anyone out there with a special needs child?

Question

I have a seven year old sweet little boy who has been diagnosed with Morquio syndrome and there isn't a cure for it. We recently moved and started a new job and my employer isn't happy that I have to attend so many doctors appointments not to mention I have to be at the hospital with him once a week for more than half a day for him to receive infusions. 
Im having a break down and don't know what to do. I am a single mom of two kids and I'm not playing the single mom card but I am the only source of income for my children but my children comes first. Part of me feels angry because he keeps saying oh you're taking days off when in reality I'm at the hospital holding my child while he cries and pushes because he doesn't want to have a needle in his body. It's not days off.. he didn't choose this. Any advice?

Answer

Look into your job if your protected seeing you have special needs child. My child is diagnosed autistic n I have to leave work for her therapy 4 days a week and boss doesn't mind but others make comments that it must b nice to b able to leave early everyday. Screw them tho bc I leave 2 hrs before them but I make up for it by coming into work 3 hrs before them. Maybe you cud work something like that out where you come in early n get crap done in order to leave early?

Answer

Try looking into the FMLA they will have to hold your job, well i think if your on probation at work maybe not. But call them see what they say

Answer

Are you Canadian ? I'm a human resources worker.. I can give you some info based on Canadian laws.

Answer

Think you can claim childs disability allowance and carers allowance which would benifet you financially. Im not sure you would be open to family helping or maybe carers or respite help to give you a break as its important you have a break as well. Work need to be more understanding or your going to have to find alternative work options which are far more flexible shiting your hospital requirements. Father of the child should be paying C.S.A child support allowance which again would help you financially. Ask your hospital or local council for groups of adults whom meet weekly also in your situation it may help to socialise with others in this way. If your really struggling and open then theres social workers available to help you too. Think you can claim for a carer but im not entirely sure. I don't have a disabled child mine has medical issues more so. Hope this can be of some help though for you

anyone out there with a special needs child?

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