Don't you ever just feel really alone?

[MicheleB]

Out of the loop? Misunderstood? Like no one "gets it" about your special needs child(ren)??

 

My 14yo dd has Bipolar 1 and generalized anxiety disorder.

 

My boys have significant learning issues (find out Friday). One has huge social issues.

 

And I just feel so.... alone at times. Like, you can't really share what's going on with others. Like, your friend complains because her 7yo son is having a hard time with THIRD GRADE work and you just think.... If she could only walk a day in your shoes....

 

I don't know. I almost find myself sometimes feeling like isolating because it's hard to relate to "normal" people. ;) Yet, I don't want to become a woman that feels like I have the right to have a chip on my shoulder. KWIM?

 

Just wondering... don't you ever feel this way? How have you balanced your desire for someone to understand with, well... reality?

[hsmamainva]

I understand completely!!!!!!

 

My 6 year old is more like a 2 year old (esp. in her language abilities and actions) ... so it's like I've been stuck in the terrible two's for 4 1/2 years!

 

My friends don't understand what it's like when I can't leave her alone for a minute without her getting into trouble...when we've had to put an alarm system in the house to keep her escaping out the front door...that our daughter is as tall as my 8 year old son, and she'll be 7 in January, and still isn't potty trained...and shows no signs of doing so any time soon.

 

For years, she had a passion for taking her diaper off and smearing the walls at night. NO ONE can understand what it's like to wipe poop off of the walls at 2 in the morning for YEARS.

 

(I still have to check on her every night, to make sure she's dressed and still has a diaper on because she's been known, even now, to take everything off)

 

It makes it REALLY hard to come here and read about how they have trouble homeschooling with a toddler underfoot. Imagine that toddler never leaving toddlerhood!!

 

Imagine wondering who'll take care of her when she grows up and you're dead and gone?

 

*sigh*

 

So...yes...I understand completely!!!

[Ottakee]

Yes, at times. Thankfully I have a few friends that have also adopted kids with special needs and they "get it".

 

I also have a wonderful friend that will watch my kids when I need a few hours to go horseback riding, take a nap, go out with dh, etc. That respite is wonderful.

 

I also get the "aren't you a saint" type comments as I have adopted all of my kids and we knew all about 20ds' special needs when we adpopted him at 7 1/2 and we knew that the girls (now 12 and 11) had special needs (but we didn't know all of them) when we finalized their adoptions at 3 1/2 and 2 1/2.

[Guest pblu9207]

Hi

 

I am homeschooling two high school teen girls. They are really into having friends, but its hard when friends do not understand what we are dealing with.

 

I thought I'd mention that bipolar/anxiety disorders/learning disabilities are often part of the disease that is rampant in pandemic proportions called Lyme disease. Undiagnosed or misdiagnosed, it can lead to worsening psychiatric symptoms, learning disorders, autism-like difficulties, as well as physical disabilities, and pain. http://www.ILADS.org and www.publichealthalert.org and www.lymeinducedautism.com are helpful starting points.

 

Peninah

[sandellie4]

I feel like this, too. It's isolating, and scary, and discouraging. I have a 17yo who has Asperger's and is trying to get her first job. The supervisors have been nice, but the kids she'd be working with, they are sooooo mean and exclusive. No one understands when I try to explain it. They act like I'm being overprotective. They don't have to think about their kids' limits. Most of them, when their kids are 17, they're thinking about how their kids aren't perfect, how sometimes they don't listen, and how they don't always get along. They're thinking that their kid will go to college or get married. I'm worrying about whether my dd will ever be able to live independently, about what will happen to her when we die.

 

I have a 9yo with speech problems and we were at a homeschool class, and all the kids were going up afterward to ask questions, touch the displays, etc. When it was finally my son's turn, he had a hard time getting the question worded. While he was standing there, talking but going too slow, one of the mothers, just butted in and asked her kid's question. People are so careless and thoughtless. If it's not about them, it's not important. I feel resentful sometimes. They are so lucky. I never thought this would happen to me, just like them, but it *did* happen to me. And nobody cares.

 

Sandy

[5knights3maidens]

Oh my, yes. Yesterday was so bad that I just cried. I cried last night while trying to fall asleep and even as the days go on I find myself just starting to cry when I think about dd. I've gotten so angry many times..which has never been me. I have always been calm. I believe it can work on your nerves. I worry about her life, will she have a husband that will love her and take care of her, will she find the Lord and serve him, If someone knows she has "issues" will they be mean to her and so on....

 

I just talked to my dd's friends mom and I just found out that dd's friend has asperger's (which I noticed something was different). She says she understands me completely and she didn't seem to want to "get away" from the subject..if you know what I mean. She was very encouraging.

 

I'm finding that if you have a child with special needs even the places you think will accept you, don't. (this is happening to a friend of mine.)

 

So, you are not alone.

[Twinmom]

You are not alone. Trust me, we have all been there...feelings of isolation, why are we different, I just want to cry, etc.

 

I'd tell you about my day with DD, but I'm too upset to talk about it. Just believe me when I say, I understand completely.

[chiguirre]

When I get really down, I try to think about how things could be worse. I replay all the stories I've heard about toddlers drowning, kids hit by cars, cancer (yes, I know this is a bit morbid), then I count my blessings that my boys are just autistic and that I have my NT dd, too.

 

I have no idea if this would work for others, but I thought I'd throw it out there because it helps me a lot when I'm feeling down or the boys are acting up.

[MicheleB]

When I get really down, I try to think about how things could be worse. I replay all the stories I've heard about toddlers drowning, kids hit by cars, cancer (yes, I know this is a bit morbid), then I count my blessings that my boys are just autistic and that I have my NT dd, too.

 

I have no idea if this would work for others, but I thought I'd throw it out there because it helps me a lot when I'm feeling down or the boys are acting up.

Counting our blessings is a good way to combat the feelings. I totally get what you're saying. And I think there are so many *worse* disabilities out there as well that I could be dealing with. So true.... Thanks. :001_smile:

[hsmamainva]

I agree!!

 

My two children with autism play on the Little League Challengers team here in our county, which is baseball for special needs children.

 

There's one little guy on the team who comes in a wheelchair. He can't walk or talk or feed himself. They still have to feed stage 1 baby food to him. He uses a pacifier. He plays with a rattle. He can't sit up or even hold his head up. And he's around 9 or 10 years old.

 

It really makes me stop and think that, while I'm spending 90% of the time trying to keep my 6 year old from running into the parking lot, at least she's capable OF running.

 

(And I have my other children, too!! My 14 yo with autism is more along the lines of Asperger's and, while being 'quirky', he doesn't demand, or require, the constant attention that my youngest child does, although he has his certain phobias and some learning issues.)

[Mommyof4ks]

I wonder if you are a part of a listserv or forum of other parents who are dealing with your daily battles. My 3 year old has cancer, and it was hard to cope when some friends did not seem to understand that this can kill him and even the common cold is a major issue for him. We are very thankful to have him here, and I certainly understand that it could be worse, but there are times when I need to cry to someone who 'gets it'.

 

It would be so hard wondering who would care for my child after my passing knowing full well that they will need to be cared for for the rest of their lives. That is certainly something that most of us cannot understand, and even an online support group is helpful in letting everyone just vent about that!

 

Wendy

Homeschooling 3 munchkins!

[enigma]

My son has a syndrome. He is medically complex and has educational issues that we are still sorting out. I really don't have any friends at this time. I haven't met anyone that I'm really comfortable with, or who seems really comfortable with me. It seems everyone I know with healthy kids thinks, "Wow, you have it tough," and go on to express their idea of what our lives are like. And their ideas usually only scratch the surface. It's actually much harder much of the time. And yes, that leaves me feeling lonely. I just trust that my present social dearth is temporary, and look forward to meeting someone with whom I can find some mutual understanding.

[ChristineMM]

Regarding what Sandy said:

I

 

I have a 9yo with speech problems and we were at a homeschool class, and all the kids were going up afterward to ask questions, touch the displays, etc. When it was finally my son's turn, he had a hard time getting the question worded. While he was standing there, talking but going too slow, one of the mothers, just butted in and asked her kid's question. People are so careless and thoughtless. If it's not about them, it's not important. I feel resentful sometimes. They are so lucky. I never thought this would happen to me, just like them, but it *did* happen to me. And nobody cares.

 

 

Wow that got me angry to hear about! That incident justifies IMO a conversation with that mother about what she did being totally out of line. I don't know if she is a mother you will ever see again or will see on a regular basis. I'd give her a polite but firm piece of my mind if I were you.

 

My older son (11) has two LDs which are pretty minor in the scheme of things but they are still hard to deal with as I have the same challenges with what other HSers say, worrying that he's not keeping up with the Joneses and more importantly am I doing enough or the right things for him.

 

I have a non-verbal nephew with autism so I see what it is like with a more rough road on the special needs arena. My heart goes out to all the moms dealing with all the various LDs and trying to homeschool them too. (hugs to all)

[Dani n Monies Mom]

I understand completely!!!!!!

 

My 6 year old is more like a 2 year old (esp. in her language abilities and actions) ... so it's like I've been stuck in the terrible two's for 4 1/2 years!

 

My friends don't understand what it's like when I can't leave her alone for a minute without her getting into trouble...when we've had to put an alarm system in the house to keep her escaping out the front door...that our daughter is as tall as my 8 year old son, and she'll be 7 in January, and still isn't potty trained...and shows no signs of doing so any time soon.

 

For years, she had a passion for taking her diaper off and smearing the walls at night. NO ONE can understand what it's like to wipe poop off of the walls at 2 in the morning for YEARS.

 

(I still have to check on her every night, to make sure she's dressed and still has a diaper on because she's been known, even now, to take everything off)

 

It makes it REALLY hard to come here and read about how they have trouble homeschooling with a toddler underfoot. Imagine that toddler never leaving toddlerhood!!

 

Imagine wondering who'll take care of her when she grows up and you're dead and gone?

 

*sigh*

 

So...yes...I understand completely!!!

 

Boy do I understand this! My dd not only smeared the walls, but it got so bad that she got the hallway, dining room, and ceiling fan. Sometimes at 3am, sometimes at 9pm, and once at SOMEONE ELSES HOUSE:001_huh::lol: We barley knew this family, but fortunately they had a great attitude about it. Enough that we could laugh about it as I helped her clean her home. It probably had a lot to do with the fact that her 16 yo autistic had the habbit of doing the same thing:tongue_smilie:

 

Complete potty training didn't happen until she was about 11/12, that was just last year, and sometimes I still can't believe it.

 

God has always blessed us with a lot of support. But I can say that even the most supportive friends and family can't entirely understand the fear and despair you can fall into. I've cried in my shower and on my knees many times.

 

You are not alone.

Ava

[Dani n Monies Mom]

Hey Kelly, if that was you, thanks for the encouragement.:001_smile:

 

Ava

[hsmamainva]

Yep, that was me!!

 

I didn't realize that I had to sign my name! :blushing:

 

I thought it told everyone who the rep was from

[katalaska]

I do feel really alone at times. All the other moms leave their kids and go out...we couldn't even leave our dd with a relative (much less a teenage girl from church or even another adult) if she was awake until she was nearly 6yo--and then it was while I was gone for 45 minutes to the vet! That was a red-letter day! There are relatives I still don't trust to actually watch her...they expect her to behave like a normal 8yo and she doesn't! She has a really good vocabulary so people think she understands the things they say, cause and effect, etc. but she doesn't.

 

And the stares...at the post office, when she would just make noises and I'd have to pick HER up while her toddler brother was well-behaved beside me...and then on our way out she'd HAVE TO stop and flick the doorstop up and down, up and down, up and down...and people wondered why I just didn't "make her behave."

 

The relatives who didn't understand that we needed them to clear out a closet and let us use a baby gate to keep our dd contained at night...why couldn't she just sleep in a crib or a bed like any other child?

 

The only thing that keeps me sane is my sister-in-law whose ds is severely autistic. Where she is now is where I was not so long ago, although her ds has more problems than my dd did. At least we can relate and commiserate and I can offer helpful hints for things that worked and when she tells me of the awful things he has done I can actually understand.

 

Sometimes, though, I feel bad because it seems that I'm complaining of problems that are so minor compared to hers... How can I really complain that dd is two years behind in social language and THAT'S why she has trouble with kids her age, etc. when she's lucky her ds can even put several words together?

 

I'm rambling...but yes, it can be a lonely place. Until my sil's ds was diagnosed two and a half years ago I felt like no one understood...and then suddenly, she was there. But for six years I think people thought I was exaggerating, overprotective, making it all up, etc.

[hsmamainva]

I can sooo relate!!!

 

The stares in public drive me crazy!!! My daughter has her quirks, too. Trust me....If you're ever around an escalator, and you see someone riding it with a little girl with blonde hair and blue eyes for hours, that's us! :blushing:

 

My family is just now starting to 'get it' about our youngest daughter. And they've become very encouraging ... although my MIL doesn't understand why I don't put her in public school with their "wonderful programs" :rolleyes:

 

My daughter also has a roughly 2-year language delay and that is her biggest 'issue'; it's more of a problem than her sensory issues, although the reverse was true when she was younger (then it was more sensory than language).

 

:grouphug:

[elizam]

Oh, I have been feeling soooo alone lately, I am glad you posted this. I am in a time of life right now where I don't know what is wrong with my oldest. He seems to be getting worse--with whatever it is he has, if he "has" anything. He is finally going to be getting a psychological evaluation--thru the juvenile justice system, because that is the only way we could make him do it. :sad::sad: Everyone who knows what is going on has said that is the only way they can see it happening. But I don't feel the love for him in those statements. I guess it is "tough love" and protecting him from himself...but sometimes I wish someone would just take the time to call him on the phone, ask him what's up and how's it going, etc....he doesn't have friends, really...just messed up kids at PS that I am scared for him to be around. Church people, homeschoolers...they tend to avoid him. It's hard! So hard! Is it going to be "he's just a bad teen" or is it bipolar or Asperger's...

 

Then my other 3 dc aren't perfect, either. 2 act pretty ADD...my oldest dd very likely is dyslexic, and my 9yo is not a great reader; he also has some dyslexic tendencies.

 

I worry constantly that everyone is judging me, blaming homeschooling, etc. My mom is not very supportive. We have no relatives nearby, and even if we did, it wouldn't help. Most of them are "messed up" in their own ways.

 

Now our S.S. class is going to do Parenting by the Book by John Rosemond. I used to love that guy, so common sense, so old school like my mom. But as my dc have gotten older and I realize that so much of that just doesn't work with my dc, or I just don't agree with it...I don't like his books nearly as much as I used to when I thought it was easy to be a "good parent." I skimmed some of the chapters yesterday and realized just how scornful Rosemond is of "labels"--he shoots down ADD, ODD, bipolar, etc. and basically says if you are a good parent, your kid won't have these "made up" labels.

 

There aren't many support groups around here, either. I guess most parents just get their dxes and fill a prescription. I wonder if anyone else is dying inside, wanting a friend, wanting to talk?