It's a song right? Some of the lyrics fit really well into how I feel about life, it's like a big jumbled up puzzle of it, only some pieces are inside out and upside down so it doesn't totally fit together!
7years and 9 months and four days ago I fell pregnant, We were elated. I'd miscarried the month before so things were tense but my little bean stuck! We spoke about names, and spent a fortune on clothes and nursery things and feeding equipment. We talked about our hopes and dreams. I imagined having a little girl, buying pretty dresses, and plaiting freshly washed hair. Having little pretend tea parties and play dates with other families. We imagined holidays with the children. Going on shopping trips for clothes and party dresses. It was so exciting! A new baby. I already had a boy, would this be my girl? I hoped so!
Pregnancy was long and tiring. But at 8:50pm on the 30th July 2009 my gorgeous princess was born 4 days over due weighing 5lb 150z and she was absolutely perfect! She was adorable. She was bald. And she was tiny!
I've written a series of blog posts before on the chapters of our life with little lolly and how hard those first few years were. Things were very strange. Nothing was normal. She couldn't even keep down a bottle.
We struggled with Lolly from day one. And when things didn't change and she grew in size, but didn't seem to follow in all her milestones grief struck me big time. I'm not ashamed to admit that I wondered where my princess was? I didn't sign up for this child? She was angry, violent, confusing, and never happy. I couldn't take her anywhere at all. Driving was so stressful, we couldn't go on holidays because it was a danger to everyone. I could only make short journeys and even those were very difficult indeed.
Why wasn't my baby happy?
There were no pretty dresses, no shopping trips, and certainly no freshly washed hair with plaits! In fact I couldn't even touch her head. I knew what was wrong and it took me two years to finally convince everyone else. But still I grieved for that other child, the one I could take to the movies and sing songs happily with, the one that would help me cook. My princess!
But the bond we had was astounding. Sometimes suffocating. But wonderful all at the same time. We were one, we understood each other. I knew her mind, her soul and I felt her pain and her suffering. I would know what she wanted with just a look, or a turn of the head, I had to stop myself finishing her sentences because she was delayed with speech and language, instead I had to use encouragement and guidance. I HAD to help my child. Instead of longing for my princess who quite honestly must have got lost, (someone must have given her the wrong directions or something) I had to understand and guide her, and everyone else for that matter.
I don't know when I stopped grieving for my princess. I honestly can't remember it was a very long time ago, probably about the same that I lost my sanity. But I don't grieve about pretty party dresses anymore, or plaits, or going shopping for clothes. I indulge us both in other ways! I indulge her obsessions. we don't buy toys, and normal things for birthdays. Birthdays have consisted mainly of sensory toys for years. Sparkly night lights, weighted blankets and silly putty. Let's face it there's only so much you can have right? This year her stationary obsession has been well and truly indulged and I'm so jealous.
I still wonder sometimes what it would be like if I had my little princess, only briefly, because then it hits me. I DO have my princess. She's here with me, she is beautiful, and kind and thoughtful and loving. She is funny, energetic (my god is she energetic) has the most Infectious laugh, and is so endearing and innocent that it melts my heart. My princess didn't get lost, she was just made differently. It was me who was lost, lost in grief for the "normal" all those things in the first paragraph. But this is my normal now. I'm actually quite used to it. It's hard work but she is who she is, and no amount of grief is ever ever going to change that. But it's ok, to feel grief is normal. Grieving helps the process. It helps acceptance and it helps us to become who we are, to love unconditionally. It's ok that she needs Lots Of Love and Affection. Because every child does. And that's normal! 💗
So to those of you in those first stages of this pathway that will lead you to your own normal, grieve away, because once you get there you'll understand that it's ok! 💗
And to my beautiful, funny princess, a massive happy 7th birthday! We love you no matter what. 🌺
My sister loves me! No matter what!💗
The siblings of special needs children need special praise and attention for all that they do and have to live with.
Let's call them sibs! Now let's face it, sometimes there isn't enough time in the day to show these little Ray's of light and hope how much they actually mean to us and the special needs child in particular. Most of time were too exhausted to remember how much they have to put up with, or how much they need to help out. Sometimes we don't even see what they actually do as its just the "norm" in an un-normal life!
Sometimes even the rays of light and hope have special needs. Sometimes their special needs get overlooked due to one child needing so much 1:1 it's impossible to spread yourself evenly and fairly!
You might be in a position where you have two or more children with special needs (like me) I won't list all of the diagnoses we have as a family but let's just say there are a lot. Two have diagnoses of autism and other things and one is on the assessment list. So you can imagine how difficult it is when you have one with quite high needs, and two others that alter between having genuine bad days themselves and being an utter gem! I find it alternates between them when one is having a particularly good day the other is at a peak of high anxiety and hard to control. (For want of a better word)
Sometimes these little helpers get forgotten, told off for things that are particularly minor to what their big or little sister has just been calmed down for, or sometimes they even calm the child down on their own. My little moo ma never fails to surprise me. She is considerate of her big sisters feelings and so in tune with her that it melts my heart, sometimes I want to cry for the things that she helps her out with. Bringing her blankets, soothing her, just a look, or a "oh poor lolly pop"
When in a crisis and there's no adult around to help I have to bark orders at the others, get me this get me that, phone daddy, run a bath. These little things that actually mean so much are just brushed under the carpet. Swept away and forgotten Untill we need them again. On the rare occasion we manage to remember to thank them, but mostly the meltdown or situation that has just occurred is so frightfully exhausting for everyone that all we want to do is be in silence. We want to silently reflect on what happened what could have gone better, what went wrong in the first place. None of this matters of course because it's not going to be exactly the same the next time, I mean we always learn but the mistake of not doing something one time doesn't mean it's going to work next time. What we really need to be reflecting on is what went right! Who helped, what do THEY need now. They need praise, and gratitude, and love and a little little tiny slice of attention.
So this is a message to all of those Ray's of light and hope, little gems,
Thank you for always being there, thank you for making my job that teeny bit easier and thank you for understanding that mummy might not say it every time but I am eternally grateful that you're here and that most of all "you get it"
I felt a little bit of pain and guilt earlier today, moo had just come from an appointment where she had to have her finger redressed, she fell asleep on the way home as it was quite a journey and on the way back we went to pick up her sister and brother from the office as a last minute change of plan. As you know our special children don't do changes quite as easily as most people do and so anxiety was reaching a peak and we needed distraction and empathy to ease the meltdown that was imminent.
So Lolly gets in car growling and crying, very frustrated and moo instantly woke up to the sounds of her distressed sister and passed her her hand.
"Here lolly hold my hand" she said!
And so she did............💗
Eternally grateful is not enough! 💔
More time would be more useful!
When I first started making my family I never thought I'd be in this situation that I'm in now. Special needs children with an alphabet of diagnoses after their names, I never thought it would be all hospital appointments and Sen meetings, waiting on panel dates and having my children's future decided by professionals who only knew my gorgeous daughter by paper records.
I never dreamed that I would have to send one of my children to a special school, why would I? No parents ever think these things, it's not in any manual, there's no instruction booklet for it. It's just quite simply "one of those things"
"One of those things" turned into "two of those things" and more than likely a third, but like any parent facing obstacles, we deal with it the best we can. So when I was asked to write out a little something for the panel that would decide my daughters future on which schooling would best suit her needs I decided to be explicitly honest. I'd had enough of form filling, and box ticking. I'd grown tired of using statistical facts, and medical jargon. My child isn't a record. She isn't a statistic, or a bunch of facts, and opinions on a piece of paper, she is more than that, and she deserves the best. She deserves to be on a placement where teachers and peers respect and understand her for who she is, she deserves inclusion and freedom and the chance to be herself openly and honestly. She deserves more than mainstream can ever offer her. So I wrote to the panel but I forgot about the jargon and I wrote honestly.
It was a risky thing to do, I mean i put our whole family out there. I wanted them to sympathise with a parent and child who had done all they could, reached the end of a very long road and needed rescuing. I was so nervous pushing the send button on this email, it would have been the most doubtful thing I've ever done for one of my children!
The letter did work, it worked wonders I was so surprised, I had a telephone conversation with a lovely man at the SEN dept and he said it even pulled at his heartstrings!
And that my friend is how I got a placement for my beautiful daughter and THE best special school where we live!!! Yay!!