What 3 things do you struggle with the most? - Mothering Forums
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#1 of 5 Old 06-07-2014, 11:59 AM - Thread Starter
 
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Exclamation What 3 things do you struggle with the most?

Hi Moms!

Im doing a paper on family perspectives on having a child with special needs. I was wondering if anyone would like to give me some input on their lives? I need to discuss 3 trends across families and so far my trends are 1. social isolation due to having a child with special needs 2. finding adequate personal time with spouses or significant others and 3. uncertainty about the child's future due to having special needs.

If anyone could elaborate on these topics or discuss something that you feel is important in your life I would love to hear about it!

I am in a M.Ed. program and am studying to be a Board Certified Behavioral Specialist, so any input on how to be a better therapy provider would be helpful! Thanks for your help!
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#2 of 5 Old 06-08-2014, 10:19 PM
 
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#3 of 5 Old 06-09-2014, 08:39 AM
 
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I just want to feel normal

Exhaustion...... being a parent of any child takes a lot of energy. Being a parent of a child with significant disabilities is simply exhausting. This leaves you with very little time or energy for yourself, your spouse, your other children and your friends.

Its difficult to keep positive; every so often you just break down and cry, not from a "oh why me?" perspective, but from a "how will I make it through the day, week month etc. ?"

Biggest source of grief: school systems and the poor quality of Special Ed programming, which forces us into an ongoing adversarial relationship with the school. You fight for weeks to get more help from the school and when you get it and then go into observe a session, you discover the person is just going through the motions, and really either has no skills, or has no interest in using them. You find a great teacher or therapist in the school system and they leave because of the poor pay and little support they receive.

Most of the time I am hanging on by my fingernails, racked by guilt that I am not doing enough either for my disabled son, or that all I do for him is time stolen from my other children. The idea of doing something for myself seldom bubbles up to the top of my thoughts..

Respite care is too infrequent, and quite honestly too much hassle to access.

There is no uncertainty regarding my sons future, he will be living with me for as long as I am around.

We try to socialize, and that helps. I don't feel isolated.

We survive, by celebrating the little victories, trying to stay together and not allow the hardships to create a wedge between us.

I don't want anyone's pity, I just want to feel normal.
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#4 of 5 Old 06-10-2014, 06:23 AM
 
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exhaustion would be my number one thing, too. it's not so much that I am overwhelmed in that I do not know what to do or where to turn, it's just that I do not have the the time to do what I know I ought to do and still get adequate sleep and rest. It is not that I do not get enough FaceTime with my husband and kids, it's that I lack the energy for meaningful interaction when I do.

Number two is the constant hassle with authorities, school, insurance, etc. making you fight for every little thing. There are no factual, medical or legal doubts about my child's disability or needs, so why pretend that there are so you can shelve the file until I threaten litigation? It makes no sense to me and I fear the reason they keep doing this is that a lot of people do give up, because they are too poor, too ignorant or too exhausted (see above) to fight. Anyone ever told you you are there to enable us, not hinder us?

Number three (and that one, I guess is mostly for kids with significant medical needs) is finding the right specialists, over and over again, for every new problem that comes up. The frustrating thing is that there are people who know what they do and people who just pretend, and who you meet up with and entrust your child to can change your and his life forever, for better or for worse - but sometimes they are indistinguishable on the surface, and you have to try them out to find out which category they belong to, or (best case scenario) find someone you trust who already has and can tell you about it.

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#5 of 5 Old 06-12-2014, 12:39 PM
 
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1. Exhaustion - my DD requires 24/7 care, so unless I have a nurse, I am on duty, and since home health nurses are not the most reliable, I have to be able to reschedule things at the drop of a hat, since I never know when one will call in.

2. Navigating the healthcare system - no I have a bachelor's in nursing, and had been a nurse for 10 yrs when my DD suffered her brain injury, but navigation through insurance, home health supplies, bills, therapies, ECI, IEPs, specialists, etc was just mind blowing. It still amazes me all the hoops we have to jump through for any little thing.

3. Feeling like my non-sn child is missing out. There is so much he does not get to do because it does not fit into our schedule, or we do not have a nurse. It is hard sometimes, especially since I do not want him resenting his sister.

Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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