Originally Posted by Mama_2_Boy
DH is 7, soon to be 8 in December. We went through a whole round of testing with the pshychologyst and the testing was positive results, albeit there still lay challenges ahead. He struggles with the an "all french" school program so on the Dr's recommendation, we will switch him after the Christmas break, I'm worried for that change as he does not deal with change well.
He is very lively, hyper almost but the testing ruled out any ADHD or components of it. His learning disability is math, but ranked 'gifted' in memory and attention - can you figure that?. He is very easily distracted, so the teachers struggle all day long with trying to get him to sit still, even before they can begin to try teaching him! All he wants to do is play and run around and he hates to learn. I am just terrified that he is on the path to starting drug use when he will be exposed to it. I KNOW what challenges lay ahead. I read and read and read, and there is so much information out there; "look at the diet, eliminate dairy, wheat and sugar", "stick to a schedule, bed time at _ and wake up at _...all the time even weekends", "teach him self control", "teach yourself self control"...and on, and on, and on. I have enough trouble with my own self discipline....let alone my childrens!! I just don't know how I'm going to do this....I'm bawling as I'm typing this....we recently found out that our DD is blind in her left eye...now we are going to a variety of specialists for that...I'm afraid for her, for her single good eye and find myself being paranoid when she is outside running around in the woods with her brother, that something might poke her eye out, or she'll fall on something..I told the Dr I don't want her using protective glasses because what if she falls on those?? I just don't know how to be a mum....gone are the days when we can just 'be who we are to be' with our kids...there seems to be so many rules now...and the guilt! Oh the guilt! I honestly don't know how folks who have much more severe concerns with their own children get through it all. I'm sorry for the 'woe is me' , I'm not looking for pitty, or even comfort really, I just don't know how to 'fix' things are make them any better anymore.
Thank you for taking the time to read my post.
I'm so sorry to hear about your DD. I can totally understand how you feel being stretched between the needs of two children. I have a 2e kid with sensory/vision issues who could not read and an allergic child with severe eczema. I'm not sure about your financial situation, but while I was at it, I felt constantly guilty when I had to consider whose doctor's/ therapist's bill I was ready to commit to, and whose needs I was going to attend to first. I ended up concentrating on one kid each time, whoever needs were more time-sensitive (in ds2 case, how infected the wounds were), and then turning to the other kid when things improved/stabilised. I totally get what you mean by the "woe is me" while knowing there are folks with much more severe concerns. I have a neighbour whose child has severe cerebral palsy and is totally dependent on wheelchair and I know my trials were nothing close to theirs. But I was exhausted and worried and had been sleep deprived for three years during that period.
I would suggest that you look at what each child needs, and make a list. And then see how you can combine all these into a weekly schedule or list of priorities and stick it on the fridge. (In my case, I will schedule in vision exercises, sensory activities, order of medication through the day for ds2, cleaning/cooking schedule). This gives you a plan to work with and makes it less overwhelming. There will be days when you just feel so tired and you can't think. The list will tell you what you need to do.
Whatever is not priority can be outsourced or delayed (in your case, perhaps household chores or cooking). You have to cut out as much extraneous activities as you can so that you don't spread yourself too thin.
For your daughter, I suggest looking for support group for children with vision impairments and network with parents who are further along this journey. They will be able to give you so much practical advice on the day to day needs, and also eventually dealing with schools and society. The safety concerns are very real, and I think you will feel better after talking to another parent who have dealt with this. My son has impaired depth perception and stairs/escalators/ road safety have been an absolute priority. Structured gym classes have been helpful for this, both for improving his proprioception, and helping him to fall safely when he could not trust his eyes. He is eight now and we still hold his hands in carparks after a few scares.
For your son, you may find reading up on 2e (gifted with learning disabilities) issues helpful. It will help you meet your child's learning needs better, and if the teachers are receptive, you can guide them on his needs, or at least, get them to cut him more slack. I will also suggest looking into sensory needs if he seems to be bouncing off the wall or very unregulated for his age. The Mislabelled Child by the Eides may be helpful to you. It covers various sensory and learning issues, explaining them, and giving list of suggested strategies on how to deal with it. It has also a short section on 2e (twice exceptional) children. It has almost too much information. :)
For my son, being 2e also resulted in huge anxieties and self-esteem issues. Besides therapies and vision exercises, it was necessary for me to work with him on self-esteem and perspectives. Mindset by Carol Dweck was recommended to me and I found it both practical and helpful. He was reaching a place of self-hate and self-harm and I was very worried. Once I turned his mindset around, he worked willingly with me on the vision exercises even though they were of limited help. His turning point came with his Irlen lenses, but he had a lot of catching up to do. A lot of positive talk along with the growth mentality was required. He still have periods of challenges in school and some residual learning issues and sensory issues, but overall, he has really made huge improvements that he could observe for himself and is motivated in his learning.
As a parent, while we have our private fears and griefs, I think what is really important is to present a calm front to our children, and to treat what is our personal calamity as normal in their face. While we know what they are missing out on, they do not. It is their norm. It may be helpful to look to inspirational stories of individuals who have overcome physical handicaps and focus on positive traits like resilience, adaptibility and perserverance. I cut out inspirational stories, we watch the paralympics. I tell them about other children of acquaintances who have more serious needs. Perspective is everything.