why won't they just dx him.??

iVillage Member
Registered: 03-30-2003
why won't they just dx him.??
8
Mon, 11-21-2005 - 2:08pm

Jacob had an OT eval today and didn't qualify for services. The OT did say she saw some things that really concerned her for example, she put Jacob in a high chair and he started trying to figure out how the table top came off. SHe tried to redirect him and he just kept "perservearing" (sp?) on it. She also said he was a little floppy with his muscle tone. But anyhow, the OT gave us some things to do at home and then said, if things stay the same or get worse come back.

I know my child is autistic. I have known since he was 8 weeks old. I know it more and more each day. Why won't they just label him and get it over with. I know the protocol and they will wait until he is 18 months old. But by then, I am not sure if I will feel much more love for him. THis is the hardest thing I have ever had to deal with. My heart is not in it all the time. I hate that I have to work so much harder to get him to do things. I hate that I feel like I am being punished. ANd truthfully I just can't see any good out of this situation. I am tired of feeling so hopeless. IT is affecting me and my interactions with him. My NT DD is so amazing to me and I just don' think Jacob will ever be amazing to me. Pathetic huh??
Anyhow, I am tired of all the professionals poo-pooing what is true. I am tired of hearing that he is a slow to warm child, that he might have sensory issues. I just wish they would face the facts so I can get on with it!!
Sorry such a downer, but I feel sad today.
SOnya

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Registered: 03-26-2003
Mon, 11-21-2005 - 3:16pm

I know waiting for a diagnosis is difficult. But there are many things you can do in the mean time to help him with his development.

However, reading that you feel your son may never "amaze" you makes me so sad. Even if your child is on the spectrum, don't think for one minute that he won't amaze you, that he isn't capable of awesome things. I know it may be hard to realize right now. But when your son does make those developmental milestone, it will be so exciting. Because you will know how hard he worked towards reaching those things that your daughter did easily and you probably took for granted.

Valerie

~Valerie
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Registered: 08-30-2005
Mon, 11-21-2005 - 3:57pm

I'm so sorry you are having a bad day...I'm there frequently myself, but my prozac seems to be kicking in today (grin:) so I'm having positive throughts I can share with you. We don't have a NT child, just one with ASD. For a while my heart just broke when we were around other NT kids my son's age...seeing what they were doing and how they were communicating seemed to shine a spotlight on what my child wasn't doing. But...you know when we have good days, or even just good moments when he does something new for the first time, or just when we have a fun moment together and he smiles at me....my heart leaps for joy. Those moments are priceless and I live for them. Moms of NT probably kids take these moments for granted because they happen all the time. While I'd give anything for my son to be "typical," he is special in his own way...and though I've never met him, I am sure your son is too. Things will get better. I have dark moments too, but I KNOW it will get better. I can't say I know how you feel, because we all have very different situations, but there is joy to be had with your son. Good days will come with the bad. Hang in there.

Robin

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Registered: 02-24-2004
Mon, 11-21-2005 - 7:30pm

Sonya,

I too, find it difficult some days, working so hard trying to teach my son things. I also have an NT child, who learned things much quicker and differently. I have to teach Nathan things differently than I taught his brother. And it's not just the everyday things, it's schoolwork too. Teaching him to focus has been difficult. He'll be reading.....say a word...then repeat that word 4 more times!!! I have to redirect his attention back to the book. It's exhausting! The darn word just sounds so good, he has to repeat it!! LOL Or he just stops reading, because he gets "lost" in the pictures.

I have seen lots of improvement though. He's 6 now, and doing things I wasn't really sure he would be doing. I mean, he's reading, holding a pencil, writing words. I just keep reminding myself to keep going.....it's worth it.

michelle

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Registered: 03-26-2003
Mon, 11-21-2005 - 10:57pm

You sound like you are really struggling with lots of this stuff. I think it may be a wise thing to consider seeking some professional support for yourself. I myself see a therapist weekly to help me deal with my very ASD family. Just to give me ideas and support. It may be a very good idea for you.

I hope I am misunderstanding your post but are you saying that you won't love your son at 18 months or you don't love him now and won't get it back? That is the part that really concerned me and where I think you need to seek help. Never have I questioned my love for my kids, sometimes they make me mad. Sometimes I don't like them very much (lol) but I have always loved them deeply. And they always, always have amazed me. Regardless of ability or disability, every person is special and meaningful even the profoundly delayed. Every person does amazing things. It is a matter of us re-arranging what we deem amazing. It is WAY more amazing for a child with significant CP to walk with a walker than it is for an NT child to take steps at 1. Ask any parent of a child with CP because that child had to work 100 times harder to do that and when you see it, it brings tears to your eyes because it is amazing.

I really hope you begin to feel better soon. Simply a diagnosis won't make some of those feelings you are dealing with go away. I think you really need to take care of yourself too.

Renee

Photobucket
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Registered: 08-26-2005
Tue, 11-22-2005 - 12:36am
Sonya,
I think your just overwhelmed and frustrated that nobody can see the things you can. I have no doubt you love your son very much and your love for your son will continue to grow regardless of whether he gets a diagnosis or not. Your probably just scared about your sons future. When I first started to have concerns about Jake he was about 11 months old. He didn't babble, wasn't even crawling, he had poor eye contact and was obsessed with anything that would spin. I had convinced myself he would never walk, never talk and be totally unable to live a "normal life". What a difference a couple of months can make! Now a year later he runs everywhere, he talks non stop and is just a joy to be around most of the time(LOL).It's very scary in the begining, especially before you even have a diagnosis because you don't know what your dealing with.You second guess yourself all the time.I remember I was obsessed with every little thing Jake would do. Even if you feel you know for sure yourself it can take a couple of different doctors and many months before you actually get a diagnosis.I think you said your son was about a year old and I know you don't want to hear this but you might have to wait at least 6 more months before a doctor could tell for sure.Did the O.T tell you your son had low tone? Is he behind in any of his motor skills?What are the things about your son that make you think he may be on the spectrum?I would call E.I again if you feel that the O.T is wrong or if you are still concerned. Even though your son didn't qualify for services there are things you can do yourself. My advice to you would be to buy "The Out Of Sync Child"(can't think of the author) and "The Child with Special Needs" by Stanley Greenspan. Try not to beat yourself up so much about it. I wish I could tell you your not going to have more days like today, it is hard sometimes but when your son starts to do things he's never done before, days like today will make it all worthwhile.
Teresa
iVillage Member
Registered: 09-15-2003
Tue, 11-22-2005 - 3:17am

Sonya,

I believe that becoming a parent to a special needs child is a journey. Everyone progresses at different rates. Although you may feel disheartened and angry currently, don't assume it will continue indefinitely. I feel I have been through different phases in my journey. I definitely experienced a "why my precious child, why so hard, why us stage". I have moved beyone that now and you will too. Perhaps as other said, a therapist would support you and make your journey easier. It is important to have support and parents of NT children don't understand the issues you are facing.

Think about what it is you feel you will gain from a diagnosis. Increased services? To stop wondering? To convince family members? I have read many stories on this board about children receiving one diagnosis early on, and then another a few years down the road. SO, it isn't always as definitive as you would like.

I know it is hard when you feel overwhelmed by your child's issues, but stop and think about yourself this week. Try to figure out some small things that might give you some relief. How about a few hours by yourself? Many wishes for better days headed your way.
Chrissy

iVillage Member
Registered: 03-26-2003
Tue, 11-22-2005 - 7:47am

Your post has been stirring me with anger all day since I replied to you. As I must refrain from posting how I really feel, I will say this...Your son is a child, not a situation. He needs love, read this recent article and reevaluate how lucky you are to have a child, regardless of him not measuring up to your standards...

'She Only Knew How to Love'

By Sherry Wright
http://www.beliefnet.com/story/179/story_17911.html

I have been blessed with four children-one of them severely handicapped. Her name was Tiffany, and she was severely autistic. Although she couldn't speak, Tiffany only knew how to love people.
Every day my father would come over just to take her for a walk by the creek. She loved to throw rocks into it and watch the ripples. She would giggle so hard--it was almost like she had her own connection to God.
One weekend when Tiffany was 12 years old, we went to watch my oldest daughter Becky's baseball tournament. That was the most beautiful time we ever had with Tiffany. She never once hit herself--an upsetting symptom of her form of autism--and she just showered love on each and every one of us.
At the end of the tournament, the officials handed out awards on the field. Becky won the MVP trophy. Suddenly Tiffany walked out to the pitcher's mound.
Everyone watched because this was very out of character for her. She lifted her hands above her head and started twirling around in circles, laughing so hard that it became contagious. We were all full of joy.
The really strange part was that tears were rolling down her face. It was such a beautiful moment, and it touched so many people. It was the first time that we had ever seen her shed a tear out of joy and not out of hurting herself.
After we all came home and I had put the kids to bed, I thanked God for giving me such a beautiful time with her and the other children. Then I fell asleep. I actually slept the whole night for one of the first times in the 12 years of Tiffany's life.
I had no idea what was to come.
The next morning I went into Tiffany's bedroom to get her ready for school. I found she had died in her sleep. I was devastated and didn't understand why God would allow this to happen to me again (I also lost a son in a drowning accident a few years before).
All of a sudden I was struck with a revelation. When Tiffany went to that baseball field and put her hands to the sky and spun around laughing, she was telling God that she was ready to come home. He allowed me to have that last, most beautiful memory of her, filled with love and joy, where she was not suffering and hitting herself.
Tears streamed down my face as I reflected on my last day with her. I thank God every day that he allowed me those memories. I know in my heart that her death was only the beginning of her life. She was so beautiful at her funeral. I know that God was letting me see that she was whole now. All the pain and suffering had left her face.
I felt so much peace because God gave me that gift of witnessing my little girl say goodbye the night before.
So please cherish your children always, because no one is promised tomorrow. Make every day count, and hold on to those precious moments. Not one day goes by that I don't miss and think of Tiffany, but I thank God for her life.

~Valerie
iVillage Member
Registered: 03-30-2003
Tue, 11-22-2005 - 9:26am
vjacobs, your post was very touching, however, I never intended to make anyone angry. I was just posting how I felt and I was not looking to be judged. This board provides so much support to so many amazing moms and I was having a moment when I needed support to.