Coping with feeling different from everyone b/c of child's special needs - Mothering Forums

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Old 05-28-2014, 11:44 AM - Thread Starter
 
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Hi!  I wondered how others cope with feeling different due to your family's circumstances in relation to your child's special needs.  I am finding that it is harder for me to relate to other parents whose children do not have special needs.  I have had a child with special needs for almost 10 years (my daughter was diagnosed with hearing loss and received a cochlear implant and hearing aid), you would think I would be pretty used to it all by now.  I was comfortable with where we were until she she was diagnosed with new, life threatening issues last fall.  I feel more like an outsider than ever.  It probably does not help that we moved from our long time home right before my daughter's diagnosis with Type 1 diabetes and Celiac disease, leaving behind our entire support system.  And because my daughter's new health issues surround food and her activity level, it makes it really hard to relax and form new friendships.  My brain is on overdrive calculating carbs, worrying about blood sugar levels, and just generally trying not to freak out.  Throw in me being a total introvert and you have a recipe for social isolation.   Anyway, I wondered if there were others who could relate and if you have any words of wisdom for me.    

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Old 05-28-2014, 07:31 PM
 
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I'm not sure that I have any words of wisdom, lol, but I totally feel like we are on a different planet with our son's needs.  No one- no one- gets what it is like for DH and I to keep our son safe and alive every day, never mind trying to actually go somewhere or do something with him.  We have great friends, some with NT kids and some with special needs kids, but no one gets that our son is a CONSTANT flight risk.  Obviously, that affects our ability to do "regular" kid activities, like meet up for playdates at the park.  It's isolating.  

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Old 05-29-2014, 07:36 PM
 
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no words of wisdom, but I can relate. My DD is on the autism spectrum, and my DH's career moved us over and over. The combination meant that I seldom had anything resembling a support system, and I had a very hard time relating to the new people I was meeting.

Everything I can think of to say just sounds cliche. It sucks.

It has gotten better as she has gotten older, has more of her own life and responsibility for her own needs (she is in community college now), and I have time and space to have my own life with connections about other things (ironically, I'm now in training to be a special education teacher)

Are there any organizations for parents through her hospital/health care provider?

but everything has pros and cons  shrug.gif

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Old 05-30-2014, 05:57 AM
 
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I'm with you! It can be really hard to relate to parents of kids that don't have special needs. I've got one son on the autism spectrum and my other two boys are gifted with learning disabilities. They are all in a gluten free diet, because they all have both genes that make you more susceptible to celiac and celiac runs in the family. I think I have the most problems when my sisters are sitting around talking about their own kids. Sometimes I just feel left out because what I think of as a huge accomplishment doesn't seem like anything to them.
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Old 05-30-2014, 06:35 AM
 
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i'm with you, too i am disabled and use a cane or walker, and use scooters in large stores, so i'm the one from another planet. my 9-yr-old daughter has fairly severe ADHD and sensory issues, not quite special needs but combined with my using visible aids for my arthritis and spinal issues, we're quite a pair. sometimes i watch "normal" families and i wish our life could be so easy. but then i remember there's no such thing as "normal" and what i see as "easy" might be very difficult for others.

you have to focus on what you can offer the world, your strengths and positives.

also, it's helped me tremendously to use a small notebook to keep track of all the things like medication, dietary and scheduling, even if i don't really need it - other people seem to benefit from me externalizing our complicated life, i can take a pause and read my notes or make notes, it helps them take a pause as well. not quite sure why that works, maybe it's compartmentalization? breaking things down makes me less overwhelmed, perhaps i'm more receptive to social cues.

mellow mom to a fabulous hippie girl
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Old 05-30-2014, 09:01 AM - Thread Starter
 
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Thank you for your responses everyone . I think just reading them made me feel a little less alone. It also brought me back to the "me" that I was 20 years ago, before I was a mom. My nephew was diagnosed with autism at that time. I can remember feeling empathy for my SIL and thinking that life was going to be quite difficult for their family. I have to hope that others out there look through those same empathetic eyes. Purpleraven, your reply has brought tears to my eyes- happy ones . It is so good to hear a strong voice from someone who has been there personally. I hope to instill that kind of strength in my daughter. I want her to be proud of who she is. Honestly, I am in awe of her and how courageously she has handled all of this mess in her life. If we can make it to the other side of adolescence in one piece, then hopefully it will be relatively smooth sailing after that. Thanks again everyone for sharing your insights.
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Old 05-30-2014, 05:05 PM
 
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Most of the other parents cant possibly "get it" but some do, so we have very close relationships with those parents of more typical children who do "get it" and respond well to our son, and his various issues.

We don't try to help anyone "get it", we just kind of run through a lot of people until we find the good ones.

I remember when our son was first diagnosed: we used to try and explain his issues/behaviors to everybody we met. That stopped. As an example son is obsessed with buses, to everyone he meets he starts talking about buses. I used to tell everyone that he was "autistic" and run through the whole spiel. Now I just say "He likes buses". The good ones usually come back with "well who doesn't". Those are the people to hang out with.

Our son is out there. He is in cub scouts, he plays in sports leagues for kids with disabilities. He plays sports poorly, and cub scouts only works out like half the time, but he enjoys the company, we laugh at him, he laughs at himself.

I enjoy speaking with the other parents of more typically developing kids, and try to relate on the things that are the same between parents, not my sons disabilities. I guess its about trying not to let the issues you are dealing with become who you are.


Like everybody, I cant live in the world of his issues all the time, it would drive me crazy. I need a break and a chance to feel normal.

We are very aggressive about trying to find and meet new people. We host parties, bring in live music and try to socialize. This a marathon, not a sprint, you have to program into your lives opportunities to relax, build a community of good and supportive people.

Have parties now and again, even if its just two or three couples and their kids sharing potluck. Drink some wine, listen to some good music.

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Old 06-01-2014, 03:04 PM
 
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Quote:
Originally Posted by FiveandCounting View Post
Most of the other parents cant possibly "get it" but some do, so we have very close relationships with those parents of more typical children who do "get it" and respond well to our son, and his various issues.


Like everybody, I cant live in the world of his issues all the time, it would drive me crazy. I need a break and a chance to feel normal.

We are very aggressive about trying to find and meet new people. We host parties, bring in live music and try to socialize. This a marathon, not a sprint, you have to program into your lives opportunities to relax, build a community of good and supportive people.

Have parties now and again, even if its just two or three couples and their kids sharing potluck. Drink some wine, listen to some good music.
What a great post! I will remember to have more parties!

I have found to my surprise that there are special needs that people respond well to and can make you feel more connected, and special needs that are absolutely isolating.
DS2, in a away, is easy: he was born with spina bifida, he needed multiple surgeries after birth, he has needed surgery since (I am in fact typing from his hospital bed), he needs braces to learn to walk, he needs to be catheterised and to have enemas, he will at some point need a wheelchair. For some reasons this kind of visible disability is easy to get, people think we are awesome for doing all this (and won't believe it if you tell them, really, it's okay, it truly does not matter to us any more until they meet him and are bowled over by his charm and happiness) and are totally supportive. And they come up with stories about pregnancy scares, disabilities and medical hardships among their families and friends, stuff you know they'd would not have told you unless they knew that you'd get it - and the connection is, instantly, there.

Even though his older siblings are mostly healthy and their special needs are so mild in comparison to his, it is often harder and more isolating to deal with them - because people don't get it.
DS1 was all but diagnosed with autism because he has a combination of traits (probably highly gifted, highly sensitive, anxious, rigid, sensory issues, easily overstimulated and if so, aggressive, hyper, starts tics and stims...) that used to make him look autistic when under stress, even to specialists. The formal evaluation showed he wasn't anywhere near it, but still he had all these behavioral issues, was beginning to be isolated in preschool and it was almost impossible to take him places due to the ways in which he freaked out when overstimulated. There was no good way to explain this, we just had to leave places, cut down on social activities as a a family, stop play dates, reduce daycare, work on his diet, his sensory issues...no-one got it.
DDs sensory issues revolve around food - people thought that she was just a picky eater like any other toddler and we were just ineffectual parents, the ped just put her on laxatives when her bowels basically shut down. No one saw how she would runaway screaming from the tiniest bit of soft boiled vegetable or minuscule piece of Apple not even on her plate, even on the table, and continue screaming for the rest of the day until she fell asleep with exhaustion....for weeks. Well, they finally got it at her preschool but did not get why we would have to finally take her off all grains and carbs and insist on vegetables and supplements with every meal...and still it took over a year for her to have mostly normal daily bowel movements, and each slip gets her off track...and nobody gets it! People have a hard time believing in diet issues, as if a carb dependency or a gluten intolerance is a matter of attitude. Nor did they get that no, there wasno way to stop DS1 s tantrums just by parenting the way others did, whatever that was.
After dinner, we are usually completely exhausted simply by trying to feed all our kids the kid of diet they need - the right carbs, not too many carbs, the right fats, veggies, bone broth, make sure DS 1s blood sugar issues, DDs constipation issues,, ds2s need for a moderately ketogenic diet, supplements for everyone, AND, with everyone's various anxieties and rigidities about food (I do not make an exception for myself, I still go into most meals with so much tension knowing for at least a half hour or so, everything will be a battle and there will be so little time to just enjoy family togethernes and simply, the meal) coming to a head, still trying to teach table manners and have a conversation...catheterising and installing medication for our youngest, doing the PT, placing the overnight catheter, nursing him down...really, it would be a piece of cake if I wasn'tt so drained simply feeding my not-so-special-needs kids dinner...and NOBODY gets that.

In your situation, I would probably try to reach out to local parent groups who have children with celiac, and diabetes 1- with the autoimmune connections I am sure there must even be quite a bit of overlap, and maybe a paleo/primal lifestyle can even ameliorate the diabetes somewhat. These parents will get it, but with others...I will just have to have patience and remind myself that formerly, I wouldn't have gotten it either.

Last edited by Tigerle; 06-01-2014 at 03:08 PM.
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