Mom's with Kids on the spectrum....how Do You Do It??

One of my 5 year olds is on the spectrum (no official diagnosis but traits) and I can relate. He has AD/HD too and we just started him on Ritalin. I was hoping it would help more, and it has with attention at school. But behaviors at home-vocal stimming (drives me nuts) and arguing (new behavior just started this year) have been trying my patience.

ADHD + atypical asthma +"respiratory issues of unidentified etimology" here!

(meaning his lungs arrest, seal shut, fill with fluid both inside & out, and there's nothing we can do but just give him straight oxygen, massive doses of meds, and pray. Just did 9 days of that (and got a snarky letter from his school about "the importance of being in school"... I actually penned a quick reply that breathing trumps attendence in order of importance. 4 days of calls from Children's Hospital saying my son was in the hospital again, and wouldn't be in school... MAYBE he wasnt in school for medical reasons??? Just MAYBE???)

I also homeschooled for 5 years. His teacher says he doesn't see any sign of blah blah blah (aka annoying ADHD symptoms). Yeah. That's because I spent thousands of hours slowly conditioning, working with him, training emotional responses. But really, 5 years of work must be my imagination. You're welcome. Grrrrrr.

Different set of issues. My cousin is LFA. I don't know how my aunt does it. She doesn't know how I do it.

Something fell out of my mouth the 2nd month we were at Children's a couple years ago:

Volunteer: I don't know how you parents do it
Me, honestly startled: You mean we have a choice???
(I hadn't had a lot of sleep).

But that's what "it" comes back to, time & again

Never know how strong you really are, until you have no choice.

I don't know how YOU do it. You sound like you are an amazing mother.
Keep your chin up.
((hugs))

You sound like a good mom to me...

I have an amazing support structure to start off.

My son is 4. He was first diagnosed with a Sensory Processing Disorder by the age of two. Three brought us, ADHD, Opposition Defiance Disorder as well as Pervasive Develop mental Disorder(which is the highest level for high functioning Autism).

To make all this so much harder, I have also been dealing with some pretty heavy health issues myself. His diagnosis's has been a painful fight.

He is in school half day for now. Which is making me a little nuts at the moment.

I have to keep him 100% on his daily routine. If I know that I will be veering off the daily routine, I have to prepare him DAYS in advance. Or his whole world will be shifted and we end up with just one big melted down child.

Every morning he asks if he has school that day. If I say yes, he will throw a fit not wanting to go(no worries he always gets on the bus when it comes).

I always feel like I am fallen just a little short of being a good mom.

I find myself going into time out when we are having a bad day.

This past Saturday we were at Grandmas house. Zephyr was not pleased with having to pick up his legos, that he lost it. My husband and MIL are not normally around when the BIG BIG blow up happens. So she stood in disbelief while I struggled to bear hug him on my lap to get him to settle down.

I am constantly reminding myself, I did not to bring this on. I sometimes take his rages personal.

He is so poorly behaved in public, I have thought about making him an awesome necklace that states something along these lines: ''Dont mind me, I am just a curious and lovable kid that has trouble controlling my excitement''.

I have found that it is stranger's that are the most poorly behaved though. I have had more then one older adult yell different insults at my ability to ''control'' my son. Making statements like, ''you better get control of that one, or we are all in trouble'' too the older lady at the grocery store yelling ''Discipline your son needs discipline''. I understand ALL of these things. I discipline him to the best of my ability.

The thing is, people who dont have special needs kids, have no clue what a day in the life for you looks like.

I hate the fact I dread my son getting up in the morning. I just know for the moment he wakes up until he has fallen to sleep, my time is his. And I may not be receiving the positive aspects of being his mom.

I have a few friends that have totally stepped up to the plate to help with him, and the other two. That is the only way I have some sanity.

I find that strangers and extended family not close with him, have the most negative effect on how he behaves.

I was in a very bad auto accident while I was pregnant with him. My knee went through the dash board and was pretty badly hurt. From this I was on pain medication from 5 months on.

I had that sick sense right shortly after I started taking it, that something with my baby was going to be a bit ''off''. I did not know what it would be or if I was even right. Turns out I am right. I have asked his Ped. if he thinks they could have been related and he was pretty confident that there was no connection between the two.

The thing that is tough with special needs children, especially those on the Autism spectrum, they have no emotion that is moderate. They dont understand or process the social aspects of relationships. This in and of itself can be tough. You can not expect anything out of them really. And what is given is touch and go.

Rough days suck. There are evening I can not even bring myself to rocking with him. I look at him and get mad at myself for ever yelling(happens now and then when he is pushing those buttons).

I think about the black eyes, blood drawn from bites and the many other things he has done in a fit of rage, and wonder if this is punishment for my late teenage years.

The other thing I struggle with is the older two boys. They dont know how to fully grasp why brother is the way he is. I have to constantly tell them no firmly to something(like candy before dinner)...just to turn around and explain why Zephyr get whatever it was they wanted(this goes down like this, he asks me for whatever it is....I say no. He then sneaks in to the kitchen and get whatever it was to eat it. He shows no shame in it either. They will then pin me with the ''but Zephyr got one'', I return that with, ''your brother did not ask and I am not risking getting hurt by him to take it away''.

Honestly, I dont know how we moms of special needs kids keep it all together. I feel more often then not, that I am sinking. That too much is going on.

Right now we are currently waiting to have an evaluation done by a new Clinic that offer's in home Occupational Therapies.

We are also in the process of finding him a Child Psych. We are finding that our State ins does not recognize the need for a 4 year old to go see a Child Psych, most places do not take state insurance OR they dont see patients as young as he is. This portion of things for us right now is just the pits.

We trug on doing the day to day.

I fight my brain constantly on the fact that I feel like I have just fallen an inch or so too short.

It can get really lonely, even sitting in a waiting room with a group of parents with kids(at his Speech and OT location). We are all so busy in our lives and with the day to day with the kids. I hate the lonely.

I take life with Zephyr a day at a time. I gauge how he is doing each day with how easy I am allowed to offer him breakfast, get a new diaper and or Netflix movie going for him. It is an exact science that only he can change up.

All you can do is give it your best. That sounds so cliche. Forgive yourself for the bad days. Praise god for the great ones. Dont get too upset if things dont always go as planned. Remember he is probably just as frustrated with life as you are. Just think you can get all those emotions out and translated. He is trapped inside his head. You need to cut yourself some slack with all this in mind.

Give yourself the credit, YOU ARE A GOOD MOM. You have gotten him this for through life. t should be smooth sailing from here on out(ALWAYS KEEP YOUR CUP HALF FULL).

You can not do anything to change the outcome of today. You can however, do much much much more to pave the path for tomorrow.

If you need someone to vent to, share horror stories with or just need a break to get away from life....I am pretty much always here.

You are doing great! Believe this!!!

*hugs* I'm in a similar situation, although my son is bipolar not autistic. I feel the same way as you do. I expect the worst. I also feel like I'm not doing enough for my son. Really how many more drs can I take him to? Just the other night after a pretty stable week we decided to treat him and us to dinner out, and wow was that a night! He was hungry of course and wasn't happy the waiter messed up his drink order so he threw it at her and called her "stupid" she was understanding thank goodness! Well then he food wasn't coming fast enough so I took him into the bathroom to chill out and that started the rage. Well long story short 2 police officers come in the restroom because someone in the resturant called because of his screaming....sigh. Us moms of these precious children just have to get through it. Look forward to the good times and battle through the tough. Even at moments like that I would never change my son, he's my precious gift, hang in there momma! And if you ever want to talk you can pm me anytime :)

I hang with my girlfriends every Friday and we go out on the town 1x per month. I have caught myself on his bad days sometimes, just laughing. I mean I get done laughing and wonder if I somehow crossed over to the loony bin. You just do what you need to do. You're a wonderful mom and you'd do anything for your kids and that is how you do it. I tell myself this when I am at a low: There are people in this world that have worse things going on than I do right now. You will always find someone else with worse problems. Then I reach way down into my toes and pull out that last bit of strength that gets me through the day.

My son loves doing chores. How odd is that? I high praise him for doing an awesome job helping. I even call him an awesome possum. I am constantly praising him for every little great thing he does. It works well quite often but on his melt down days, he has to be shut in his room for 10 mins to calm down. If he does something really nice like get me a glass of water because he wants to. I tell him he was so nice bringing me some water and what a nice boy he is. If he can please people, it makes him happy.

I don't care what other people think. Absolutely no person on this earth has the right to judge anyone else unless you have walked in their shoes. i knew a lady who carried around a business card that was purple and on the card it explained what Autism was. She would hand that card to people who made comments to her. She said a lot of people would turn red and walk away.

I can tell from your post YOU ARE A WONDERFUL, CARING MOM! Your children are lucky to have you. I bet you are make a beautiful family. Hang in there momma! Lots of hugs to you!

Only good moms question if they are bad. So It sound like you are a good mom. You are not burrying your head in the sand, you are taking the bull by the horn. Getting him the help he needs and the discpline you can.

I found my son has some food triggers, and can get over stimlated. But Think about it if we are tired, hungy etc.. we are not ourselves. I think the same holds true for the kids. His food triggers are chocolate, gluten and dyes..

I pray and hope they find out these triggers with these kids all of them on the spectrum, ADD, ADHD, Sensory etc..

When growing up, I don;t reacall this many kids having issues. So I think it is something in our daily lives, food, environment etc. I hope the scientist figure it out and fast.

Chin up, things will get better. ((hugs))

There is something more you need to and that's take care of you. If you had been told this post before you had kids, you would be so compassionate. None of us are perfect moms, just good enough. You have so many challenges everyday, it must be overwhelming. Instead of berating yourself at the end of the day, you need to find something to look forward to, to give yourself a break.

Expecting your children to have a few melt downs a day seems realistic. If you were expecting to be so perfect that they never had issues, that's unrealistic expectations. You need to separate your parenting from the reality of their conditions. You can't be expected to anticipate better or control their environment to the point they don't do what comes natural to them.

While you are being realistic, look into some kind of respite care. Someone to give you a break. Some big churches run programs for special needs kids. Look into support groups that give you insider tips and support, start by calling a nearby hospital or your ped. Take care of YOU!

I work now and have for almost five years with children with autism (among other things). I did not go through your life, but I want to say this, You are definitely a good Mom and my goodness children like yours have made my life richer, saved me from grieving so much over my son who has moved far away and have added laughs and happiness and insight and brilliance into my life. I have a son with bipolar disorder. It is also difficult, but yes we do love them sooo much no matter what. So I say this and I really mean this, thank you and to all the moms who have autistic children, thank you for sharing them with me.

I've kind of lost touch with her bc we moved a little further away but I have a friend with 2 sons on the spectrum as well. I don't know how either of you do it but I have nothing but admiration for her. I hope you don't feel like others are judging you. Likely most people just want to support you and admire you. It sounds like you're doing a great job. I hope you can find other mothers in your area with children on the spectrum. I would imagine that would be a great support network.

I don't even feel I should be answering your post, but I can relate so much with it. We have good days and we have bad days . . . for the most part we have more good days than bad. When she was younger we have no good days. My daughter is 16 - you think I'd have her figured out by now. Just when I felt I had all her triggers down, she'll get a new one. Then I'm not sure what's teenager and what's Asperger - so that's a whole new set of issues.

I get really frustrated with her because she doesn't get it. In her head, she thinks she's got the world by the tail and can't wait to move out and live on her own - this is a girl, who doesn't NOTHING around the house, doesn't pick up after herself, I have to clean her room, I still remind her to shower or that she needs to wash her hair, and to shave, I have to remind her to shave her legs or armpits. Yet she thinks she going to get a job, get an apartment and go to school full time. She will go on to college (most likely a tech) and live at home. She has all she can do to keep up with high school and I help her a lot. I do so much for her and then she's blatenly disrespectful - it's very hurtful. She says things when she's in a meltdown that I know she doesn't mean, but it's still hurtful.

But, I have to remind myself, I am the adult, she is a child who is learning to function in a world that thinks differently than she does.

I remember being in a therapists office once, she was crying because why does she have Aspergers, why does she have to be different, she just wants to be normal, like everyone else. It was then I realized how much in common we had, because I was wondered why I had a child with Aspergers, I wanted a normal child, I wanted a child like everyone elses. But you know what, no one in normal -we all have different/weird quirks about us. My daughter has learned to appear "normal", in fact, her teachers don't know she as Aspergers and she's functioning just fine . . . come into our home, and you'll see a completely different kid. So, I figure God gave her to me for a reason, I just try to cope the best I can, and help her cope the best she can - together we will get through this.

I will say, it's gets easier the older they get becasue they are aware they are not like everyone else. They try harder to fit in. She has a few close friends and that's it. and that's ok. I'm a very outgoing social person, it's hard to see her quite and not talking to people, but that's where she's comfortable - I have to respect that. Respect the fact that she is different and needs different things.

My best friend has a child with Down's Syndrome - he's a year old than my daughter. We spent a lot of time together and she made the comment - she's lucky that her some has physcial features to let the world know why he acts the way he does. Because my daughter looks normal and would have a meltdown in public, I was looked at like a bad mom.

Anyway, PM if you'd like - I can share somethings that worked for my daughter when she was your sons age.

My eight year old daughter has an ASD - she is moderate along the spectrum. (Sorry, in the "my child with autism is closer to 'normal' than your child with autism" contest, I forfeit:^) ) One huge unifying factor I have noticed among mothers of children with autism, regardless of functioning level, is that we all think we suck. In my case, it comes from putting out so much effort and getting so little in return. We are good moms. We just can't use our children's behavior to measure it is all.

There is also the double whammy of the chronic grief. DD is an only child, because the risk factor of a sibling with autism is just too great. So I am sad about the one frickin' lousy healthy child I wanted -- not even boy or girl! just healthy! -- and didn't get, but also about not getting to have a second pregnancy and child.

So yeah, I "cope", mostly by living in the moment and trying to focus on the task at hand. As you know, when you have a child with autism, there's always SOMETHING to do. And thank the gods I have my art and writing and an extended school day and advocacy work and Angry Birds and dark humor and all the other great things that help me thrive.

Best of luck and hope this helps.

PS: I am with you on the unsolicited feedback from parents of neurotypical children. What works for me- and I would not recommend this for everyone - is having a stable of smart-aleck replies at the ready. eg - "Isn't it amazing that so many children nowadays get diagnosed with autism? This never happened when we went to school!" "You are absolutely right. When we were kids, she would have gotten slapped with the R-word and shoved in the basement classrooms." As you can tell I am not real big on the whole "but they were only trying to help" angle:^)

All four of my kids have ADHD, the older two turned out amazing. It is pretty cool when you have ADHD kids that people look at and wish their kids were like that, ya know? So I kind of look at Andy like god saying, well you rose to that challenge, now try this!

Total learning curve but I kept the same mantra I had with my older two, I will not allow you to accept you can't do something until you prove you can't do it. That may sound odd but all I do is assume he can do anything a normal kid can if he puts his mind to it and functionally he is right with any other nearly 14 year old. Socially he is out there in left field but that seems to be coming with age as well. :) If then he can't do something, well that is the disorder and we figure out a plan to compensate.

For whatever reason 7 to 10 were a roller coaster. It is easy looking back since I am out of it but there were times I was terrified he wouldn't work through all his issues. His temper became so out of control he was in the hospital for several months trying to teach him to self control while working on the correct meds to help him along. Talk about questioning am I doing the right thing! I mean I was allowing my child to stay at a hospital! I felt like I was pawning my responsibility off on the hospital workers! Even though I knew I was not capable of helping him like they could I felt like I should be trying. Thing is when he finally got out he had the tools to work with me to get better and he has.

There is no rule of thumb for these kids. Andy's psychiatrist is a researching doctor. He loves having Andy as a patient because Andy has managed to progress well beyond what conventional wisdom said was possible. A lot of what we do with Andy is being suggested to other parents of his patients, I think that is pretty cool. :) Thank god the doctor can tell what is what because if you asked me what we are doing right I couldn't tell you.

Anyway, rambling here. My only real advice is don't get so vested in something that you don't see there might be a better way.