Tuesday, 2 July 2013

7 Things You Don't Know About A Parent of Children with Additional Needs

Annotated from some text I came across on another blog about parents of children with additional needs -

1. I am tired. Parenting is already an exhausting endeavor. But parenting a child with additional needs takes things to another level of fatigue. Even if I've had a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month or week!! Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning her to sit a certain way, advocating for him and her in the medical and educational system. This is not to mention the emotional toll of raising a child with additional needs since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small. 

2. I am bitter - I can't help it - I find it extremely difficult to listen to other people's melodramas and patiently listen to them go on about how hard they have it. Since having my baby girl I see life through a different lens and I have lost patience for other people's petty problems - I find it hard to listen to anyone, even my poor husband as my mind is constantly whirring with thoughts of how I can make things better, how I can do things better and which hospital appointment I have to attend next and what preparation I have to do for it. I plough my every last bit of energy into doing the best I can as a mum and falling out with professionals on a daily basis because I cannot merely take their word for it when the subject of debate is my child's life and wellbeing. It is exhausting not being able to trust even the professionals to get things exactly right for your child and to constantly question their decisions, I do not do this for a pass time and I do not like coming to blows with people but when my children are in the equation, I would cut my arm off if I knew it would benefit their lives in a positive way.

3. I feel alone. It's lonely parenting a special needs child. No matter how much I try to explain the difficulties we face as a family, few manage to actually take this on board and think that telling us everything will be fine and "she'll be alright because she smiles a lot," will make it all better - I feel comments like this trivialise the daily worries we face and also do not allow us as parents to voice our worries concerns and fears to the person saying "everything will be fine". It's been a sanity saver to connect with other special needs parents with whom it's not uncomfortable or shocking to swap stories about medications, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected and I feel humbled by every family's unique difficult experience. 

4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about their future, whether she will ever drive a car, or get married, or live independently. I am scared thinking of the hurts she will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what would happen if anything were to happen to me? No one fights as hard for my children as I do - its a full time soul destroying job at times 

5. I wish you would stop saying, "as long as it's healthy, or tell stories of how worried you were that your child may have had something wrong with it and you're so relieved it's normal, " I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my children are. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.) no life should be worth less because it is not just how you expect or want it to be - you get what you are given and every life is as valid and special as the next. 

6. I am human. I have been challenged and pushed beyond my limits in raising my son and daughter. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without them.  I look at children and adults with additional needs in a completely different way - they used to be from a world I found difficult to connect with but now I am part of that world and have no choice but to dive head first into it. I'm just like the next mum in some ways. Sometimes I get cranky, my son and his demands irritate me, and sometimes I just want to flee somewhere quiet and dark.. Which leads me to the final point...

7. I want to talk about my son but find it still very difficult to because of the comments i receive "he seems fine to me" and "oh my kids do that all the time" and "well thats him just being boisterous" It's hard to talk about my son. Its hard to talk about my daughter. She is not what i expected in a daughter - she is more than i could have ever imagined and i truly believe she was sent to me to save me from myself (a sufferer of lifelong depression and anxiety disorder) My children are the most awe-inspiring things to happen to my life. Some days I want to shout from the roof tops how funny and cute my son is, or how he accomplished something in school. Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. Sometimes i forget to even update their daddy on an evening because i am often so exhausted or overwhelmed by the information i have received that day. I don't often share with others, even close friends and family, the depths of what I go through. Usually if a friend or family member asks "how are you?" I just respond, "Good." Its easier and who really cares or wants to know the long drawn out in depth answer about how we are struggling to cope and feel a deep despair most of the time even though things appear fine on the surface. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to. Sometimes I just don't have the energy to share or I fear the response I will get back.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection and unconsciously I'd come to judge myself and others through this lens. Go to university, get a successful job. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible. All I want for my children is for them to be satisfied with their lives and feel comfortable and happy with themselves. 
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolise and build our lives around, and puts something else at the core: love and understanding. The definitions of beauty, perfection and happiness are questioned and re-evaluated. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed. And to not realise the blessing is to not survive the challenges we face. 

Monday, 8 April 2013

Zumbathon and Family Fun Day

If you follow Hallie's Story on Facebook you will already know I am organising a charity event which I am hoping will attract hundreds of people on the day. As well as raising money for Sturge Weber Uk I hope the charity event will help spread awareness across sheffield of the rare condition and help educate hundreds of new people. It will be a fantastic day for all ages whether you're taking part in the zumbathon or bringing the kids for a fun filled afternoon playing games, taking part in craft activities and saying hello to Beartie the sturge weber mascot bear!

Monday, 14 January 2013

facebook

Hallie's Story is now on facebook too : )

fund raising info

http://www.justgiving.com/Yvette-Hughes1    http://www.justgiving.com/yvette-hughes1               

please visit Yvette's just giving page and pledge your support to Sturge Weber UK.

Yvette is running a half marathon on 10 February to raise money for Sturge Weber UK and needs your support : )

I am touched that she and others have chosen to raise money for Sturge Weber UK, it gives me the motivation to try and spread awareness even more about the rare condition to get others involved in raising money for the charity.

Please also take a look at http://www.justgiving.com/david-needham1 - Hallie's Grandad is raising money for Great Ormond Street Hospital as they have, amongst other amazing specialist services, a Sturge Weber Clinic - the only one in the UK.

Also...! My husband (Hallie's daddy) Graham has a just giving page http://www.justgiving.com/graham-davidson (you can find his page by typing in Hallie Davidson) Graham is raising money for Sturge Weber UK

There are more fund raising events coming up this year that will be raising money for Sturge Weber UK - I'll keep you posted! xxx

Saturday, 22 December 2012

video - useful to know seizures come in all different forms

Hallie's first seizure on Monday 17 December 2.20pm.  She is 7 months old. Her seizures start in her left foot and move quickly up her left leg into her torso and then into her left arm.  They last approximately 5 to 10 minutes.  Hallie only has unilateral port wine stain on her brain (the right side only) affecting the frontal and parietal lobes.