What about the Siblings of an Autism Spectrum Disorder Child?

Autism Awareness Art By Bianca B.

What about the siblings of a child or children with autism? Or the siblings of any special needs child for that matter… Do they ever feel slighted, unimportant, overlooked? Do the needs of the “special” child ever eclipse theirs? How do you balance it all? Do you ever balance it all? If any of you have found a magic formula, please be kind and share! ☺

The journal entry I am sharing here is very “raw” for lack of a better term. Just know that 2008 was a rough year for our family. In fact, writing had become my therapy, a way to remember that Ben had been entrusted to my care and that indeed, I could do the job of raising him. I wanted to remember him as a sweet baby, as a mischieveous toddler… I wanted to feel better. Yet I felt that I was failing left and right. 

But guess what? We made it out. Was it perfect? No. Did we make mistakes? So many. But hopefully, hopefully, Camie and Lixie both will continue to be alright! We all have learned that the atonement of our Lord and Savior not only allows us to repent of our sins, but also makes up for our sorrows, sufferings, troubles and trials. 

I will share how Camie and Lixie continued on their autism sibs journey later, but for today, read the first part of their early teenage adventure in autism land! (Just know that it continues on and isn’t awful ☺)

"Just Because" Art by Benjamin

Camille and Angelique, Siblings of an Autism Spectrum Disorder teen

September 2007 to January 2008

Today Camille is fourteen, Benjamin is twelve and a half and Angelique is ten and a half. A household where an almost teenage boy with autism lives is a very explosive place, add to the mix a bona fide teenage girl and a tween tiny bopper -- who thinks she is already a teen in a lot of ways-- and you have, well, a very dynamic place to put it mildly...

I sometimes call what we are going through right now “round two”. I have to explain. In my mind, “round one” was just after we received Ben’s diagnosis, when our world was turned upside down and round and round, in a whirlwind of therapies, doctor’s appointments and medical tests, special education classes for Ben and special education readings for momma! This is “round two” because as Ben is entering adolescence and is changing, so are his demeanor and behavior.

Alas all the behavior modification in the world that one can put their child with autism through will not outlast the turmoil of the teenage years... The child will have to relearn almost everything yet again.

What is comforting is that I have not forgotten the hard-acquired knowledge! That has stayed with me, I can still use some of the techniques that our therapists taught me back when Ben was four years old. Some still work, some don’t, or not so well... Ben did not completely regress either, he is still verbal; but the areas in which he did regress are difficult to deal with at home.

Ben has become violent again the past little while. That has impacted life at home so much. Camille and Angelique have a hard time with it. Indeed who can blame them for not wanting to be around an individual who is going to hit them, pull their hair, jump on them, scream in their faces without any warning whatsoever? And of course he is much bigger and stronger now than when he was two!

I feel like I am the eternal referee. Trying to protect the girls at the same time as trying to help them understand and be tolerant as much as they can be... Not an easy job... I also get caught in the cross fire and Ben gets mad at me.

Thankfully Ben is an angel at school! He behaves very well for the teachers so I can send him to school knowing that he’ll be at peace there. He really thrives on the routine and predictability, the schedules and calendars that they have for everything they do.

Home is more unscheduled and ‘carefree’ so perhaps Ben feels less anchored and maybe lashes out because of that lack of structure. I sometimes feel that I am failing at providing the highly organized environment that would be best for him to function in. But home simply cannot be that regulated or the rest of us would all go insane; we have to have some freedom of choice and some things have to stay spontaneous to be fun or simply to happen. Because of the familiarity of all the players as well  – he is comfortable with us, he is accepted– Ben can really let his inhibitions loose and his frustrations are set free upon us.

The violence increased as the months after he started sixth grade marched on, all of us feeling so overwhelmed as he continued to become wilder and wilder. One night he took a baseball bat to Keith and proceeded to beat him with it. It took both Keith and I to wrench it away from him. An awful temper tantrum ensued, not unlike when he was a toddler and he couldn’t have something his mind was set upon; indeed “round two” it is...

Another night a couple of plastic hangers became his weapon of choice... He broke both of them in the process of beating Keith with them. This obsession with hitting Keith is frightening, sort of an Alpha male fight for dominance of the pack, clearly testosterone fueled on Ben’s part, always followed by a meltdown that can last a few of hours once set off.

When these ‘episodes’ are in full swing both Angelique and Camille retreat to their bedrooms, sometimes together, sometimes separately, to read or listen to their music, trying to block out as much of the racket as they possibly can. I am painfully aware of how difficult it is for them as they have to hear their brother cry and carry on for hours sometimes... It is emotionally very upsetting.

I wish we had a “safe place” for them to go to, grandma’s or somewhere else... But we’ve had to “go it alone” in these horrid moments, so it isn’t going to change now I am afraid. “What doesn’t kill you makes you stronger”, they say. Or “it is a great life if you don’t weaken”! Or “endure to the end”... My personal favorite, of course: “the only way out is the way through”. Take your pick, they are all good things to tell yourself when the going gets tough ☺

But nothing can replace the peace we can feel when we lay our burdens at the Lord’s feet. He has promised us; “Come unto me, all ye that labor and are heavy laden, and I will give you rest” (Matthew 11:28) I have tested that promise as I have come to the Savior and asked him to give us rest from the trials that we faced. It wasn’t instantaneous but the rest promised eventually came, just as He had said.

Of course we have sought medical attention for Ben, several adjustments to his medications were necessary –such as Tegretol– and after months of trial and error and even a psychotic episode in a grocery store parking lot –boy, that was fun!-- I think we are finally on the right track. Dr. Allen Kuperman is his new behavioral pediatrician here. We really like him as he listens well and provides invaluable feedback to whatever trial we face with Ben.

Dr. Kuperman prescribed Risperdal for Ben, which is used to treat mental and mood disorders and was clearly necessary for our son’s aggression and agitation. It is an anti-psychotic drug known to help autistic people think more clearly and be less irritable and works by restoring the balance of certain natural substances in the brain  through the neurotransmitters.

Ben has been on this drug for one month now and I can report a clear decrease in the aggression he has shown against any members of the family. I am so thrilled with the results we have obtained with this drug. The previous one Dr. Kuperman placed him on, Depakote, caused the psychotic episode, a scary event I hope never to repeat! You never know how different drugs can affect different people; a friend I met through email has a child with autism who takes Depakote and it has worked very well for him.

I pray each and every day that Risperdal will continue to work for Ben. Little by little I have felt my sweet Ben return to us. He seems more peaceful now, more content once again. He is still a very intense soul, always looking for something to do or make, something to carry along –a stuffed animal, a toy of some kind or other–, always asking us to play games with him or if he can go out in the snow... But he is humming his favorite songs again and he isn’t so quick to hit and throw a big hairy fit and dissolve into incomprehensible tears. Last but not least in my book, our nightly ritual of brushing teeth isn’t so awful anymore. Not that it is all fun and games though…

It seems to me that life is livable again... I am so grateful that our prayers were answered and that peace came once again to some measure. It isn’t perfect because with autism, there shall never be perfect peace on this earth for Ben.

But I know that Heavenly Father loves Ben even more than I love him and sometimes that takes my breath away. President Gordon B. Hinckley has said about that: “Never forget that these little ones are the sons and daughters of God and that yours is a custodial relationship to them, that He was a parent before you were parents and that He has not relinquished His parental rights or interest in these His little ones.”

So Keith and I strive to teach both Ben and the girls the best we know how, to live together, to learn from each other, to love each other, because we were put together by design, we have to believe that. Having an autistic teen will mean that everything we go through is magnified, made more challenging by this specific disability. The teenage years are not a walk in the park anyway – and we will have three teenagers at once–  but we need to press on. “The only way out is the way through!”

Isaiah 54:13 reads: “And all thy children shall be taught of the Lord; and great shall be the peace of thy children.” It is very difficult with Ben’s developmental disabilities to continue on with reading the Book of Mormon each and every night, to cling to the promise of its peace but we have faith that it will help our family. We cannot rely on medicine alone, we have to add faith too!

Camille and Angelique will always be different from the other girls their age, mature beyond their years and hopefully more attuned to the different abilities found in individuals all around us. We see Ben not so much as disabled but as differently able to react to the world around us, sensitive to different things than we are, aware of another sphere of consciousness all around him, attuned to other nuances in the melodies of life. Ben knows so well if we are upset by noticing even minute details in our demeanor, he can pick up our innermost feelings so it seems.

So Angelique and Camille have had to live their young lives, and now their teenage years, with a human emotional barometer, a high task for developing teens. They have had to develop compassion and unfailing understanding at a very young age, when most of their counterparts are mostly still only rough balls of ‘id’ with egos begging to be understood and fulfilled. They have to put themselves aside most of the time and trust that: “... the mountains shall depart and the hills be removed, but my kindness shall not depart from them.” (3 Nephi 22:10) Such is the lot of the siblings of developmentally delayed or any handicapped children.

Eventually I trust that it will bring them such great blessings that they will eclipse the hardships of the beginning. Last General Conference, October 2007, Elder Joseph B. Wirthlin expounded on “the Great Commandment”, namely the pure love of Christ or charity. He said: “Love is the beginning, the middle, and the end of the pathway of discipleship. It comforts, counsels, cures, and consoles. It leads us through the valley of darkness and through the veil of death. In the end love leads us to the glory and grandeur of eternal life.” My girls have that love for their brother, I feel they do, I know they do.

Elder Wirthlin continues to say: “We see ourselves in terms of yesterday and today. Our Heavenly Father sees us in terms of forever. Although we might settle for less. Heavenly Father won’t, for He sees us as the glorious beings we are capable of becoming.

The gospel of Jesus Christ is a gospel of transformation. It takes us as men and women of the earth and refines us into men and women for the eternities.

The means of this refinement is our Christlike love. There is no pain it cannot soften, no bitterness it cannot remove, no hatred it cannot alter.”  As a forever family, sealed for the eternities if we live worthy of that blessing, Keith, Camille, Angelique and I can qualify ourselves to go back and live together with Ben, Jesus Christ and Heavenly Father through the exercise of perfect love.