Having a tough motherhood

Abby, please don't feel guilty about how you are feeling. Yes, there are people with much more horrible situations, but that doesn't have anything to do with the fact that you are struggling right now with the situation that has been handed to you. I'm sorry you are going through such a rough time.

My son had a periodic fever syndrome where he had high fevers every three weeks. There were times when I thought I couldn't stand it another minute. Then I would feel guilty because other people have kids who are dying of cancer. But someone else having it worse didn't change the fact that J's sickness was sometimes more than I could handle. You need to find a way to take care of yourself in the midst of this, whether it's finding a satisfying hobby, getting out for a regular evening out with a friend, or even just venting here.

I know it must be very hard to be dealing with these issues on top of GD. I just want to say that it might not be different with girls. My SIL has two daughters. They are both autistic. I don't know if she will ever really have the chance to have a real conversation with either one of her daughters. Yes, autism spectrum disorders are more common in boys, but they happen in girls too. And it doesn't sound like it's very certain that your son is even on that spectrum. I hope as he matures it turns out that he was just delayed and he catches up.

And I'm the one who put my parents through the horrible GI journey. I was diagnosed with celiac disease around the time I turned two. If that turns out to be your son's issue, please send me a pm and I can give you a lot of information. Also if gluten issues are suspected in your family, you might want to get your older son tested too. Sometimes celiac shows up as autism-like symptoms, and many autistic kids improve dramatically on a gluten free diet. My nieces are on a gluten free, casein free diet.

 I do sympathize with you. You are walking a hard road right now. Sometimes it is very hard to see our blessings in the midst of our troubles. Don't beat yourself up for that. I hope things get better for you soon.

Poor Abby. I seriously can't even IMAGINE what you are going through. It must be so, so hard to watch and know that he's not like the other kids, but not have any answers, any reason WHY, or what to do to fix it. Don't sell yourself short...you must be an incredibly strong woman, even if you don't always feel like you are.

It's glaringly obvious that you love your little boys to pieces, problems or not. I'm sure this specialist merry-go-round is excruciatingly annoying. I've felt like they're just out for more money many times, and I'm not dealing with a 1/4 of what you are.

I'm sorry I don't have any advice other than to hang in there...and to smack your dad for me. There has to be some other reason that Wolfie's not gaining enough weight. Maybe it's as simple as a vitamin deficiency (which is not your fault!!!!)- being low in something can do a number on your system.

I wish I lived closer to ya....I'd come over and give you a giant hug.

sailormoonmomma:

babygirl dreams:

I am amazed at people who have special needs children and aren't bothered by it. I think they are either really highly evolved or just more removed from their kids? I don't know . I just know I can't relate.

 

aw maybe they love their kids unconditionally. I know that my friend who has a DS with downs never complains and  is so proud of him when he achieves goals. I must say that I love that little boy so much too

We should start a support group for us moms with children who have special needs. For example my almost 6 year old is STILL no completely potty trained. Its hard when you see other kids just get up and go potty but I still have to wipe my big kids butt and clean up his accidents.

We should email Maureen about a forum for us.

That sound like a good idea. I think quite a few of us have sons with speech delays. Seems very common among boys.

Don't feel bad about wiping your sons butt. My older one is gifted and I still have to wipe his butt! I guess he figures better me than him.

Hey ,

Have you tested him for celiac disease? I know my sons preschool teacher suggested it. SHe says three of her daughter's friends have it and her husband has it too.

I am going to test my son.

Alot of children that have celiac have poor weight gain. THey also have delays in speech and seem autistic like.

Abby- just wanted to let you know that I can SOOOOOOO relate.  My DS1 has his "quirks" too.  He was in speech for articulation and OT for sensory-integration.  He's a "sensory-seeker" meaning he's always trying to get sensory input for his body, more than the average person.  As a baby he was a headbanger and when I held him he would bite my shoulders till they bled.  He's a terrible sleeper- 7 hours a day at his worse, up by 5am every morning (makes me want to cry every morning).  My first GD moment happened when he was 18 months old.  We were at a park with our little playgroup.  There were 2 of the cutest little girls in the group and they were having a very tender moment of hugging each other and holding hands.  All the mommies were oooohing and aaaahhing...then DS walked up and pushed them both down.  First day of preschool he chose the cutest little blonde-haired girl to push off the slide.  She got stitches in her forehead and wore a bandaid for the rest of the year (I think her mom just wanted to rub it in to me- honestly, who needs a bandaid for a whole year!!).  Anyway, I've had more moments like these than I can count.  DS isn't a bully, he's not mean, he just doesn't have any impulse control and can't seem to keep his hands to himself.  It's pretty much made my life hell since no one wants to be friends with us after a few playdates.  Big source of my GD.

Do not feel guilty for one minute about how you feel.  Having a challenging child is no small thing.  It's different than having a child with an obvious ailment or disability like Downs.  Then people compliment you on your strength and respect the challenges you must go through.  When it's just a delay, or weird quirkiness or behavior issues like my kid, people just think you're a bad parent or your child is a bad child.  It plain old sucks- there's no way around that.  Hang in there though, and vent to us anytime

Mightymitey:

Do not feel guilty for one minute about how you feel.  Having a challenging child is no small thing.  It's different than having a child with an obvious ailment or disability like Downs.  Then people compliment you on your strength and respect the challenges you must go through.  When it's just a delay, or weird quirkiness or behavior issues like my kid, people just think you're a bad parent or your child is a bad child.  It plain old sucks- there's no way around that.  Hang in there though, and vent to us anytime

Yes! When your child looks normal and cute and he is throwing a tantrum people assume you are a bad parent.

 On the first day of preschool my son was screaming and not wanting to stay. Another mom glared at me put her hands over her sons ears and told him not to look at that boy. I felt like a freak. All the teachers were staring too.

 I was like could I have some compasion here? I have been to neuroligists , speech pathologists , behaviorists, occupational therapists, developmental therapists, homeopathic doctors.

I even went to see the author of 123 Magic.

It's not like I am not trying. It's just that nobody can find anything wrong. He has these times were he just zones out and he is really uncooperative and he seems maybe delayed? But then most of the time he is bright, social, ahead of his developmental milestones.

The preschool teacher suspects allergies and maybe celiac . So here we go again.

I am frustrated, just really frustrated.

sailormoonmomma:

I whine a little but give myself a big slap in the face because DS is healthy and I buckle up and help him in his advancement. My BFF has a son with Downs and I have NEVER heard her complain.

What exactly is so offensive about complaining?! - You would rather women pretend & hide their feelings till they just implode with guilt & misery? Maybe your friend is afraid to complain in front of you?

Slapping yourself in the face might work for you, that's great, but not for everyone - Some people feel better from expressing & sharing their feelings & why not?

babygirl dreams:

I even went to see the author of 123 Magic.

 

The author of 123 Magic is my best friend's father! Now she's using his methods on her own kids! I hope he was helpful to you. He has had his own experience raising a challenging son, as well as all of his clinical experience. He's a great guy.

Mom2rj -- Just wanted to mention I found 123 Magic to be very helpful also and have recommended it a hundred times -- in case you get a chance to pass along my praise!

Abby, I'm sorry you're having a tough time.  Like many of the PP's said,  we can all think of people who have worse problems than ours, and we should always try to keep that in perspective and appreciate our blessings; but knowing that somebody else has something worse does not erase the difficult situation that you have, does not lift the burden from your shoulders.  It is understandable that you feel overwhelmed sometimes and like you cannot cope anymore.  

I sympathize with your feelings that specialists aren't helping.  I also had a bad experience with an expensive, time-consuming specialist, who diagnosed my son with Asperger's after speaking with us for 5 minutes and before ever even talking to my son.  (He was wrong.)

 

Well, I was up most of the night last night with Crabbyface McFussybutt and had a lot of time to think about this thread...

When I was researching autism, one of the most interesting books I read was written by an anthropologist with an autistic daughter, and he went around the world and studied autism in different societies.  He found that in the less technologically advanced societies, people with developmental delays actually fit in quite well (far different than the media-presented stereotype, that in the 3rd world everyone different is shunned and persecuted).  People in less developed societies don't have the same kind of narrow definition of 'normal' that we modern Americans do, and so individuals with differences are not pressured to conform to a societal norm they may not be able to live up to.  Instead they are allowed to develop along their own timeline, and encouraged to find their own niche and contribute to society in whatever manner they could.

What we think of as normal child development is a level of achievement that is unprecedented in human history.  Don't we all have a vision of a normal child as being exceptionally bright, athletic, always well-behaved, diligent at schoolwork, invariably kind, never moody, etc.  This seems like less a definition of a normal child and more a description of the perfect child.  It just seems like there is a trend towards medicalizing all manner of childish behavior - but they're kids, they're supposed to be childish sometimes.  Not everyone is going to be physically coordinated, socially outgoing, or good at every academic subject.  Kids are under an unbelievable amount of pressure to live up to an unattainable ideal - they know only too well that they're not 'good enough' for us, but they are not capable of living up to these expectations, any more than a newborn baby is capable of being potty trained.  You can push a child to potty train before they're ready, and even have some success if you're willing to dedicate your life to it, but in the end the child will develop on his/her own timeline.   

My DS 1 was (and still is) exceedingly weird too.  When he was little I tried everything to make him just snap out of it and act normal, but nothing ever worked and I spent years driving him and me both completely nuts.  At some point I just gave up trying and immediately he improved.  The pressure I was putting on him was doing nothing to help him, and in fact was simply aggravating his behavior, by making him so anxious and desperate to please me (an impossible task) that he could barely function.  No wonder he was such a weird little duck.  But you know what, he's grown up now and he has a job he's very successful at, he can play the guitar and sings in the church choir, he has tons of friends, he's active in church and charity and is very well loved, he's academically successful and is going to college in a year.  Nothing dire came of his weirdness and a lot of things that are very wonderful did.  He's eccentric, but he's special, like all the other oddballs out there, many of whom are extremely successful.  You don't forget meeting my son.  But normal people are a dime for thirteen.    

I know it is soo difficult to abandon that idea of normality that we hold in our mind's eye, but for our children's sanity and our own, I think we have to do that.  Can you just take that idea of what normal means to you, and mentally write it on a piece of paper and stick it into a box and lock it?  Just take that vision off the table entirely, and then start over again with your child on his terms, without any expectations of how he is 'supposed' to act.  Absolve him of the need to please society's expectations, and just be with him in his world for awhile.  In fact, this is one of the tenets of 'Floortime', which is one of the standard therapies for autistic behavior, but it works equally well on all children.  Don't try and teach him anything, don't try to hold him to any standard of 'normal' behavior.  Just be with him, do what he is interested in, and give him a safe place to exist, just to be himself, in one little corner of the world.  Let him have the freedom to pursue his own interests, even if those interests currently consist of learning the names and special abilities of all the Pokemon.

If you feel that the constant array of medical specialists is getting you somewhere and is helping your child, I am happy for that and I wish you all the best of luck.  If not, it just seems to me like your child might be getting the message that there is something wrong or defective about themselves, and to me this just seems like not the message they need to hear when they're struggling.  JMO...

As always, big hugs to all who are hurting - I wish everyone much joy and peace of mind as they travel the journey of life.

Thank you Kristin for writing that.

You know through all of these evaluations I always thought these people expect way to much from these kids.

I also read somewhere that the standards are based on girl development not boy development.

It seems everyone that has a boy in my town is in speech therapy . I am not exagerating. It is alot.

I also wonder if it is just so that these therapist can get more money from the state. I really do .

THe social worker told us that our town has the post kids in therapy in the state of Illinois. Our county has the most kids in ILLInois too.

We live in one of the richest suburbs in the the chicago area.( We aren't rich . We live in the smallest house. )

SO it isn't that these kids are in a poverty stricken area. I really have to wonder if it is perpetuated by greed. ALl us poor moms are so distressed and it could be for nothing.

Babygirldreams - a book you might want to read is, "Why Gender Matters" by Dr. Leonard Sax.  I have pretty much read every parenting book ever written (feels like it anyway) and I just read it last weekend.  It is absolutely the best parenting book I've ever read bar none, particularly for raising boys.  I just can't praise it highly enough.

According to Dr. Sax, a lot of child development info was either only tested on girls, or found only to work on girls but the experts put the strategies forth as if they work equally well on all children of either gender. 

Ahimsa_Malozzi I'm not saying your son has autism, but having a son myself, I have not let my doctor give my son the MMR shot, and his doc and everyone make me feel like a bad mother over it. They tell me if he got one of those diseases he could die and he really needs the shot. But so many other doctors and parents believe it is the cause of many cases of autism. I am so afraid of autism... Please look into Jenny McCarthy's book Louder Than Words, their are all kinds of levels of autism, it may help you heal and connect with your son in ways you never imagined weather he has it or not. Just the fact that there is something there with him and you don't know what... this book will help you. Please look into this!!!! If you ever want to talk, I am here. I have the same type of GD, its not that I have a lot of one sex and desire the other, I just only want boys, it seems you would have been happy if all you had ever had were girls. I understand.

Hi Ahimsa,

I just wanted you to know that I understand your pain and I support you in your feelings.  My 5 year old has been going to specialists and has been in therapy for almost 3 years now.  Although autism was ruled out, many still suspect Aspergers.  His official diagnosis right now is Obsessive Compulsive and Generalized anxiety disorders.  His "unofficial diagnosis" as of the latest specialist 2 weeks ago is ADHD.  I have been put the ringer for years now and nobody has truly been able to figure him out.  He drives me absolutely crazy to the point where I am in therapy and on medication to be able to deal with him and my DS #2 who tries to model DS #1's behaviors. Both DSs torture my 1 yr old DD and basically I can never leave any on them in the same room together in any combination.  I resent everyone around me with normal children.  I don't know where I'd be without my therapist.  And this website is also a "therapist" in a way, because we should all be allowed to vent here and not be judged for our feelings, especially when we are feeling guilty about them and need others to just listen.  I am here for you.

Hugs,

Lori 

I think you're being honest with your feelings and they're just as valid as any other feelings.  They don't define you as a mother.  You don't even have to convince us you love your children.  Of course you love them.  But, sometimes things are difficult and along with difficulty can come ambivalence.  Go easy on yourself.  It's tough.  We'd all be lying if we said we never had bad feelings about our motherhood or our children.  It's certainly not easy and you have the added burden of additional doctors & specialist visits.  Until we walk in your shoes, which we never will, all of our shoes our different, all we can do is offer our sympathy and comforts.  Sending you a great big hug!