Overwhelmed......
Sums up my life right now. Hello to everyone, don't mean to jump on after so long with such a negative vibe,( i see that has been a "thing" on here lately, i was to afraid to comment as i have not been here for a while) but things have been pretty tough. To put it in a few words: I Hate Autism!!! I hate what it is doing to my son. The past few weeks have been such a struggle, His teaching team that comes to our home is great, but they are pushing him really hard, and I know he needs it, I understand, but it's heartbreaking! I feel very "alone" after they leave, and I have a list(long) of things that I need to do w/ him, and I just don't feel like I'm doing a good enough job, because some times it's just so tiring! It just keeps hitting me, like waves, that he really has this. It's been alot to sink in. Needless to say, I'm seeing my counselor every week now 
On another hand, communication with my SS thru- dare I type it- myspace, is going well still, and it has been great to touch base with him often. I see that he feels "safe" by the things he writes to me/ his dad.(so for SS, it's "mysafe") LOL He has been dealing w/ alot though. He told us he spent Easter alone, cause BM did not make it back to Fl.( from Alabama) soon enough, god knows why, he gave a lame reason, and that was sad to hear. I wished he had called that day, but it seems he enjoys the time alone now. My DH was upset, but he wants to keep up the communication with SS, so he refrained from saying anything out of anger. DH said to me later that he tried to call SS that day, but got the usual result, no answer, no call back, so feeling sorry for him is not going to help nothing. It's too bad though. My thought was maybe BM was late getting back cause she finally has learned not to drive drunk! ?? Who knows. We just sent SD a birthday present today, it's on the 28th, so hopefully this year DH will at least get a thank you from her (it's not all her fault, she does not really know to do those things without being told, good job BM) So now the skids and BM will have this address to our home. I don't even care about that anymore, as there is nothing left to fight about. The CS payments are all caught up (yay!!!) and we have nothing more that BM could have or complain about, so, it should not be a big deal. Yeah, she may get a little out of joint when she sees we live here on the Cape by DH's family, knowing her she'll google our address right away just to check it out, but oh well. It does not change anything that involves her, or the skids. It feels really good to have the CS current, and not be behind anymore. It gives us a little more each month now to keep. We need as much as possible as our son's needs keep growing. He is a full time job for me right now. I'm giving it my all, but it is tough. Well thanks for reading, and I'm wishing everyone well. Keep praying. Thanks. Chel
- Chel Bell's blog
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*Don't feel like you are not allowed to come after a long while with a "negative vibe" this place is for venting, if we didn't have negative things to say, we would not have come here in the first place.
*I'm sorry that I can't really tell you what to do and what not to do about your son, as I have next to NO knowledge on the subject; but it seems like you are doing the best that you can! don't feel like you are not doing good enough... And I'm sure you will soon see the results of all this "heartbreaking pushing" from the caring team.:O
~You can see clearly only with your heart. What is truly important is invisible to the eyes~ Antoine de Saint-Exupéry's
Oh Chell...
Reading your posts about your son always brings me back to my nephew. He lived with my sister and mother and he was diagnosed with autism. They did NOTHING to help him. He just turned 5 in March and is still eating baby food only and not by himself must be fed, he still wears diapers and non verbal with exception of a few random words. So when you talk about the heartbreak and how tiring it all is all I can think is God Bless you and your strong will. My older sister and I were ousted by the younger sister and mother when nephew was younger but since their situation has changed dramatically and now older sister and I are more invloved in nephew care and in the times that I am with him it is tiring and sometimes easier to do it for him the things that need to be done but I push on because nephew will always take easiest way possible and so I have to push him to do it and so does older sister. I know it is hard and my hear hurts for you but you are doing this so your son and family will have chance at normal. Does your H family help provide respite care for you and your H? That is so important for you and your H to have someone who can come in and care for your son so you and H can have time to yourselves...everybody needs that. I know that is hard to leave him or to find somebody to stay with son as so many people are scared to watch him because of the autism and that is because they just do not know what autism is. I have such high regard for you and commend you for what you are doing for your son. It takes EXCEPTIONAL people to handle and raise children with autism. It is no cake walk job as you know all too well. I just read your posts and how you are getting to your son so early in his diagnosis that I am sad that my younger sister and mother did nothing for nephew and now he is suffering more than necessary because had he been worked with from day one like you are doing he would be so much further along.
I will pray for you Chell. You are doing great things for your son. Keep your head up and keep pushing forward because the reward of seeing your son do normal activities like all other children will warm your heart like no other way. Four weeks ago my nephew school called and said that he had used the peepee in the potty all on his own. Me and my sisters just cried like little girls when we heard the news it was such a MAJOR accomplishment for him. Now he is peepee in the potty every morning at 8:30. Sounds crazy to some but warms and swells my heart to know he has made that accomplishment.
Lots of hugs, love, and prayers to you!
By the way
the feeling of that you have about not doing it good enough and not doing enough...I think that just comes with the territory of having child with autism. We never feel it is enough and always worry we could be doing more but if there was something else you could be doing what part of the day could you work it into? Probaly no part as you are doing all you can do.
oh we missed you! I'm sorry
oh we missed you! I'm sorry you have so much on your plate. Children are exhausting, aren't they? So I wonder why if SS was alone on Easter why he didn't answer when your DH called? Weird. You're doing the best you can with your son though, and I'm sure you're doing a fantastic job, because your heart is in it. HUGS!!!
"Nobody will ever win the battle of the sexes. There's too much fraternizing with the enemy"
OMG, thank u StepG
sometimes it is easier to do it for him, and he takes the easiest way possible: boy did u hit it on the head. Living it right now, and when I slip up and do it for him, then I feel guilty, and need to start over again. Another tough thing is, no, my DH's family does not help out with watching him at all, and I must say, has been very dissapointing to me. They are wrapped up in their own world, so to speak, so they don't really want to do it. Now I have to look elswhere, but I have not been out without my son, in forever, and it is getting to me. My DH tries really hard, when he is here with me/us, he helps alot! But he does not really get just how hard it is for me/us not to get out, as he works alot, and has a very social job, and it does not hit him as hard as it does me. He does recognize that we need to get out together, but, like I said, it's not really being pushed, and I know he does not really know what to do just right now either. We looked on SitterCity.com, but it's expensive, we have to be careful with $$, but it's starting to look like the only way. My kids will be here in June, and my daughter is 14, I would not mind letting her help, she watched him last summer for me a couple of times,( while he was sleeping) LOL, so it was easy on her, and I don't mind going out at nite after he's asleep with them here, but , I still feel it's a lot, and it's sad that it's the only time DH and I have gone out. My daughter says don't be silly, she can handle it, and she loves her brother so much, and so does my other son, who is 11 now, but I still worry, it's just what I do! Thanks for your prayers.
"We cannot change the cards we are dealt, just how we play the hand."~ Randy Pausch
Hi Chel
I'm glad to hear from you again, but sad that so much is going on for you. I know so many people here comment on how strong we are to deal with kids with such challenging situations, but sometimes we need to let our strong tough exteriors down and allow others to hold the walls up for us now and then while we replenish our reserves.
You can pop on here any time you need to, we will always be here for you!
"To be, or not to be: that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them?" ~Hamlet Act III scene I
You are doing a great job
And it is a job, huh?! I don't know much but I am sure there will be an adjustment period for all of you while you are accepting the diagnosis and feeling your way as to what can be done at this point. God bless you for trying so hard - I know your son feels your love-!!!
And don't worry, you know we all say what we need to here, at any time-!! hugs
"A lie told often enough becomes the truth." - Vladimir Lenin
exceptional children/exceptional parents
Chel,
Trust me, I remeber those early years when my oldest son (who has Down Syndrome) was struggling with MAJOR behavioral issues- ADHD & ODD. YEARS of weekly exhausting trips to Children's Hospital Seashore House, which specializes in intensive behvavior mod. I can still remember dragging him AND my younger son (then 3) in the double stroller 2X a week with no support from my then husband (GEE, I WONDER WHY he's my EX???)
Years of a mobile therapist coming to my home and working with us, feeling like I was being constantly "monitored". Drugs that made him "zombie-like" until we found the right dosage. It was truly arduous and draining.
StepG is exactly right. Respite is KEY. Do you have a case manager for your son? Do you receive FDSS for him? You shouldn't have to pay out-of-pocket for respite care for him- that should be covered under FDSS! You need a break. And don't feel like a failure for taking one. Your son needs a mom who is "refreshed"- not stressed day in and day out.
One of my best friends also has a daughter with Downs...and she is austistic as well. I know, a "double-whammy"! She's a little younger than my son (she's 18) and she is absolutely exhausting for my friend to care for. And my friend is no "spring chicken"- she's 54, so she takes advantage of all the help that she is entitled to!
And so should you! Do not be afraid to ask for it.
And don't ever be afraid to vent- even the negative. NO ONE , except those who walk in our shoes, can ever imagine what we go through on a daily basis in caring for our special needs children.
"Of course things worked out nicely for Carol Brady...she had a live-in maid and Mike's first wife was DEAD!"
Hi Chel
DITTO to everything that Stepg and steensatthorne have said! RESPITE is not a bad thing and just make sure you a happy with the person looking after your son. You need to take care of yourself so you can continue being an awesome parent for your son!
hi
My nephew was diagnosed with PDD-NOS when he was 3. He was non-verbal at the time and we knew something was wrong. I was living with my sister and her husband at the time and saw all the work they had to do. The emotional toll was also great.
It may all seem overwhelming right now, especially because you don't always see improvement right away. But you have to know that it all makes a difference. Everything you do for him will make a difference. So keep your head up, stay strong, and keep plugging ahead.
I understand what you mean about it being heartbreaking at times. My nephew would yell for us (with tears streaming down his face) to help him when his team was working with him.
Here's the good news.....he is now 8 years old and in the 3rd grade. He is completely on track. He continues to have challenges, but is able to deal with them with the help of his parents and his team. Hang in there and take care.