1. < Mental Health

Mother of special needs children losing her mind

Posted by mrsjoanie @mrsjoanie, Jan 11, 2017

I am a 50 year old mother/step-mother and have 7) children of which 3 (ages 14-30) were born with microcephaly. It is a constant thing and I'm trying my 2nd anti-depressant/anxiety med and am going crazy and long for the "train to stop" so I can get off. Are there other mothers out there with special need children that have found answers to surviving and living happily from day to day or rather night to night and being the support to their children that I should be? Thank you, Mrs. Joanie

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mrsjoanie | @mrsjoanie | Jan 26, 2017

That is very kind of you. I should more thankful for my children and how well they do do, when there are so many others with suffering and extreme discipline. The 30 year old is dusting and vacuuming for me today! I have felt "lifted up" more this week. Just started taking more iron yesterday, as I know the doctor was concerned with my levels a couple years ago and I was very diligent about it back then. Going out now to do some of my 14 year old daughter's paper route and get some exercise. It's been a good lesson for her and gives her a sense of responsibility and also "hands on" with money/bank account, etc. (She is just learning the difference between a 1$ and 2$ coin and that one coin is twice as much as the other. She loves to spend it....but.....not able to comprehend saving. Also looking into shower timers, because her and our 30 year old have no concept of time. I always have to turn the hot water off on our daughter after 15 minutes. These things do seem petty, I know. But it is always something and it's constant - from one child to the next and the next......3 special needs here. Thanks for now.

REPLY
georgette12 | @georgette12 | Jan 26, 2017
In reply to @mrsjoanie "Dear Fernanda......I'd like to encourage you with a "you do sooo well"....but sometimes that is not..." + (show)
@mrsjoanie

Dear Fernanda......I'd like to encourage you with a "you do sooo well"....but sometimes that is not what we want to hear, is it? Because sometimes we don't do well. I really need to hear these little successes other mothers have managed to find in their daily lives with all the cares and needs required. We don't need sympathy....just another one who understands.

I want to be a happy and loving contributor to my children's lives and to know I can help, comfort and nuture them and know that they are coping with their difficulties and are doing the best they can do. I want to be able to see their little accomplishments and make these mean more to me instead of always wishing they could do better.

I was included at a large (200+ people) special education conference 6-7 years ago and came away feeling really uplifted because I could see there are so many special need children out there and there are so many that spend their life helping fulfil these children. I want to be able to do this too. So I struggle on, day after day....forward 1/2 step, back 2....forward another 1/2 step, back 2.....not able to see that maybe there is more progress being accomplished than I realize because I am so caught up with all the details.

I can see the little things for you include 1 hour a week w/others in similar situations, a bicycle, enjoying your play time with your children and giving it your full attention, 10 minutes of meditation and time to read before bed. These little times turn into very big moments of "recharging" yourself and do add up. Yes....this is needed. I'd like to think I was organized enough to do this, but tend to just "shut down" and plod along trying to "tune out" things until the next crises hits. There doesn't seem to be any time I can schedule to rely on others to "take over" so I can get this total relief. I've always something on my mind or a need somewhere.

So I will think on what you've said and make another attempt at this. I'm trying to make it an issue to walk 1 mile a day - takes about 20 minutes and this MUST happen and my family must come to see how important this is to me. But I need to see the necessity of it before I can show them, don't I? I think this little goal will help me in quite a few areas.

I go back to the doctor today after a month now on my latest anxiety meds. I do feel calmer...but wonder if it's not the best for my tummy. Thank you for your time and take care, Joanie

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Mrsjoanie, just had to respond to your feelings about having mom in a facility appropriate to her needs. As a second career i worked in all sorts of facilities as either an emotional support person or an activities coordinator. Just a few months ago i worked at a home care agency that sent me to hospice, alzeiheimers and mental health facilities. Also i was sent to someone's home just to give the family a chance to get out and have their own time. What i learned: after a few days of adjustment, each and every person who now lived there began to come out of themselvesl they enjoyed the company of others their age and of course there are always appropriate activities for one and all. Even those in hospice enjoyed us reading to them or just talking about their life. I have so many wonderful memories of these very special people. Sometimes it was my paid job and sometimes it was my volunteer work. But the big thing is that once their loved ones were able to make the difficult position to move them, the new residents adapted so well that some of them did not want to go home even if they could! To tell the truth, i received way more than i gave. The gift of their big smile when we walked in just to visit, was worth more than they even knew. If your loved one is moving to a facility, do know that it will turn out to be rewarding for all concerned. I promise. Blessings

REPLY
mrsjoanie | @mrsjoanie | Jan 27, 2017
In reply to @mrsjoanie "Dear Fernanda......I'd like to encourage you with a "you do sooo well"....but sometimes that is not..." + (show)
@mrsjoanie

Dear Fernanda......I'd like to encourage you with a "you do sooo well"....but sometimes that is not what we want to hear, is it? Because sometimes we don't do well. I really need to hear these little successes other mothers have managed to find in their daily lives with all the cares and needs required. We don't need sympathy....just another one who understands.

I want to be a happy and loving contributor to my children's lives and to know I can help, comfort and nuture them and know that they are coping with their difficulties and are doing the best they can do. I want to be able to see their little accomplishments and make these mean more to me instead of always wishing they could do better.

I was included at a large (200+ people) special education conference 6-7 years ago and came away feeling really uplifted because I could see there are so many special need children out there and there are so many that spend their life helping fulfil these children. I want to be able to do this too. So I struggle on, day after day....forward 1/2 step, back 2....forward another 1/2 step, back 2.....not able to see that maybe there is more progress being accomplished than I realize because I am so caught up with all the details.

I can see the little things for you include 1 hour a week w/others in similar situations, a bicycle, enjoying your play time with your children and giving it your full attention, 10 minutes of meditation and time to read before bed. These little times turn into very big moments of "recharging" yourself and do add up. Yes....this is needed. I'd like to think I was organized enough to do this, but tend to just "shut down" and plod along trying to "tune out" things until the next crises hits. There doesn't seem to be any time I can schedule to rely on others to "take over" so I can get this total relief. I've always something on my mind or a need somewhere.

So I will think on what you've said and make another attempt at this. I'm trying to make it an issue to walk 1 mile a day - takes about 20 minutes and this MUST happen and my family must come to see how important this is to me. But I need to see the necessity of it before I can show them, don't I? I think this little goal will help me in quite a few areas.

I go back to the doctor today after a month now on my latest anxiety meds. I do feel calmer...but wonder if it's not the best for my tummy. Thank you for your time and take care, Joanie

Jump to this post

Dear Georgette....Thank you for writing. There are two sides to every story, aren't there? It takes very special people to work in these facilities and we are very thankful for you and those like you! You know it is difficult for us children to turn our responsibilities in looking after our dear parents over to someone else. So thank you for sharing. I wish you were in my mother's home! Take care and keep the love flowing, Mrs. Joanie

REPLY
lisapraska | @lisapraska | Sep 7, 2017

Hi my name is Lisa, my son us 5 years old and has been diagnosed with cerebellar atrophy, by an MRI we have been to the Mayo Clinic in the (USA), there we proceeded to geonomics (genetic testing) they did a small panel test and that came back good, so they moved on to a large panel test, got a call last week and we have to go back to the Mayo Clinic for the results in November, they just seems like a long wait for wanting answers for the last 5 1/2 years. This is a very stressful time for my husband and I. I was told before the large panel was done the if the news was good we wouldn't have to go back to the Mayo Clinic for the results and if they were not good we would have to return for the results, which is giving me this feeling my son's diagnosis is some sort of genetic disease. I'll be happy for the answers yet I am also very scared. I suffer from depression and anxiety, I often get overconsumed with my son and trying to research on what types of genetic diseases are curable, again he is only 5 years old and just started kindergarten.

REPLY
1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Sep 8, 2017
In reply to @lisapraska "Hi my name is Lisa, my son us 5 years old and has been diagnosed with..." + (show)
@lisapraska

Hi my name is Lisa, my son us 5 years old and has been diagnosed with cerebellar atrophy, by an MRI we have been to the Mayo Clinic in the (USA), there we proceeded to geonomics (genetic testing) they did a small panel test and that came back good, so they moved on to a large panel test, got a call last week and we have to go back to the Mayo Clinic for the results in November, they just seems like a long wait for wanting answers for the last 5 1/2 years. This is a very stressful time for my husband and I. I was told before the large panel was done the if the news was good we wouldn't have to go back to the Mayo Clinic for the results and if they were not good we would have to return for the results, which is giving me this feeling my son's diagnosis is some sort of genetic disease. I'll be happy for the answers yet I am also very scared. I suffer from depression and anxiety, I often get overconsumed with my son and trying to research on what types of genetic diseases are curable, again he is only 5 years old and just started kindergarten.

Jump to this post

Hi, @lisapraska. I am sorry to hear about the stressful time you and your husband are having waiting for news on your son. Waiting can be really challenging. My own son was born with a sacral dimple, and we had to wait three months to finally get an MRI done, till he was old enough. The waiting time was concerning.

I see that you've connected with our Brain and Nervous System Group, which is great. I also wanted to encourage you to take a look at the About Kids and Teens Group, moderated by @kanaazpereira, here: https://connect.mayoclinic.org/group/childrens-and-teens-health/. Also, I thought you might be interested in looking into our Caregivers group, moderated by @IndianaScott, here:https://connect.mayoclinic.org/group/caregivers/.

Lisa, what kind of emotional support system outside your immediate family would you say you have at this time?

REPLY
mrmaid11 | @mrmaid11 | Dec 20, 2017

I am 86 years old and have a 63 year old daughter with a disability. It is now thought that she is on the autism spectrum. When she was young there were multiple diagnoses. Learning has been a challenge for her but she has been able to achieve much more than we would have even hoped for. She is high functioning but yet needs attention with many things. Her progress is what has made me face each day and often with a smile. I have battled depression much of my life due to several childhood traumas and then the difficulty in caring and fearing for my daughter. I have always said that when we are given special children we should get eternal life. My greatest fears have always been what happens when I am no longer here. Enough for now. H ang in there. There is some sunshine amidst the clouds.

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