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I've lost faith...please help!

Posted by on Dec. 31, 2012 at 7:57 AM
  • 18 Replies

My son is 9 years old as of December 9th, 2012.  He has had quite the developmental and medical history. He was born premie; 13 weeks early. Developmental delays were apparent by 6 months old. He began having seizures at 11 months old. ADHD symptoms were obvious by preschool. He continues to have these issues today. He has yet to be diagnosed with ADHD, but does recieve medication. He was just diagnosed within the last year with PDD-NOS & Moderate Intellectual Disability.Today, most of his development is that of a 2 year old, and he has behavior issues that reflect that. :)

My son is an incredibly sweet kid. Very charming and can be incredibly funny. As with many kids with his type of disabilities, he doesn't have much recall. He needs step by step instruction daily for most things, such as bathroom duty & washing in the bath/shower. I've incorporated PECS visuals for his bathroom routine, but just recently he is neglecting to even turn on the light before peeing all over the toilet in the dark! So my own personal issue here is that I have lost faith that my dear, wonderful boy CAN & will grow and learn. I am not expecting 100% independence. I am just meaning, the babysteps we work with our children on daily basis. I need motivation and my faith restored that it is worth it to work with my boy, and not just feeling defeated and frustrated everyday.

On a similar note, my son is repetative in his play. He loves to cook and anything related to kitchen play are things he can do ALL day. It is extremely amusing to me, and I am so proud of him. Cooking is the only area where he is really creative. However, he does get stuck in doing the same thing over and over. Other areas of play, he is not too imaginative, but he does enjoy trucks, and his favorite vehicle is the bus; specifically the stop sign on the bus. ;) I love that he has such strong interests, but I've found that I have almost no interest in taking part in them. On a daily basis, I have no idea what to do with him to spend quality time with him. He invites me to "watch" him cook, and he wants to offer me food and such, and coming from a preschool background, this is great, but it is literally all he does, and I haven't felt too obligated to take part in it recently.

I would really like some compassionate motivation, suggestions, advice, and maybe even your own stories in how you interact with your Extra-Special child on a daily basis. It would be really helpful to get a lil boost in enjoying my amazing boy again. Thank you all in advance.

by on Dec. 31, 2012 at 7:57 AM
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by Kari on Dec. 31, 2012 at 8:47 AM

First of all let me say he is beautiful! What a handsome boy...

You certainly have your work cut out for you don't you? Wow, it is a lot for anyone to handle. It sounds to me like you could use some help. I wonder if you could find a local teenager that might like an after school job working/playing with your son a few days a week to give you a break? I don't think you can expect yourself to give him all the attention he needs and not get burned out. I wonder if there is more help available in your community for you guys? I find that when I get a chance to refuel I can come back at the issues of parenting fresh. 

Heading off to work but will write more later, I feel for you and wanted to write a quick note to let you know I will be thinking of you while I work...more soon.  xoxo  

by Platinum Member on Dec. 31, 2012 at 10:19 AM

I have the same fears for my ds and he is only 2 1/2. I watch other children his age and I want to break down in tears. Then I think about all he has accomplished this year and I try to keep that in mind. Our children are very special. They remind us that the world may not be perfect but is still so beautiful. That even after the worst storm a rainbow always follows. This is our life stormy but always beautiful in the end. Try to remember that any progress no matter how small is still progress. 

I also understand about not having the interest in his play. My ds only wants to play with his blocks and I have built with them way more than I ever wanted to. Sometimes I find myself wanting to hide them from him but that wouldn't be very nice of me lol. 

We try so hard sometimes to be and do everything perfect for our children we forget we are human. We have our flaws. We have days when we want to yell from the rooftop we are angry and done. We have days when all we can think about is how different it would be if our child didn't have ASD. I think this is ok to do.

For me it helps to keep my faith in God. He has his reason for my ds being ASD. I may not understand it right now but my trust in Him is strong. 

by on Dec. 31, 2012 at 1:26 PM
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Wow!  I can't imagine how you find time for all of it in a day. 

I was able to find a great baby sitter for my son by contacting the "Gifted and Talented" teacher at the local school.  I chose her because she sees basically the same kids from the time they are identified as G&T until they graduate from high school.  She was able to put me in contact with a great young man, who does a wonderful job with my Aspie son. I suggest that you look for someone that way or perhaps if you don't feel comfortable with someone so young, you could look for someone at a nearby university who is majoring in Education or Special Education.

I don't know if it applies here or not, but when I get tired of watching a toddler 'play cook' and eat their pretend food, I always graduate them to the real kitchen.  Start with making a PB&J sandwhich.  You can put peanut butter on fruit and roll it in cereal.  Bake cupcakes and let him frost them.  I don't know how much he will be capable of doing and remembering, but he may surprise you. 

Good luck!

by Kari on Dec. 31, 2012 at 2:55 PM

Me again.

I thought about you at work (I clean houses right now) so I have plenty of time to think :) Seems to me like the answer is help for you. You know how they say to put your oxygen mask on first on the plane before your child's? I think this is like that, for you to be the best mom you can be you HAVE to be able to refuel. You have to call in your support team or if you don't have one then you have to make one. I am always surprised how much help is out there once I finally stop being stubborn and start asking for it. I am a single mom, no child support, aspergers boy, little family help...I finally realized it isn't a sin to ask for a help. I think "Bluerose" has the right idea...if you look around there is someone out there that can spend some quality time with your lovely boy so that you can come back to him fresh and ready to enjoy him again. I am crazy for my son but some days he drives me absolutely crazy...that doesn't make me a bad mom and it doesn't make you a bad mom either, just human. We women expect so much from ourselves...good luck and keep us posted on how it is going!  xo

by on Dec. 31, 2012 at 3:19 PM

I also wanted to add, that you don't have to go anywhere to use a sitter.  I know a family whose son is much more affected than mine.  They hire a young man to stop by for about an hour per day, six days week to give mom time to take a shower and spend a little 'me' time in her room.  They pay him $20 per week.  He's a great kid, the oldest from a not-so-well off family of 4 and is thrilled to have a chance to have a little spending money.  It really is a win-win situation.

by Bronze Member on Dec. 31, 2012 at 4:12 PM

First of all, hugs to you! I am afraid I haven't got much advice for you, but wanted to encourage you to keep up the good work.  You are making a difference, and there are bound to be setbacks every now and again.  It sounds like like you could use some breaks so you can get back to being you again.  Is there anyone at your son's school who could give you the names of teens or college kids who might want a part time job watching or playing with your son a few times a week or on weekends? Or maybe try some yoga or meditation before or after your son goes to bed? Just a few minutes can help you clear your mind and recharge your batteries.  I hope other moms have better advice for you than me, but please, do know that you aren't alone.  And know that you are doing such a good and important job for your son.  You rock!

by on Dec. 31, 2012 at 4:48 PM
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My son is 8 years old and has moderate autism, non-verbal and is still not potty trained. I also have a 5 year old sweet typical daughter....never never loose faith in your child or yourself! Breathe, take a step back or step outside, allow yourself to re-roup then rejoin the battle that is special needs! My husband left me and our two children, took everything I owned and in the darkest of days, climbed can do the same. I know this may sound unusual..but you will not die from any of this! You will be stronger, more alive. I was told at 3 years old my son would need to be in an institution; I said he is in a self-contained autism classroom and we've come a million miles from the doctors at the Atlanta Autism Center saying he'd be in an institute! I'm no one special, just a mom who decided to fight back. You can do the same. Tell yourself, "I won't die from this but I will live."

by Member on Dec. 31, 2012 at 5:22 PM

All I can say mom is that I play his games and watch his shows all the time.  Even til I am so sick of them I could just ugh....It is their world and I am just glad to be a part of it.

by on Dec. 31, 2012 at 5:34 PM

Thank you all sooo very much! I am lucky enough to have family around who is very supportive. I just need to ask them for help more often! I keep my kids on a relatively early schedule, so I do have a 2-3+ hrs at night to myself. It's when those 2-3 hrs are interupted with sleepy children that I go a lil batty. :P
I did end up sitting down with my son while he play-cooked in his room today and we really enjoyed it. It just so happens that my 2 1/2 year old DD (typical development) has the flu the last few days, and it's been like having a newborn again trying to keep my eye, attention and affection on her. But she fell asleep on the floor for about 45 min and that gave me a chance to hang out with my awesome boy.

I will definitely look into a lil more help. I am sure my Fiance (not my son's father) would appreciate that time as well. :-)

by on Dec. 31, 2012 at 6:00 PM

Glad to hear things are looking better in the daylight!

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