You ever just want to be in denial?

[happycc]

Do you ever just want to be in denial and pretend you have kids that are normal/average?

 

I don;t really want to read books about autism right now. I don;t really want to deal it right now. Maybe I am depressed. I was hoping he was going to not get that diagnosis at all by 3yrs old.

 

 

I don;t want to even get an ultrasound or do any testing with my current pregnancy because I simply am not able to deal with it all. The thought of yet having another special needs child is overwhelming to me.

 

Maybe I am just pregnant but I just want my son to not have the pdd diagnosis and that he can be easy and average to teach at home.

 

I read and read all these treatments and options my head is just spinning and spinning and ready to just throw my hands up. I would rather work with the older kids who have a definite curriculum to follow...open and go AAS, FLL, WWE etc but not with this autistic child. I don;t know where to begin. I need a script. Something.

[Walking-Iris]

Do you ever just want to be in denial and pretend you have kids that are normal/average?

 

I don;t really want to read books about autism right now. I don;t really want to deal it right now. Maybe I am depressed. I was hoping he was going to not get that diagnosis at all by 3yrs old.

 

 

I don;t want to even get an ultrasound or do any testing with my current pregnancy because I simply am not able to deal with it all. The thought of yet having another special needs child is overwhelming to me.

 

Maybe I am just pregnant but I just want my son to not have the pdd diagnosis and that he can be easy and average to teach at home.

 

I read and read all these treatments and options my head is just spinning and spinning and ready to just throw my hands up. I would rather work with the older kids who have a definite curriculum to follow...open and go AAS, FLL, WWE etc but not with this autistic child. I don;t know where to begin. I need a script. Something.

 

:grouphug: I know that crushing depressing feeling when you first get a diagnosis. I understand that confusion at first---gluten free or not, this supplement or that one, meds or not.

 

But I can tell you that you don't have to automatically assume he'll be hard to teach at home. My 9 year old is dx'ed pdd and he's at grade level and I've never ever used any special curriculum or program. I don't see any reason why you can't use FLL, AAS, or WWE or anything else that you want with him.

 

My ds uses WWE, Sequential Spelling, Miquon math (he's moving into Saxon), Easy Grammar, SOTW, RS4K etc.

 

I can also tell you that things were harder when he was 3 and 4 than they are now. Just hang in there. Pick a thing and do it. You may have to tweak it a bit or change the way you present a lesson. Definitely first things first read Out of Sync Child Has Fun and learn how to set up a sensory diet.

 

Don't worry about him not conversing or talking--just tell yourself this---deaf children learn to read ;) and your kiddo likely isn't deaf. Are you in speech? Or OT? Those have been wonderful for my ds.

 

I wish there was a script too---just tell me what to do. But life isn't like that. I understand about fears with the next baby. I have two younger children and they are neurotypical, but honestly they aren't any more easier or difficult to parent. They are just three distinct and unique little personalities. In fact my nt 4 year old is a heck of a lot more of a handful than my spectrum kiddo was at that age, what's up with that? :tongue_smilie:

 

:grouphug:

[Kaleidoscope]

My dd with autism is very easy to teach if that's any encouragement.

 

She wasn't easy at 3... but at almost 8, pretty easy.

 

I do understand how you feel though. Some days I just can't face it and I just want to pretend it's all ok.

[Ghee]

:grouphug: Aw, honey, I know how you feel. My oldest (boy) was SUCH a needy baby, then my daughter came along and practically wrote out her own schedule. I remember being DISTRAUGHT after my ultrasound with my youngest (boy), because I just *knew* another daughter would've been easy. I was depressed for weeks, even though I knew I could have an easy boy or could've had a difficult girl.

 

It is so hard to find out that the children we love don't measure up to the outside world's expectations. It will get easier, both easier to manage and easier to accept. My oldest is 13, we still struggle with some things but I'm learning to adjust my expectations and make them more reasonable. It takes time.

[PeterPan]

If you weren't hitting this wall, darling, you wouldn't be HUMAN. I can't even imagine how horrible this must feel right now. I hit a similar wall when I got my ds's apraxia diagnosis. I went from wanting lots more kids to wanting NO more. It become overwhelming, realizing any more could also be SN.

 

But I will say that, fast forward almost 2 years, I'm calmer now, more resolute, and think it would be ok.

 

My advice for you, just my sincere advice, is to sit down every day and rub your tummy and say "I want this baby, I love this baby, this baby is good for my family." And say that and affirm it every day until you believe it. Say it when you don't mean it. When I was carrying my ds, a practitioner told me that babies can SENSE our feelings in utero. She counseled me to be happy and decide to ignore things that worried me, even if I didn't FEEL happy. It was good advice; I birthed a very happy baby.

 

So free yourself to enjoy this pregnancy. Maybe it's God's gift to you as a way to think about something other than your ds, an excuse to put aside the stress. There's nothing you've been describing that is not right-able or surmountable. It's expected that he's not on the norm. Free yourself. Add two years to everything and be surprised if he hits it earlier. Give yourself some grace here and give him some grace. After all, the child can only be who he is, kwim?

 

Are you doing sign language each day? The Signing Time videos are awesome and your library will have them. Sign language works and develops the language part of the brain, just like speech. In our early days of ST they used them interchangably. It might help you bridge some gaps right now and might let you see just where he really is. It was a shocking moment to me when I realized my ds's understanding of the signs was all PASSIVE, that he never INITIATED them. And then when I finally SAW him initiating communication that way, I knew we were getting a click. It gives you another way to skirt the speech issue and let communication happen to the extent he's developmentally ready to express. If his receptive language is there, that's good too, the first step.

 

It's ok for him not to be normal. I can't believe they set you up for this torture by telling you it somehow might "go away". Wow. I'm like you, just believing the best and gullible and hoping. So that's a horrible pill to take. But stop and reassess. Think therapy, not academics. Get the best therapy you can and fight for those interventions.

[Barbara H]

Needing to take time off reading, thinking about it, dealing with it... I really that's very normal and healthy. So I say that you should pay attention to the feeling and listen to it. Do what you can to set limits with yourself - it is okay to take a whole day or a whole week - just totally off from all of it. While yes it is the responsibility of a parent to deal with the future we also need to allow ourselves to experience the present as well.

[MomatHWTK]

Needing to take time off reading, thinking about it, dealing with it... I really that's very normal and healthy. So I say that you should pay attention to the feeling and listen to it. Do what you can to set limits with yourself - it is okay to take a whole day or a whole week - just totally off from all of it. While yes it is the responsibility of a parent to deal with the future we also need to allow ourselves to experience the present as well.

:iagree:

 

I have two books sitting next to my desk that I need to read but have not. I have to take thing in a little at a time. And if I were pregnant right now, all I'd be doing is sleeping!

[happycc]

this isn;t my first pdd child. My oldest son is 18yrs old and has ppd. He was exactly the same as my youngest but diagnosed with a whole slew of things because pdd just wasn't well known then although he did get Early Intervention but at that time any child who had autistic like traits---the moms were to blame.

 

He was very hard to raise and hard to teach. He cried a lot. He was extremely rigid too. He was very negative on himself and physically hurt me a lot.

 

He is a SOPHOMORE in public school now and wants to drop out. He just can;t do geometry. Flunked it among other subjects. Took three years of algebra!!! He doesn;t want to be homeschooled and ex husband supports whatever he wants-even when it doesn;t benefit him.

 

He struggles and struggles and last year tried to hang himself twice because of some kind of social issue and also not taking his meds. Last year he broke my wrist because I took his cell phone away for being disrespectful.

I am purely exhausted by him and NOW knowing that I have a 3yrs old just like his older brother. I am freaked out and tired and terrified about the future for him. He refuses to go back to the Regional Center as he just doesn;t like to be known with someone with special needs to get services. Luckily there are plenty of kids just like him roaming around the world that he mostly hangs out with the quirky wierd kids that have issues like him. Some are a bit higher functioning than him and has helped him manuever through some of the high school drama and social stuff. He has learned to take Bart and he has picked up job as a gymnastics maintenence worker (garbage man) and he is involved with church. But he is really really rigid in his thinking that he displays no grace whatsoever. It is all or nothing with this child. He does go on missions trips with his youth group and he has gone down to Mexico to build houses and such and to Arizona to play withe kids on the Indian Reservations. But in terms of truly making a living and supporting himself in the future. I don;t see that happening. He has two more years of high school to finish and he is nowhere close to acting like an 18yrs old.

 

So I guess that is why I am in denial. So does anyone have a grown child who has special needs and then suddenly has a younger child with the same problem?

Edited July 11, 2012 by happycc

[MomatHWTK]

Not yet, but once you have a child with SN, I think it's natural to be more aware of those signs in the subsequent children. And it is a let down when they manifest similar symptoms. But, you are also in a position to be more proactive and there were probably other factors present in your first child's life that are different for this child. Even with the exact same diagnosis, there's no way to know the outcome. Each person handles the brain dysfunctions so differently.

[Walking-Iris]

I was worried during my other two pregnancies. That's normal, but like Elizabeth said it's best if you can try to stay as calm as possible during a pregnancy. But honestly, there's no way that you can assume a dx of pdd means your 3 year old ds will be "just like" your oldest ds, or any other child on the spectrum for that matter. What's that saying, "when you've met a kid with autism, you've met one kid with autism." Basically, they are each so unique. Try to meet them where they are (your oldest ds as well) and adjust your expectations and/or disappointments to one of acceptance and unconditional love and support.

[AmyontheFarm]

:grouphug:

[happycc]

Updating on this post....

 

my son that I was posting about is still the same at 5yrs now. Very difficult to teach. Very difficult to have joint attention and eye contact. He just wants to sit and vegetate in front of the television. Hates going outside. Hates leaving the house. Just wants to sit and be a couch potato. Never really recovered from my depression about him but then 3rd child came out worse. So I guess things could always be worse. 

 

I was just getting out of my depression with this child and then number three was diagnosed. 

 

My pregnancy: my 3rd son is autistic too and nonverbal possible severe apraxia as well but uses sign language to communicate. I am just getting out of depression from this last blow almost a year ago now. 

 

My first child who is now 20yrs is moving back in with me. Just couldnt make it work living out in the world. Was in engaged but the lady moved near him (it was a long distance to begin with) and got to know him and his deficits and bailed out. He has lost several jobs mainly he couldnt learn fast enough. School...didn;t work out. Not sure what to do with him. 

[PeterPan]

Does your county have disability services?  Things are changing, so maybe there are things available now you didn't have even a few years ago?  

 

I'm sorry it's hard.   :grouphug: 

[Cammom220]

Yes. My DS was diagnosed with an expressive/receptive language impairment. Because his IQ is so high (mid 140s), he was compensating until this year (2nd grade).

 

I'm not so spun up about the language impairment- DS has many intellectual strengths that will help compensate and he is getting a lot of therapy....it's the co-morbid condition. I suspect inattentive ADHD. It's all there-- distraction, impulsivity, etc. I just haven't gotten the diagnosis. To be fair, I don't know that we would do anything different right now if we had the diagnosis.

 

I know for his sake, in the next year or so, I'm going to need a formal neuropsych-- I'm just not ready to have this confirmed yet. 

 

 

[Crimson Wife]

{{{hugs}}} There are moments when everything seems so overwhelming that the sinful part of my nature wishes this were the bad old days where kids with major SN's got institutionalized. No more dealing with red tape fighting our HMO, Medicaid, Cal. Children's Services, the Regional Center, the school district, etc. No more scheduling, re-scheduling, or chauffeuring DD to doctor's appointments or therapy sessions. No more having to research potential diagnoses, treatments, therapies, educational materials, etc. I could just drop her off and then go back to a (semi-)normal life with occasional visits.

 

I love DD too much to just wash my hands of her and I know that my going into "warrior mama" mode is her best hope for her future. But it *IS* exhausting and the temptation to just say "f*** it all" is something I struggle with. I almost broke down during church last Sunday but I turned my face up to the painting of the Virgin Mary and asked her to pray for me.

[happycc]

Crimson: Your post is so honest and real! 

 

Thank you! 

 

There are days I just want to give up and crawl under the blanket. There are days I just want to pretend everything thing is fine but then the rude awakening happens when one child nearly falls out of the window or disappears and runs into the street in front of a car nearly and I am smacked right back into reality. I break out in cold sweats at night worried about the safety of the two younger boys. I cry when I think about their future. 

 

It is bare survival at this moment. The only glimmer of hope I have in life are my 13yrs old twins who are doing well academically and behaviorally yet I feel sorry that they have to put up with this bs. It is them who have to help me chase the boys down. I have incontinent issues when I run. I can run but not as fast as them and when I run everything is wet. 

 

We recently had to fight our charter school who wanted to kick my 5.5 yrs son out of their homeschool program. I had to get a lawyer to fight fight fight. 

 

I had to get the same lawyer to fight fight fight Regional center again for my 2yrs old. 

 

I am not prepared to have 20yrs old son to return back home and fight fight fight with him. 

 

Why is life so hard? Why do other people have kids that are easier to teach or behave easier. Why am I the only one who gets excited when my 5.5 yrs old is able to make it to the bathroom on his own without screaming and crying? Why am I thrilled when my son didn't bite himself that day? Why am I ecstatic when my son learns a new sign when other people are thrilled when the kids the same age are speaking both French and English and Sign language.

 

I remember when they wanted to institutionalized the 20yrs old when he was 18 months. I couldn't conceive of it but looking back I can see how easy my life would have been. I remember so many times having to restrain him when he was raging and I had bruises all over my body from him. I am so nervous about my son moving back in after he broke my wrist a few years back. I am scared but he is my son. 

 

Why does taking care of special needs kids can be so painful? At the same time, there are moments they bring me amazing simple joy. 

 

 

The driving, the chauffering...really sucks. Dealing with ABA people coming to your house....making messes in your house sucks. All the evaluations that make you feel guilty, questioning your parenting skills or teaching skills or housekeeping skills--suck