bittersweet memories ... | Autism PDD

Dearest Kellie,

I had a freind remind me today to hold to the good positive things that are happening in Ben's life. I was feeling as if we were going backwards this morning. I feel guilt that I did him a diservice with Vacation Bible School. He is learning some good things as he is mentally pushing himself through some tough sensory issues.  I't hard to type through the tears. I have to remember  that he is proud of the craft projects and enjoying the Bible stories. I just so want him to be O.K. in the world and enjoy all of the good things that God has provided. I don't want him to see life as a series of things to be avoided. I want him to find the strength and power to finish well. Jant

My dh was recording our home movies onto DVDs last night and every so often he'd turn on the screen and we'd see snippets of the past few years.  One moment in particular struk me and it's been gnawing at me ever since ... in a bittersweet sort of way.  Luke was 9 mos old (unbelievably cute ... and that's not just motherlove talking here!) and sitting in his high chair.  He was NORMAL.  I could see it in his eyes.  And he was FEEDING HIMSELF with a spoon (something he is averse to doing now), covered in yogurt (now he cannot stand to be in the slightest bit sticky), giggling and looking me in the eyes.  I said to him, "What's Daddy going to say when he sees you like this?!" to which he responded, "Dada ... dada!"

*sigh*  It occurred to me that Luke talks the same now (that is, when he DOES talk) at almost 2&1/2 yrs old as he was talking at 9 mos old ... and that he used a spoon back then, happily and willingly, which he wouldn't do now.  It almost broke my heart to see him being so cute and sweet and normal -- to think that there was a time when I had no worries about his future, about his development, about anything I could've done WRONG to bring this on him.    I'd give almost anything to go back to when he was 9 mos again ... a "do over" just to try to get it right this time.  But I know that's not possible and it'll never happen.  And I know each and everyone of you kind women (and men) on this message board feel the same about your own darling beautiful children.  I wish there was something we could do ... something more.

I just had to get this off my chest.
Kellie
Hang in there Kellie.

Hi Kellie,

          Karrie is right you didn' t do anything wrong. I also have the same feelings too I remember when my ds would sit in his bouncer and play peek a boo with his blankie around 8-9 months also. It does tear you apart that it seems like it all just slips away. I will tell you with my experiences with my ds things are looking better. When he was the age  of your son I was in denial I just kept thinking that he was gonna come around and be normal soon. Well by the time he was four I knew I had to stop sitting in the dark and get him some help (him and myself) Now that he is five almost six things are improving it just takes time!! And alot of hard work. But to look back at when he was 2 and 3 I was feeling the same way you are he wouldn't feed himself with a spoon he was going to the bathroom everywheres but in the bathroom! I thought that it was never going to be any better but it is. This morning Nick and I were outside waiting for his bus the sun was just coming up so it was at eye level and I was helping him get his back pack on while squinting from the sun in my eyes he looked at me and said "Mom what's in your eye?" and I said "the sun" and he said "the sunshine bright?" and I said "yes it is buddy" and he said "hold on I be right back" he then got in my car and got my sunglasses for me!!!! So he recognized by my facial expression that something was hurting my eye and he knew that sun was bright and he connected sunglasses to the sun in my eyes!!!! I never thought I would ever see him interact this way. There are better days coming Kellie!!

Kellie,

You didn't do anything wrong.  I know we probably have all felt this way at some time or another.  It is sad if we have video's to look at or vivid memories of our children as babies where they appear to be NT.  I know it's hard.  Just remember that you are a great mom and don't ever question that.  Just know that we are all here and know what you are going through.  Hope tomorrow looks better. Take care,

Karrie

God bless you, nita!  That makes me feel great.   Perhaps better days are on the horizon.  I've decided that I won't look at those videos again until Luke is able to sit beside me watching them and talking to me about his toddlerhood.  Now THAT is something to look forward to! Nita is so very right on about better days.  The neat thing about them is they are so unexpected.  We get caught up in a routine with our special children to keep them happy and content and before we realize it they do something completely unexpected like getting the sunglasses.  My own daughter is 7.  She is very expressive but very nonverbal.  The other day I asked her if her grandmother had pulled up in the driveway she blurted out clear as a bell, "I'll go see!"  It caught me so off guard I didn't even react.  A few minutes later I realized what she said and I asked her if she said it, she waved me off and went about playing something else.  These bursts of words are coming more frequently now.  She didn't call me daddy until Newyears Day of this year, but now she does it every time she wants something from me.  She has learned, if I ask for it in words I know he will give it to me.

Better days are the fuel for this journey. 

By the way, this is my first post.

John N Texas,

Hi I just wanted to say welcome!!  It's nice to see a Dad here.  We dont' get many fathers.  When they do come though it  is so nice to hear a Fathers perspective on everything.  I have a 3 year old son with autism. I also have 2 older children boy 12 and girl 11.  I am also pregnant and due in 3 weeks with another boy.  Just wanted to introduce myself and say welcome to the board!!  I look forward to learning more about your daughter.  Take care,

Karrie

Hi John and welcome I agree with Karrie about hearing a fathers perspective. I am still trying to educate my ds's dad. Don't get me wrong he loves Nick to death but keeps thinking he is NT and tries to do things with him like take him on rides at the fair!!!! (Major Meltdown) he means well and we all face our kids disabilities in different ways he tends to sit back and let me do the talking and the evaluations so on so forth. Sometimes I feel he is being lazy but I think this is his way of grieving. Or facing it which ever. You could be an insperation to fathers!!!! Welcome and I hope you find this message board as helpful as I have.

                                                       Nita

((((Kellie)))))

I've been down that road too hon, it is going to get easier...but it takes time, you are a terrific mom, and you did everything you were suppose to do...I agree w/ the other posts...I'm glad you're feeling better and hey you're little man sounds like he's just a happy guy and doing really well, and that's what counts, imagine if he didn't have you as his mommy, thank God you both have each other...its what counts hon...the other stuff can be worked on right?! 

so you take care, and keep taking those video's you'll get to see his progress over the years and you'll love it! 

big hugs!

Ali

ps...welcome John N Texas...its really nice to have you here!  Great post about your daughter...that's how we (dh and I)feel...they(our kids) make us so appreciatative and help us realize what blessing the little things are...thanks for that!!! ; )

 

 

:(
I am sorry, Kellie. I keep trying to remember the exact moment when Jaden started going backwards, but I can't. I know she stopped learning at about 12-15 months. She did everything on time physically. She started those stupid stupid shivers (whatever they are ) at about 12 months...She has been scratching herself since about 9 months....I keep having flashbacks to times when I thought 'this is not right' but austism NEVER entered my mind, not for a moment...

(((((((((KELLIE))))))))  I sure don't want to open up any wounds here.  I am glad things are going better for you, hon!  Umm this is the first time I seen that post.  I don't even think I was a member back in July..was I? (lol) 

(((Kellie)))I!!!!!!! This post was from July ... but thank you!  Frankly, when I think back to when I wrote this, Luke was having a very bad week.  He is having a *good* week now, said several words during lunch today, has been trying to soothe his brother when he's crying (by turning on a musical toy for him), and has been my special little helper today (putting away videos for me that I was looking through and 'helping' to put things in an organizer in a desk drawer).

So you all were correct ... things get better over time.
Kellie
Hey Kaviar  Sometimes when I hear things like this I feel bad that I get so down about his own autistic behavior.  My son never regressed but was behind on everything, talking, walking.  I never had the what might have been but only the why isn't he yet.  For 2 yrs I was in denial about his condition, now he has come so far and yet he has miles to go.  I am sorry that it gets you so down somtimes.  I know what it feels like to feel helpless.  I hope tomarrow is a better day for you and your child. 
Copyright Autism-PDD.net