Feeling guilty | Autism PDD
I've had a bad Mommy day today. Maybe it's my hormones, having
just given birth 13 days ago, but Luke's stimming was absolutely
driving me insane today. I kept yelling at him and taking away
the things he was stimming with (e.g., spinning items and his favorite
blanket -- like what Linus has). Add to that, my parents returned
home today (after being here for 3 weeks to help us out before and
after baby's birth) and about 5 mins before they left, my dad SCREAMED
at me that unless we get Luke ABA training immediately, we're going to
have to institutionalize him. AND that I should "get off my butt"
and work to help pay for it. Furthermore, he expressed the
feeling that my husband should quit his (somewhat well-paying) job so
that we can move to a state that offers ABA services in their schools
and that I should work full time to support the family while my dh
looks for another job. My husband has the kind of job that if he
leaves the one he has, he'll never get another one! The top
salary I could make would be significantly less than what my husband
brings in ... there's just no way that would work.
So I have the guilt of being mean to Luke today AND the guilt brought
on my dear old Dad that I will directly be causing Luke to be put in an
institution if we don't get him ABA training, like, yesterday.
I just need to vent be/c I'm sitting here crying and I feel so hopeless
and helpless. I feel like a terrible Mom and that maybe Luke
would be better off if I worked full time and put him in a place where
they knew how to train him and teach him. I thought I was doing
the right thing by staying at home to raise my kids. Am I wrong??
Kellie
Oh so wrong...I think you're wonderful to Luke...granted I don't know you, but from I've read, I think you are remarkable.
I think we should have lunch!!! My brother in law was here over the weekend, and also was yelling at me "why aren't you working" and "Riley looks fine to me!" and "Maybe they should just take your kids away"
I was in tears for two days...like you, rethinking my whole life. He (they) just don't understand the investment we're making to help our kids, and in my case, refuses to see it.
We went from K a year (2 incomes) to barely scraping by, but the strides Riley has made in the year and a half I've been home are instrumental to his future...I wouldn't change it for the world. (so what if we're living on bread!!
We all have our own decisions to make about what we can and can't do, will and won't do....I keep thinking if only I was still working, and then realize I only lost my job because he needed me at home.
Big hugs to you Kellie...your son needs you and all that you do. He's young...theres plenty of road ahead of him to make great strides too.
~Lesley
OH Kellie,
I'm so sorry that you have been given so much stress to deal with especially after just having the baby. ALWAYS REMEMBER....You are Luke's parent.....ABA is a personal decision to be made by the parent...not the grandparent. ABA is very expensive also. NOT EVERY CHILD IN THE SPECTRUM needs to have ABA also. I would tell your father very politely that if he wants to pay for ABA then he is welcome to do so. That is if YOU decide that it is right for Luke. And as far as saying that your child will end up in an institution was WAY OUT OF LINE for him to say. I have a friend that has a son that has Low functioning autism with mental retardation and he is not in an institution. Your son is PDD-NOS...I just don't see that happening. Your husband should not quit his job so that you can support the family while he looks for another one. That is just ridiculous. I think that parents try their best to mean well but go overboard sometimes.....and during these times you just have to go " uh huh", nod your head......and then do what YOU think is best for your family and not what your parents think is best.
Don't worry about yelling at Luke......LOL Good parents loose their "cool" at times.
I hope you start feeling better about all of this....don't worry sweetie...your a good mom....just remember that. Also I think if you are able to stay home that it IS a good decision to do so. Not everyone can so if your able to then I THINK THATS GREAT!! Take care,
Karrie
Kellie!!!! ((((((((((((((supersized hug!)))))))))))))))))))
Please dont' feel bad hon, I can't even imagine you dealing with this after just giving birth 13 days ago...hello! Your Dad, though I'm sure meant well, could have used a little tact or some possitivity when telling you his feelings about Luke...I'm sorry you had to go through it sweetie...and as for being a bad mom, you are not, all mom's lose their patience...I think you need some help at home, especially w/ the new born and all. Maybe when Andrew takes a nap or something you and Luke could do something special together and you'll both feel better : )
I think your intentions of staying home to take care of the kids is a good one, I wish I could stay home, I'd like to think I'd be able to really help Nicholas more, but my job has the insurance that we so need (3 kids and me and dh w/ no ins is a big no no!) so here I stay and work p/t to help out...its not so bad...anyway Luke is only 2 and I dont' think his stimming is any indication your son will end up institutionalized by any means! Sometimes grandparents think they need to "suggest" what they think is best...and sometimes they are right and sometimes they aren't! Take it for what its worth...yes ABA would be great, do they have EI...do they have any services you could get for Luke? I would highly recommend ABA, my son has benefited from it so much...search around if they dont' have free services and sometimes fees will be prorated based on your family income.... Don't beat yourself up Kellie, I think you are doing super job...and I'm sure Luke will progress and when he does it will have a lot to do with your loving efforts!
Stay strong mommy, you're doing great!
hugs!
Ali
Kellie, I know you are having a bad day...but things will get better - I promise
.
First of all you just had a baby -your hormones are all out of wack.
After DS was born, I would just start crying about every little
thing-LOL! About Luke stimming more- remember that even typical
children have a regression when a sibling is born. It's just harder
with Luke. I've lost my cool with DS several times. When he wouldn't eat I would just say "Fine, starve then, see if I care." After all- we're only human. Try to take several deep breaths, clear your mind and proceed.
About the ABA- I highly recommend it- for several reasons. For one it makes DS focus and learn things he would otherwise be too distracted to learn. DS has been doing ABA for 6 months. When we started he was nonverbal, understood a few words and did a few signs. HE had no play skills. In 6 months, he has a greater than 100 word vocabulary, he's speaking in 2-3 word sentences, he can identify and name colors, shapes, body parts, Count 1-10. At daycare he independently chooses toys and activeties. HE is starting to parallel play. We've made great progress but we've got a long way to go.
Also Luke is awake probably 12 hours a day. No human being can provide stimulating activity for 12 hours straight. You're going to burn yoursef out. ABA provides breaks for me throughout the day. Even if choose ABA isn't right for you- I would suggest you hire several students-education OT, ST, social work are best. Find students with experience working with special needs children. Hire them for 5-10 hours a week to give you a break. You especially need a break now with a new baby.
As far as your father- tell them that your are sorting everything out and while you appreciate their concern for Luke yellling at you is hardly what's best for him. Suggest ways they can help 1. Watch/play with Luke 2. Financial help if they are able. Afterall if they plan on giving you an inheritance- now is the time so you can use it to pay for Luke's therapies.
Hope you are feeling better....
I agree that ABA is a WONDERFUL program for a lot of these kids. The problem is for instance with my son having a diagnosis of PDD-NOS he does not qualify for even medicaid here. If he had a diagnosis of Austism he would qualify and ABA would be provided. Our own private insurance will not cover ABA unless he has a diagnosis of Autism. ABA costs more than my husband even makes in a year so people in the same position as me as far as financial and diagnosis is concerned just can't afford it. I have no doubt that if my son were non-verbal and had no social skills or pretend play that he would have done well with ABA. Not every child qualifies for benifits to be able to get these therapies. They all should but they don't. I did get training in Lovaas and to be honest with you it was not benifiting my son the way it does other children, and I believe he will be better off in a social setting with his peers in pre-school. That's why I say it is a personal decision depending on your own childs needs.
Karrie
Kellie,
I am so sorry. Granparents, friends and family all need to take a step back and realize that Moms and Dads make the best decisions for their children and their family as a whole. Yes you have a child on the spectrum with special needs but you also have a husband and a new baby. It is balancing act financially, physically and emotionally and you have to try and meet everyones needs. You cannot simply sacrifice everyone else. There are budgets to meet and children to take care of, you simply do not need the added stress or pressure your father placed on you. Maybe he is the one with a problem, maybe he needs to learn how to support his daughter, knowing that she only wants what is best for her family as a whole, special needs and all..
Hugs to you sweetie I am very sorry you had to deal with that..
Well I know what you mean about the parents.- LOL. My parents are great with DS-unfortunately they live 2000 miles away- so they only see him 3 times a year, about a week at time. They don't really understand autism- but it doesn't really matter to them. They are just happy to see their grandchild. I usually spend a little tiime with- showing them what he's up to and what we're working on and they take it from there. I don't have to worry when they're here. THey are usually very positive about DS too.My-in laws- it's another story. They are really very nice people and they love to see DS- but I think maybe they're pessimistic by nature. They never really actively play with DS- and maybe it's b/c they just don't know how-or they're 10 years older. Plus I don't treally feel comfortable telling them "You can't just talk to him from the couch and expect him to pay attention to you"- so it's partially my fault. Anyway they hadn't seen him in 6 months and I was hoping they would be pleasantly surprised at how much progress he's made- but they didn't say a word.
My sister and SIL are great with him. My SIL just visited. She hadn't seen him in 2 months. She made tons of positive comments how she's noticed big improvements in just 2 months. It's nice to hear- b/c sometimes you think you're making it up
About the ABA- the negatiive re-enforcement sounds awful! I would definately not take Luke there! ABA is not the only way, there are tons of other options: Floortime, RDI, etc. You know Luke best, so you will know what he needs. Get some rest. When DH gets home you should give him the kids, take a bubble bath and drink some wine. You deserve it!
Wow ... thank you all so very much. I can't begin to tell you all how much your kind words and support mean to me!
Funny how when we're adults and have family of our own, sometimes our parents can make us feel like silly ignorant children again. My dad in particular is good at that. I actually did tell him, before they left for home (they live 8 hours away), that as much as they love Luke, being his mother, I love Luke even more
and that if they have any suggestions we haven't thought of as to how
we can obtain ABA for Luke, we're happy to listen. There's only
one facility in the area that provides ABA here and they have a bad
reputation for using negative means for obtaining results (like tying
the child into a chair to force him to focus ... in my wildest
nightmare I would never allow anyone to do that to Luke ... who is the
sweetest, most loving and gentle boy I know). We really would
like to give ABA a try but we need to move in order to do so and dh is
trying his best to find a job elsewhere. *sigh*Frankly, I think part of the reason I lost it with Luke today is be/c I've been feeling under so much pressure with my parents here! They tried to 'help' with things when the baby arrived, but they're not 'baby people' and they don't have a clue how to help to teach Luke things nor what we're trying to do to change his diet (despite my telling them numerous times), so Luke's no-dairy diet has gone out the window, he's been watching TV almost all day (whereas before he saw maybe a half hour a day), and everyday my parents have been telling me that they see NO improvement in Luke and that his therapies are doing nothing for him (ST, OT, and EI). I was yelling at Luke, but I think it was be/c I wanted to yell at my parents!!
Kellie,
Being with your children, if possible is always best.
There are parents who do not have this option, but you do, and you are the best teacher for your son.
My daughter and I took an ABA course so that we could work at home with myGS.
He is also a sweet gentle child, with few meltdowns
My GS wasn't diagnosed until 4 1/2, and it was simply too late for ABA.
He had advanced too far (fortunately) for it to be of any value.
I am sure in most cases it is excellent for younger kids.
Somtimes you can get a student to take the course and help you for a few hrs. as well.
Floortime is another thing you can do at home, and it is fun as well.
Luke is so young, and there is so much "panic" in the autism community about age.
Frankly I am appalled by the notion that 50 - 60 hrs. per week sometimes more of treatments are necessary.
Kids need time to be just what they are "kids".
My GS receives OT ST and Neurofeedback, and nothing else.
He was in a social skills class 3 afternoons a week, and in pre-K two mornings a week.
He is advancing very well.
He was non verbal at 2 1/2, and now at just past five has an age appropriate expressive language.
Don't knock yourself for being "human".
My daughter who I consider to be "supermom", has lost her temper out of frustration on many occasions.
When she feels out of sorts, and less patient, she puts on a video( or two) for my GS and doesn't feel the least bit guilty. It is her time out.
Relax and enjoy your new baby.
Luke is so young.. you have lots of time to work out what is best for him when you are fully recovered.
My best wishes to you
Bev
I just want to come and punch your father. That was the most terrible thing he could to to you in your state.
Something you must remember and your father must realize is that you are a family of four now. That means that you and DH must meet the needs of everyone. It is not right to drop everything you are doing in order to devote 100% of time, entergy and resources to Luke. Your newborn's needs must be met. If you neglect it, your new child may have a delay that you overlooked because of your 100% attention on Luke or the new child may have some animosity against Luke or you because the new child feels left out and unimportant.
DH and I made this mistake. We focused so much time and attention on Helon that we didn't interact w/ Phillip. We didn't realize this until he was evaluated and we discovered he had a speech delay (I still have concerns that he may be on the spectrum). Intially, we were told the delay could be because we did not interact w/ him like we did with Helon. I agreed w/ the doc/ evaluators because we didn't. It was a mistake and now we have changed it so we can attend to both kids equally. I have even had to drop on of my daughter's therapy sessions. I don't have regrets. We must do what is best for the family, then the autistic child. It makes no sense to deveote everything to the autistic child and not have a family left for the autistic child to come home to...or for you to come home to.
I agree w/ the poster who said that ABA is a personal choice. There are so many other approaches out there besides ABA that are successful. You just need to do your research and do what is best for Luke. ABA may not be the best for his personality and his needs. As you already know, every autistic child is different - they have different characteristics, personalities and needs. So not one therapy works for all. I know a couple parents who tried ABA and it just did not suit their lifestyle and the needs of their child, and family.
Whatever choice you make WILL BE THE RIGHT choice. Never thing that because you made one choice (that you were not sure was right) that Luke will fall behind if the choice does not work. Whatever you decide will help Luke. Remember that!
Also, do you have a local support group that you can rely on for personal support during these first few weeks. That will really help. Also, you might try to look into respite care. Maybe you can get someone to come in a couple times a week (who specializes in caring for special needs children) to watch him while you rest or take care of the newborn.
I know how tough it could be, just do your best. I know that Helon's behavior was worse after Phillip was born because her entire routine changed. I was home from work for 4 mos (which made her even more excited), a new creature was in the house and she wasn't doing her normal activities. It took a few weeks for her to adjust, but she did. Luke will eventually ajust to in time.
Hey Kellie....
*sits in the warn out new mom corner with you... smiles*
First of all big hugs... and i wish we lived closer *laughs* we could be a source of support for each other. As far as your father goes.... pffffffttt .... don't take it to heart... but stick up for yourself... this is what i'm learning....
On the fourth of July i took Zachary over to my grandmas house where everyone in my family was meeting for a cookout... well on the way over there Zach fell asleep... it was like 4pm... First of all, zach has had a MAJOR life changing event (just as Luke has) second of all He didn't get enough sleep for the last two nights and then had swimming lessons that morning. So i let him sleep. Well... my aunts husband started making comments when i said something about Zach not going to sleep untill 3am... (EVERYONE was up because Jaydin had bad gas). He kept going on about i should MAKE him sleep.... i stood up laughed at him and said... "First of all you have no "F"ing clue what you are talking about... Zachary is severly autistic and autistic childeren have sleep disorders.... so untill you learn otherwise you should keep your mouth shut." He kept going.... and my DAD stepped in and told him he better back off and that he was lucky my husband wasn't there because Chris would of thrown him outta the house. My aunts husband is not usually someone anyone talks back to .... so i was proud of myself. I've just come to a place where i'm not gonna listen to anyone else's crap anymore... specially from people who have NOOOO clue what it is like to live day in and day out with a child on the spectrum.
Second thing.... yesterday must of just been one of those days....i gave birth to Jaydin on the 25th... so i'm just a day behind you.... but MAN was Zach driving me CRAZY yesterday.... He was being SOOOO LOUD and spinning and running and hand flappin all over the place... i did yell at him a few times and ended up feeling guilty just like you. But this morning after having a nice long sleep (Chris stayed up ALLLL night with Jaydin so i could sleep and he's sleeping now *laughs*) i'm not feeling so guilty... i am gonna make sure to take sometime out and just spend some special me and Zach time tomorrow and leave Jaydin with my mom or Chris for a couple of hours... but i realize... every mom has a boiling point.... and you are probably right..... you were just irratated at your parents and wanting to yell at them... i think i was just TIRED *laughs*
I'm sorry that your father acted that way twords you. You know whats best for your children, not him. And I'm pretty sure if your mom is anything like mine she got all over him when they left for the comments he made to you, but after all he is a man and can't come out and apologize and say he was wrong for saying that to you.For the ABA, I agree with Karrie he can pay for it if he wants to. I know once we get a diagnosis on Dwayne if he is autistic or pdd, we wont be able to afford ABA for him either. I'm sure the therapy's he's recieving right now are fine and they are doing him a world of good. After all your little guy's past 3 weeks has been really rough, Grandparents coming in and staying for a while - which most probably was a big change in his daily routines and this new little person coming to stay at his house and taking alot of your attention, maybe that's why they havent seen any improvement in him.
As for losing your cool with your little guy, it's alright I'm sure everyone has at one time or another, I know that I have, your only human and you have alot on your plate right now. And I think its wonderful that you get to stay at home with your kids, I wish that I could, but financially we wouldnt make it plus me and the kids need insurance.
Remember you are a great daughter, wife & mother. So dont be so hard on yourself.
I am so sorry you had to hear that from your Dad. I am sure he ment well, but he was WAY out of line! We have come to terms with the fact, that until Owen is in school full time. I can't work. With so many apts. and so on..no one would hire me! We can't afford the specialized preschools, so we pay for what ever therapy we can...and then I do everything I can with him myself.
We actually just cancelled his ABA, because it wasn't working for him. His sensory issues are just too severe to sit in ABA..not he is in SI. then we will try ABA again later..I agree it is a wonderful therapy, but like you said NOT foe every child.
Just remember to *nod and smile* and do what you feel is best.
Everything I read on here that you post sounds to me like you are a great and caring mom to Luke. Don't let others try to run your life or bring you down. I can't believe your own father made you feel that way. No wonder you were feeling so upset! I'm sorry you had to go through that ordeal. But we all know you are doing the best you can for Luke, and I think that's all any of us can do w/ our kids...Nt or not. Take care.
Amber
Just a follow-up to this ...My mother told me today that my dad was crying when they left on Thursday. He told her it was be/c he felt so bad about saying what he did to me ... that he realizes that we're doing everything we can for Luke and that we kind of have our hands full with a new baby just now. So I guess he's not as ignorant as he seemed ... but I wish he'd said those things to me directly. :/ Oh well.
Thanks everyone for all your support. I'm in the new-Mommy hormone phase where I can't tell if the emotions I have are valid ones or if they're hormone induced, so I appreciate being able to come here to all you wonderful people and get some feedback and support!!
Hugs to everyone
Kellie
Wow.... I just thought I'd put my 2 cents in here....I think you're doing a GREAT job, & for your Dad to come down so hard on you....wow...I can't even FATHOM someone---let alone my own PARENT saying things soo mean!! OK, so as far as your "bad day", don't let it get you down, you JUST gave birth for goodness sake!! Your hormones are going nuts...They make you feel like YOU'RE going nuts....but you'll be fine...
I don't have any real "pearls of wisdom" for you, I wish I did, I just wanted you to stop, take a deep breath & regroup.
Good Luck..............................
God Bless you & your Family & keep you all safe!
LINDA...aka Tony'sMom...aka MWN64
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