Autistic Son's Story and Mother's Hurt

[Persephone]

I need a soft place to fall where I can release some of the worries that plague me.

My 15 1/2 year old son, Tom, has severe autism and he is non-verbal.

In his early years (when we did not have an instruction manual), Tom would fight us when we tried to brush his teeth. I managed to get a finger brush in there with some toddler toothpaste.

When Tom was eight years old, he had extensive dental surgery to repair the damage. Four hours under anesthesia in the hospital. It was quite an ordeal.

After that wake up call, Tom became so cooperative. He let the dentist thoroughly examine him and he let us do extensive toothbrushing regimens morning and night. We limited his sweets.

Two years later, Tom was back in the hospital. With my flashlight, I had spotted something inside his front tooth. But, what we thought was going to be one little filling, turned into another four hour surgery. Tom's molars had come in with the outside looking good. But, when the dentist tapped on the teeth, they cracked open like an egg to reveal decay. She was shocked and so were we. Many of his teeth had soft spots and needed to be filled. After that ordeal, we upped the toothbrushing regimen to include rinsing with ACT and I wrote a letter to the teachers at his school begging them to brush his teeth after lunch.

It's now four years later and Tom had a third dental surgery this June. Four hours under anesthesia and this time, he had a hard time coming out of it. The dentist filled one cavity, filled little starts of decay, and touched up all of his other fillings. Basically every tooth with a chewing surface has a huge, deep amalgam filling. 12 fillings!

Tom loves food and he is constantly eating. Because of his autism, he does not eat a wide variety of foods. For breakfast, he eats ham or Taylor ham or chicken and a graham cracker with peanut butter. For lunch, he eats chicken, orange, grapes, Fruitable (no sugar added) juice. For dinner, he eats chicken (or pork or steak or shrimp), french fries, broccoli, and corn.

He only drinks milk or water and he drinks tons of both. He drinks his milk with a straw.

We allow him to have two Stella Doro cookies for dessert. After which, he must drink a whole bottle of water.

Occasionally, he has ice cream. Chocolate on Valentines Day and Christmas. Whenever he eats a sweet, he drinks a whole bottle of water and we brush his teeth afterwards.

He used to eat a lot of pretzels, but we do not let him eat them anymore since the third surgery.

Tom grinds/ clenches his teeth (but he won't wear a guard), so I've been massaging his jaw before bed.

Now it's August, only two months since his surgery, and I've noticed that his upper molars have bright and dark yellow splotches on them. I've been in turmoil worrying about it. We go to the dentist in a couple of weeks. (We can't go sooner because Tom and I are going back to school.)

I've been obsessed and frought with worry over Tom's teeth to the point where I'm going to have a breakdown. I worry about what's going to happen if he needs another surgery under anesthesia and what if they can't save his teeth.

Tom is such a loving, huggy-kissy-cuddly boy. He does not deserve this.

Every time I see his happy smile, I am heartbroken. For I don't know when his smile will be taken away.

it's all my fault. I should have done a better job in the beginning. I just can't get over it. I'm powerless to change it. I feel like I ruined my son.

And I am constantly talking about his teeth, researching on the internet, and worrying incessantly.

Thank goodness, he is not picking up on it.

But what if, someday, he has to have all his teeth pulled out?

I just can not bear it.

 

[Reno]

First of all you need to stop beating yourself up so much. Having a non verbal autistic son is a day to day struggle and you seem to be doing your best with lots of love in your heart. You can see that when you describe him as "Tom is such a loving, huggy-kissy-cuddly boy. He does not deserve this." All a mom can ever do is her best and you sound like you are trying everything you can. I have a friend that has two autistic boys and one is non verbal. He will only eat bagels and cream cheese. She has tried everything and he just won't eat much of anything else. She gives him supplemental drinks so that he can gets some vitamins into his body. She continually struggles with this. Her son also has multiple issues with his teeth and they always have to sedate him for treatment. He has fell several times and broken teeth as well. I see how all of it takes its toll and breaks her heart at the same time, but all she can do is keep moving forward and taking things a day at a time. You really need to do the same and stop worrying so much. Sometimes in life we have to accept that things will never be perfect, but if we keep trying we can keep moving forward. I think you sound like a wonderful mom and I am sending you a huge hug! Take a breath and try to relax a bit.

I am not sure if your dentist has discussed this with you, but I think the Graham crackers and peanut butter could be a huge part of this problem. Graham crackers are a starch. Peanut butter has a ton of sugar you should look at the label you will be amazed at how much sugar is in it and it is sticky. Sticky plus sugar and starch are great starts for decay. Hope the hug helps and have a great day, Reno

 

[carole]

Hi I have no experience of dealing with someone that is autistic, but you paint a really good picture of your life and how you try to cope. It could be that no matter what you do his teeth would not be in good condition, sometimes people no matter how much they look after their oral care just have weak teeth that are prone to decay etc... There are other people that don't brush or do anything much and they have really good and strong teeth.

I don't think you can do anymore than you are already. You sound like a TOP MUM to me.

 

[Sevena]

Reno makes some good points about certain foods being unexpectedly bad for your teeth, but Carole also makes a good point in that sometimes there really is nothing you can do to stop teeth from becoming damaged/decayed, because sometimes we have bad luck. And it really sucks that it would happen to your son, who absolutely does not deserve it, but I think with such a great, caring, and responsible mother behind him, he will be okay. Your love and dedication is very obvious. And it hurts like hell when someone you love as much as you obviously love your son has to struggle when they don't deserve it. But at least he's got someone as amazing as you to help him in every way you can.

 

[Persephone]

He has such a limited diet (compared to ours) that we're eager to get him to eat different foods (even peanut butter and graham crackers). He doesn't have this every morning. We brush his teeth right after he eats and we've trained him to drink and swish with water. Plus, he always seems to be ravenously hungry. He'll eat breakfast then be scrounging around for lunch an hour later. So, we were trying to find foods that would fill his belly. Right now, he downed a whole slice of pizza in 2 minutes flat!

He's such a huge meat eater (some kind of meat or poultry at every meal) that my hubby made the case that we should give him a cookie or bread to counteract all that meat. i don't understand why he likes some foods and not others (oranges and grapes, but no other fruits).

I had designs on not letting him have any sweets ever again, but I soon realized that it's not doable and his life would be pretty miserable without a little dessert. So, we limit the sweets.

 

[Davee]

Persephone you are such a good mommy and your son sounds so sweet. I hope you get good news at the next dental visit and your mind is put to ease.