Here is an interview with Tenille Avery, our 2013 Mother of Special Needs Children:
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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?
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?
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?
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?
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?
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?
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?
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.
Thank you Tenille, for your honesty and bravery. You are doing a great work within the walls of your home.
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.
