autism · HFA · siblings

High Functioning Autism: Special Siblings

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Mommy, sometimes I wish we had a dragon scale…

We had just come through a pretty explosive meltdown, the biggest one we had all summer, probably the biggest we have had in 6 months at least. There were dirty clothes spread throughout the kitchen and dining room from the laundry hamper that was thrown, there were toys all over the living room, the cushions were off the couch, and everyone was shaken.

Special Siblings, High Functioning Autism

Special Siblings

When we have a meltdown like that, the littles always take cover in my room, it’s a place of comfort and safety for them. When D is over his meltdown, or near the end, he also wants to be in my room. It is also a place of comfort and safety for him. It is a place where he knows he is safe no matter what the rest of the house has just experienced. So, when he moves in, they move out. They usually head towards the front of the house and assess the damage while D finally starts to calm down and self soothe.

As Pouty’s wish trailed off, I knew the rest of her unspoken wish, she never had to say it. When things are tough, when D is in full blown explosive meltdown mode, I know the littles wish they could escape to Dragon Land with Max and Emmy…I wish they could too. Oh how happy the days would be to escape when D was in meltdown mode, never to be subjected to the reality of an autism meltdown.

Honestly, there are times that I wish for my own dragon scale. One that would transport us to a make believe world filled with adventures and dragon friends like on the children’s cartoon, Dragon Tales

As the sibling of a child on the autism spectrum, life is difficult. There are so many aspects of life that other children may never experience or understand. Meltdowns are just one tiny part of the life of these special siblings.

While it is not intentional, these special siblings often miss out on a lot of the so called normal childhood experience. Their plans are often interrupted by the immediate needs of their brother or sister who is experiencing sensory overload, or unable to handle a routine change. These children are often subject to very controlled play, controlled moves, controlled life.

The sibling with HFA may generalize his or her anxiety onto the siblings. In our situation, this is because D is worried that if one of the littles does something he is already anxious about, he will not be able to hold himself together. So, rather than letting them experience life and natural consequences, he controls their moves. While it looks like he is being mean, I truly believe it is a self-preservation coping skill. Unfortunately, the little ones are still subject to it.

An example that seems to stand out the most is when we need to use the elevator. D is terrified of the alarm ringing on the elevator. He is afraid of the noise, of getting in trouble for ringing the alarm, and of what might happen if someone comes and there is nothing wrong. Therefore, any time we are headed for the elevator he runs to push the button on the outside, putting his hands out to keep the littles from getting within arms’ reach. Once on the elevator, he hovers within inches of the button panel. He will not let anyone near the buttons because they might accidentally push the wrong one…this actually includes Chad and me! The anxiety is so much that if there is an out, for instance we are only climbing 2 flights of stairs instead of 5, he will take the stairs. When we come back together, he asks for full details with regards to who pushed the buttons, did the alarm go off, what happened, and so on.

So many times I look at my littles and am sad because I feel like they are getting the raw end of the deal. I feel like it is unfair that they should have to endure the difficulties of being the siblings of an older brother with HFA. It seems so unfair that the excitement of pushing the elevator button is stolen from them, or that they have to endure the emotional trauma of his meltdowns. I feel guilty because I feel like I created this difficulty in life and they should have been spared from it.

Then I remember that before God hung the moon or put water in the oceans, he knew the beginning and the end. He knew before D was formed in his birthmother’s womb that he would be our son, and that he would have these three siblings. He knew before the littles were conceived that their life would be filled with the experience as a sibling of an older brother with HFA. God knew all of this, yet he still formed each of these beautiful children and made us a family.

Some things to help these special siblings:

  1. One on one time – this is important for all children, but the special siblings really need the extra time away, both as respite and to be reassured of yours and God’s love for them.
  2. Outside activities – These special siblings spend so much time taking a back seat to the needs of their brother or sister with HFA, they need something of their own. My girls play soccer and really enjoy their time in church classes and other activities during the school year. 
  3. Listen – when these special siblings talk, listen. Listen to their every word, never diminish their feelings or what they have to say. One day we were grocery shopping while D was at his friend’s house. Chad said, Goodness, is he just going to spend the night? I don’t think he needs to. Spike said, Really?! A whole day and night without D? AWE-SOME!! While what she said was inappropriate, it was very important for me to stop right then and talk to her about how she felt. Being the sister of D takes a lot out of a girl and sometimes she needs that break. She was only expressing her feelings and needed to know that it is ok to feel that way sometimes. It doesn’t mean that she loves him any less, nor does it mean that she wants to be away from him all the time. Frankly, I think it is probably somewhat appropriate, even for a sibling of a neuro-typical child.
  4. Family time – I think it is very important to do things together as a family. While they live with the rough stuff, they need to experience fun times with their sibling with HFA. There should be fun memories of park days, vacations, fun adventures, even just playing games in the living room floor. We know that D can only handle 2-3 days away from home. So, we try to take quick mini-vacations when time and money permit. We will even get a hotel room in town during the winter. It gives us the feeling of a small vacation and the indoor pool gives the kids a chance to get rid of the winter’s cabin fever. We also do a camp out in the living room a few times a year. The kids love eating popcorn on thei pallets and sleeping in the crumbs. HAHA
  5. Share God’s love – Remind these children that God loves them. Tell them about God knowing about every hair on their head, every moment of their life, and that God has a perfect plan for their life. Assure them that the perfect plan God has for them will always turn out well and will always bring glory to Him.
  6. Prayer – Always, always pray for your special sibling child. These children need to be covered in prayer in a special way. As parents, we need to pray for God to keep them wrapped in his loving arms, to keep their hearts happy, and give them a special sense of peace that will allow them to always show God’s love despite the hard times in life. We need to pray that God works in a mighty way for them and that they keep their eyes on Him and his perfect plan.

These siblings are amazing, exceptional people. They face trials and struggles on a daily basis that many children will never understand. During these trials and struggles, though, they also learn to love in a powerful way. Their lives can be a beautiful testimony of God’s love.

How do you ensure your child who is a special sibling is getting the love and attention he or she needs when they wish for their own dragon scale?

What can you add to help these trials become triumphs?

8 thoughts on “High Functioning Autism: Special Siblings

  1. I think when siblings and even parents have children with special needs, that it gives them more understanding and compassion for those who are going through the same things or who are having difficulties in other areas of their life. The majority of people don’t understand , unless they go through a similar situation.

    1. Joy, I agree! I truly believe that while life is hard on them while they are little, they will be more understanding and compassionate. God has given me three little ones with big hearts and a lot of understanding. Yeah, we all have our bad days, but overall they are learning about TRUE, Godly love!

  2. You’re speaking my language this week Lena! Our son with HFA doesn’t have meltdowns; he has controlled rule sets (in his head) that everyone has to follow though. I recently took my other son out for ice cream (my older son didn’t want to go) and we just talked. He gets frustrated with D1’s rules and the fact that he gets to CHANGE the rules and is offended when people don’t play along. It also applies to me; We were invited to swim at a friend’s pool a couple weeks ago but when we arrived, there were also neighbor kids visiting. D1 came at me very forcefully “THIS ISN’T WHAT YOU SAID IT WOULD BE LIKE MOM! Why didn’t you TELL ME!?” Well, because I didn’t know, and the neighbor kids had just shown up a few minutes before we arrived. He ended up watching a movie in the house with one of our friend’s kids because he couldn’t deal with the unexpected extra kids in the pool. I am making a pointed effort to touch bases with my younger son regularly to see how things are going. It’s hard being his brother’s brother.

    1. Dawn, I am not so sure D would have been able to handle that change without just leaving. Maybe, depending on the kid. I have to admit, sometimes *I* get frustrated and upset when D changes the rules in the middle of the proverbial game. I know it is hard on the little ones. I’m so glad you and your younger son had the chance to have ice cream and some special time. It is so important!

  3. This is just what I needed – While we don’t have a child with HFA, we do have one that is now the oldest at home, adopted later on in life and living with severe medical issues, with more coming out as the days go on. With today’s news of another VERY difficult diagnosis coupled with my own crazy (as in not sure what’s up yet) health situation, I struggled with the future of how to care for this very needy child AND how to care for the littles and their needs BUT was graciously, and perfectly reminded that while I feel they may loose out on some “kid” stuff, we are a family and this is how we roll AND most importantly, that the Lord knew all of that and has allowed us to parent them all, through it all. Thank you for writing. Thank you for being the Spirit’s words to my burdened heart, thank you! Through the tears, I say thank you!

    1. Oh, sweet Struggling Mama, your comment made me cry. Your family will be in my prayers as you go through these health issues. And yes, God has had all of this written and planned long before you or I can even imagine.

      I wonder…while our little ones are losing out on some kid stuff, what other good stuff, true Godly things, are they learning? I pray that mine are learning so much and that my days of teaching the good stuff far outweighs my own meltdown days.

      Sending lots of love and many prayers your way, Mama.

  4. Thank you so much for this! It never occurred to me how my son’s issues (likely HFA, but still waiting for official dx) were impacting his older sister. We often don’t do things we plan on doing because he will meltdown about going (he doesn’t like to leave the house, ever)…so my daughter misses out. Yesterday, we actually got him out of the house, which was great, but after 40 minutes, he was done…and while he didn’t meltdown, he just went laid down by himself – his sister was left without a playmate (mom and dad are not good substitutions apparently) :(. It’s SO hard, people really don’t understand – they think he’s just spoiled and socially awkward because he doesn’t “look” like what they expect from autism.

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