Everyone used to tell me to put her clothes back on but there was no point. She would just take them off again. She wouldn't entertain the idea of a pretty dress, it was more boyish clothes she liked, tracksuits are her fave or Pj's.
She changed her clothes about 20 times a day! Was always upstairs getting a new outfit! It was damn frustrating, her drawers were always a mess I was washing her clothes all the time. I had so much washing, it was unbelievable. Eventually we found what worked and what didn't and she learned to choose her clothes herself. We have a drawer full of stuff she will not wear and a few outfits she would wear until she was 26 unless I hid them, or "accidentally" ripped them up so she couldn't wear them! She has been in the same school trousers since year R they were getting to the point where they were digging into her sides and ankle swingers are an understatement. End of term I threw them all in the bin so she now has to wear the "new" ones I brought a year ago!
She will not wear tights, or leggings, (unless for bed) no idea why that matters. She likes jeans or tracksuit bottoms or jean shorts. I have only got her Into a dress on special occasions but I still take that spare comfortable outfit I know she will want to change Into once she's had enough.
She was naked for a reason and that's because she hates the feel of clothes on her skin, the tags at her neck used to cause her massive rashes she was that sensitive. Certain materials hurt her. Imagine someone brought you that beautiful soft looking fluffy jumper for Christmas and you tried it on and it was scratching your skin so much you couldn't wear it! Most clothes feel like this to Lola and so I just have to trust her and let her wear what she wants. I didn’t always feel like this, it took me a long time to get to the point where I can get over the frustration that her symptoms, traits cause me. I used to get so angered at the amount of clothes she was getting through, or the fact I couldn’t dress her how I wanted or that she was so independent.I don't care anymore if she looks like a tom boy in a tracksuit and her hair is all messy because she's sensitive to the brush, or her face is unclean because she hates being wiped. She's comfortable and happy so leave her be I say! I don't fret. I don't care what people think, if she's happy, were all happy. She learned to be Independent from a very early age, she was washing her own hair shampoo and conditioner, she was dressing herself, she was choosing her own clothes, she was wiping her own face, and choosing her own clothes, by age 2 easily. I do have those odd moments where I feel sad about the path we have to take, but those moments are few and don't really last for long to be honest. She's such a courageous little girl and I admire her so much. She is strong, and confident, and I love her with all my heart!
Lolly doesn't know her own strength, she's very heavy handed. We got a kitten, and She used to pick him up and carry it under her arm like a baby she never left it alone. It now hates her. Anyone ever remember that story of Lenny and George? That's My baby! The same with others too she pushes too hard, squeezes too tight, if she's in the bath with you and she's washing your back she's use her nails but she will get harder and harder, she loves this type of feedback that the sensation of scratching is giving her.
Soooo we had a new baby. S was besotted although a few nights in I heard him get up and slam his bedroom door haha. Lolly just thought she was a dolly and that she could pick her up when ever she wanted to, I had to step up my vigilance now. I could not leave Baby alone for a second. I either had to make sure I took Lolly with me wherever I was going or that I took Babyx Even to the toilet, I had to take Lolly with me. I couldn’t even pee in peace, all day every day one of them was by my side.
Lolly was going into pre school, S into year 1. They went back to school two days after I gave birth and I was really poorly with a womb infection and mastitis, so was pretty much laid up not doing much, Kenny took them both and I was gutted to be missing Lolly on her first day. Turns out she was fine, she ran off quite happily. It was after about a week, she realized it was long term and she screamed and screamed, she didn't understand why we were leaving her. I know they don't really understand at that age anyway, but Her world was different, she was entering the unknown, people didn't understand her and we did, it scared her. She didn’t feel safe and her behavior deteriorated. Her communication was limited, but because she was so young everyone just put it down to her age and that she was still a baby. The pre-school noted a few things that was of concern, and that was that when she hurt herself she wouldn’t talk to anyone, she completely withdrew into herself and became mute. It worried people, a lot especially if she had bumped her head. You were a very special person if Lolly felt safe enough to reveal her true feelings to you when she was hurt. They also noted that she didn’t play and her attention span was only 1 minute. They couldn’t get her to engage, she would only do things on her own terms and she would constantly flit from one thing to another and never settle. Lolly loved to sing, it was her favorite thing to do. In fact she sang better than she could hold a conversation. If she spoke she used one-word answers. She was constantly disruptive and used to snatch a lot off of the other children and draw all over their work. For a Christmas present the the school staff brought her a book called “the naughty sheep” how ironic. I always wondered if this was a dig. But then I just think I’m being paranoid. 😉
Her appointment came around quickly, We arrived in time and sat in the waiting room, She went into the little play room and closed the little gate behind her, it had a little lock on it and she just stood there opening it and closing it back up. We were called in and the paediatrician took an extensive history of Her and our family background. Moo ma, was very poorly she was 10-11 weeks old and she had a chest infection. I mentioned this to her and her comment to me was “well you should give up smoking then” I was mortified. She spoke to me Like I had endangered my baby on purpose and that I smoked 20 fags inside the house! I was still reeling when we came out of the appointment. She noted all of Her history and they done some games and gave Her a medical examination.
Here are a few things I forgot to mention before that I just read in the report.
1. Lolly Loved bath time.
2. When I was pregnant I couldn’t take her to the toilet all the time so I had to start counting for her and this became a habit for Her and in the end she wouldn’t go upstairs without me counting for her.
3. She was addicted to undoing and doing up buckles, on high chair and buggy etc, then zips and poppers.
4. She didn’t like peek a boo as a baby, but at three years she enjoyed it like she was a baby.
5. She used to talk to you looking up at the ceiling, like the Black sheep video.
6. Lolly. used to wake up singing. ( beautiful)
7. She would walk on her tip toes.
8. She used to lay on the floor and push cars to and fro whilst watching the wheels move.
9. She still used to choke at this age whilst eating dinner.
10. She used to eat or lick everything and anything. She used to eat non food items.
So at this time, her Speech and language skills were assessed and were found to be age appropriate, She demonstrated nice joint referencing, pointing and a variety of intonation and facial expressions and gestures. She “attended very well to the toys” She was chatty and played with dad.
I told her that She woke up screaming every single night and seemed to be in absolute agony. She told me the it was without a doubt night terrors. I knew it wasn’t, id been there and done that with S, I knew what night terrors looked like, Children looked frightened, scared. Not in agony, sweating. couldn’tcommunicate what was wrong but was most definitely awake whilst she was crying. I only found out that she had hypermobility when I received her report. Why hadn’t she told me? In her report it says“she is however very hypermobile at the knees, ankles, fingers, hands and hips.” Did I not need to know this? I could have had questions about it. I did have questions about it. Many in fact, but I never got the chance to ask them because later on in her report it goes on to say
“WE have agreed the following plan”
1. Find a parenting programme for the parents to attend.
2. I have discharged her from regular paediatric follow up.
WE did not agree any such thing, in fact discharging us was news to me. So I had no choice, I had to google. I googled Hypermobility and found that her night time waking was probably due to her pain. So I went back to the doctor and complained about being discharged and he got in contact with her, she took it to a panel of people who decided based on her findings that She did not need to be reviewed. These people haven’t even met Her, None of them had even met me. What gave them the right to decide that her symptoms weren’t severe enough to warrant a review. She did get a review in the end, I Complained so much that they referred her to the consultant.
It also says she has excellent social communication skills, and that she is just an extreme version of normal. HUH what the hell does this even mean.Apparently she does have some tiny little traits but these will either become more prominent as time goes on or disappear completely.
So it was all my fault, I had a naughty child, I was imagining that she had something neurologically wrong with her. I needed to go on a parenting course to learn how to handle my three year old. They were forgetting I already had another child who had no behavior issues at all and I had brought him up perfectly. (well at that point)
I was so upset. I cried on the way home. I was angry, distraught, She had embarrassed me, made me feel really really small. I thought that was the end of it. We just had to carry on and deal with it. No one believed me. Ill just go on a parenting course and learn some discipline strategies. Yeah right!!! That was never ever going to happen.
I was deflated at this point. I left it. I thought ok ill give this a go. Ill see if I can turn her behavior around using neuro-typical behavior strategies. Ill jump through their hoops. Turns out the consultant we were referred to for her hypermobility was an absolute legend!!!!!
To be continued.......