Arizona Mother of Special Needs

I'm sharing a post I put on the Arizona American Mothers Blog recently.  It is an interview I did with our new Arizona Mother of Special Needs, Tenille Avery.  

Sometimes we, as mothers and wives, get so bogged down with our own problems and family situations, that we start thinking negatively and don't appreciate the blessings we have.  I find it always helps me when I see others and their problems, to be more content and happy with my own problems.  We're more comfortable with our own lives.

Here is Tenille and her family and story.
 

 1.  What are your children diagnosed with?  What are their ages?

Bryon was diagnosed at age 4 with "severe autism". Timothy was also diagnosed at age 4 with "moderately severe autism".
2.  What are the limitations or challenges your children have?

We have some severe speech delays. Bryon has the speech of a 4 or 5 year old. He uses a lot of memorized phrases that are sometimes out of context. Neither spoke before they were 4. Additionally, Bryon is not yet fully potty trained and he has a hyper gag reflex and a texture aversion. He cannot/doesn't chew. He lives on a diet of instant oatmeal, macaroni and cheese mixed with baby food, yogurt, pudding, and applesauce. He has difficulty gaining weight and is nutrient deficient. We supplement with pediasure. Timothy's speech is great and he is now a stickler for enunciation, though sometimes he decides how a word is pronounced and will not change his mind. He is incredibly stubborn. We struggle with just about everything because if he doesn't want to do, it is not getting done. He tends to be more angry and aggressive; almost the exact opposite of Bryon in every way.
3.  How does this effect your home/personal life?

It effects everything. We were a non verbal household for years. We used a lot of picture cues and did a lot of guessing. Ultimately, my daughter had a speech delay and was in special education until this year. Bryon's diet and Timothy's stubbornness means I cook up to 5 different dinners every night. I still change the diapers of a 9 year old. We have extra locks on our door and an alarm that chimes when we open a door because Timothy is a runner and if Bryon got out alone, he would not be able to tell anyone his name or where he lived or my name or phone number. My children run a very high risk of exploitation. Bryon gets sick more often and worse than most children because of his poor diet. There are still some very frustrating moments because communicating with my boys is still very difficult. I don't have a personal life. :) I can't.
4.  As a mother, how do you view or see your children?

For all our difficulty, I see my children as perfect. They are little pieces of heaven that sometimes kick me in the face when they don't want to put on their shoes.
5.  How do you view your job as a mother to children with special needs?

My job as a mother is never ending. It was tough to realize that Bryon will never leave my home. That I will have to make arrangements for him after I die because he won't be able to live independently. I have very high hopes for Timothy. He is somewhat of a genius. It is truly a full time job. Between school, meetings, and therapies, it seems like I have something everyday for my kids.
6.  How do you keep sane or what keeps you going when life gets hard?

Sanity is overrated. I read or go to the gym. Sometimes I just turn on my iPod and crank up the volume. Xanax. Lots and lots of Xanax.
7.  What are some funny things that have happened with your children?

So many things. My kids are hilarious. I know they don't usually mean to be, but they are. Some of the things they say crack me up. We have started keeping a journal of all the crazy things they say. Timothy loves to tell people to "Stop stepping on my moment" when he feels they are upstaging him. I asked him one day what he wanted for dinner, he responded with "Nothing, I am afraid of getting fat."
8. What is the hardest thing to cope with?

The hardest thing to cope with would be my own feelings of inadequacy and failure. I am not equipped for special needs kids. It is very stressful and I always feel like I am doing something wrong. Then I feel guilty for being stressed and I am sure that almost anyone else could to this better than me.

 My life is hard. I laugh a lot because if I don't, I cry. I don't want to be pitied, but I have a difficult time being praised because I feel so undeserving of people's admiration. People often tell me that they could never do what I do. They could, especially when they have to. It's your child. I get frustrated when people say that they are just glad that their kids are "healthy". Believe me, when they are not "healthy" or "typical", you love them even more. You feel an insanely fierce need to protect them. Bryon is my oldest, so this is all I know. I am on a serious learning curve with my "typical" daughter. I can parent autistic kids. Typical is new for me.

 Thank you Tenille, for your honesty and bravery.  You are doing a great work within the walls of your home.

Thanks for reading,

Cathy

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