I have posted before but still feeling confused xxx

Thank you hun, I do document everything. I have a good relationship with our daughters current teacher and I hope it continues as school have started to agree to her having things in school. I have just started to tell them rather then ask. When I ask our daughter about school she says she likes it and is happy. She says she likes knowing what's happening where as at home we try to be relaxed with her and not so regimented xx 

If its any help school always said my son was fine too I disagreed he found it very difficult to learn to write and had difficulty holding a pen, his hand began to tire after a short time.  I had to do exercises with him such as rubbing his skin with a rough towel and other things which sound really ridiculous but were supposed to improve his sensory problems but at home it was very difficult as he was too youn gto understand  the point of it all.  It did help a little but in practice was very time consuming and not practicle, as you say mothers are not OT's.  Im not here to give anyone advice all I would say is that if you want assessments done get them while your child is in Education because thats when you need the help most.  Another tip put your concerns in writing if nobody takes you seriously and keep a copy most of all keep all documentation from schools and medical side.

Hi, I totally agree with you about the lack of help. I never thought getting a spd diagnosis would mean I needed to be come a qualified OT. Things are getting easier with getting our daughter to use her tools but I still struggle, I've stopped fighting with her school cause the say she is fine all day and needs no help. Her school tell me she plays happily too but at home she finds it stressful and gets upset. Her hands work ok but she will get pains when she has held a pen for a long time.

Jayne xxx

Hi,

My son was diagnosed with similar but Dyspraxia and nvld I was told he had pdd milder end of spectrum possibly Asperger have had a real nightmare getting help at all.  He is now an adult  and I am still fighting the system if anything its worse as you are left COMPLETELY on you own.

These sensory issues you mention I know really they are so difficult to deal with and there isn't enough help.   I know I have been there.  This mild word that professionals use is complete nonsense, its an excuse for lack of funding.  From experience the problem with the local authorities is who is going to pay and that of course means who is responsible.  My sons sensory issues have improved with time but not completely.

He still uses headphones when using the vacuum cleaner hates bright light etcetc

Can your daughter use her hands well using crayons and constructing things with lego etc?

Hello I don't think so. She was diagnosed with sensory processing disorder and mild autism.

Xx

By the way does your child have Dyspraxia ?  struggling with balance? clothes being wrong?  often sensory problems are part of Dyspraxia?

Hello sorry it's taken me so long to reply. Her sensory issues tend to vary depending on her day. Her worst is chewing when stressed or anxious. Her other issues are nail cutting, hair brushing, pushing when we're out, she struggles with balance, clothes being wrong, she has also started getting hot n itchy when stressed too xxx

It's never helpful when you need clarification and someone tells you just to read the instructions again. I'm the type of person who needs constant guidence and reassurance that I'm doing it right. It also takes me a long time to pull the contents and meaning from statements or written text. For me this is largely due to my Dyslexia and reading and re-reading is the only way I grasp it, but face to face instructions where I can ask further questions is what works best in my case. You may need to be more explicit with the therapist and explain that you are having difficulty understanding why these things will help.

Re OT it can be very hit and miss with some of the physical elements, but sensory has been a bit more succsessful in our case. My son has fine & gross motor difficulties. He has hyper-mobile joints and tight tendons, core stability issues, falls constantly and has a hip that pops out all the time. As you can imagine his hand-writing is illegible. In order to have any real impact on his muscle tone, I'm pretty sure he'd need to have the muscle tone of a body builder to hold himself together. He also has significant pain if he walks too far. Even a heavy day at college walking from class to class, causes pain. We only use an oesteopath & homeopathic remedies for the pain now and painkillers on the very worse days. We no longer use the special cutlery either as he's much older now.

Re The sensory stuff, for my son has been more about a mixture of limiting and exposing him to certain slimuli. He hated crowds and still becomes overwhlmed at times, but can manage it much better than when he was younger. At one point we used ear muffs. With clothing it means finding the stuff that is comfortable enough to wear. He still gets agetated at the feel of holding a glass etc etc.

Exposure to some environments over a long periods can bring anxiety levels down, but it depends whether it is anxiety about new unfamiliar environments is causing the upset or the environments themselves, so I've always exposed my kids, although the knee jerk reaction of most is to avoid them like the plague. Meltdowns are stressful for most parents, but it's very much trial and error. You have to do what you feel is right for your child.

Re discipline. I always used time-out, mainly because by the time my child was lashing out he had already reached sensory overload. It prevented the situation from escalating on both sides and gave him the necessary down time. Taking away golden rewards may not be an option for you, but if she values them that much, you could inform her that she won't earn any gold rewards that day if her behaviour continues.

Sanctions and rewards are a very personal thing really. They have to be tweaked to suit the time and family concerned. One of my boys still needs the carrot dangled. If you give him a reward before the chore is complete, it won't get done.

Can you tell me what sensory issues she has? I maybe able to offer some ideas to try.

Coogy.

Thx for your comment, I've tried that but got told to read what I had already read. I struggle getting our little cherub to use her tools when we're out or to help her understand they help her xx  

You say "I do none of her spd therapy cause I don't quite get it"

Perhaps you need to speak to whoever gave you her therapy program, and ask them to go through it with you until you understand fully. There are books available on the subject - I recognise a lot of my own traits now which drove my parents mad!

Thank you both for your replies, they are both mega helpful. I honestly really don't want to try home schooling but I'm clutching a straws to help her. Coogeybear, you have spoken to me about privately paying for an OT b4 but my husband is very reluctant to pay as he feels it won't help. I feel it would. Can I ask u both about discipline, when Dm is struggling we get attitude and some hitting but discipline doesn't work. She earns golden tickets for good things but I've been told not to take these off her. What are your views? Also what are your views on taking our cherub places that upset them, do u avoid or do? Thx again both xxx 

Great advice Denise476,

      The only thing I can add which maybe of some help was that I had the same issues with OT and struggled to maintain the regime. To keep us on course, I consulted a private OT weekly who added variety to the task and kept us focused. We used my sons DLA to finance this, otherwise it would never have been an option we could have afforded.

As a parent who has done the home-Schooling thing, I can say that it's not for the faint-hearted, but I really had no choice as my children were at breaking point. Mine were at Primary also but I couldn't have managed Home-Schooling into Secondary education and the truth is that social interaction with peers is important. Plus it is good for your own sanity to have periods apart.

Being a parent is one of the most demanding jobs their is, but also has it's rewards. Being a parent of a child with special needs, takes that demand to very edge of human endurance at times, but equally, watching tiny steps of progress unfold can be equally, if not more, rewarding.

Be kind to yourself. Everyone is different and no two families are the same, just as no two children with SEN are the same.

Our children don't come with a manual and conforming to what society expects is seldom helpful to families such as ours. It puts unnecessary pressure on us. Your family is unique and you must do things that suit you, at your pace and in the interests of your families well-being.

Take Care

Coogybear xx

Being the parent of a child with SEN can take enormous patience and energy, and you'll always question whether you're doing the right thing. But remember you are your child's best ally, and the person best able to support her. It is entirely understandable if your daughter 'loses it' when she gets home from school, as she will have been working extremely hard to keep herself together all day. Home is a trusted place where she can allow herself to relax, so give her space to do that safely and let her know that she'll be OK. While she loves school (I guess this is what you meant), I wouldn't take her out to home school, but give her your best support to cope with the difficulties she encounters there. If the paediatrician and OT say you're not entitled to professional help, they may be persuaded to provide your daughter's teachers with information so they are better able to support her in school. It may help her and you to have some consistency between school and home, with a predictable routine and structure, but it needs to be supportive rather than a straightjacket - it probably won't work all the time. As for therapy at home, take what you can fit into your family lifestyle without making your daughter (and anyone else in the family) feel as though they are in permanent therapy. Everyone needs some down-time, including you. Certainly don't ignore her sen, but don't make therapy a burden for her, you and the rest of your family. Finally give yourself a break and take heart that you are doing your best for your daughter - no-one could do more.