When You Can No Longer Reason With Anxiety

Anxiety can actually paralyze my son. He can get himself so worked up and sick over situations that he cannot function. His anxiety is usually brought upon from new situation and things. Most of the time I can reason with him and help him work through his anxiety. We will do these things to help ease his fears:

·        Read social stories

·        Watch a video about the thing/ place/event

·        Look at pictures of the thing/ place/ event

·        Make a craft about the place/event

·        Talk positively about the thing/ place/event

·        Do a walkthrough/ trial run before the place has many people or before the event

·        Allow him to have a warm-up time where he just can sit back and observe until he feels comfortable

All of these things help get him more familiar with the new thing, place, or event. It usually helps ease the anxiety of the unknown. However, there are sometimes that I cannot reason with his anxiety. Nothing I can say or do will help his fear at this point. Actually, continuing to talk about it makes the fear worse.

I was talking to his therapist about this last week. Her advice was when he reaches this point, I just need to stop. She said to no longer talk about it or do anything else to prepare him. I just need to step aside, and let it happen, so he can try to work through it.

As a parent, this is super hard. I hate seeing my child extremely upset. But, he is going to need to learn how to face his fears. Currently, he is very scared about going to Kindergarten Registration at “the big school”. I have stopped talking to him about it because all talking does is bring him to tears. All I can do now is pray that God takes away his anxiety over this situation and replaces it with HIS peace.

Kindergarten Registration

I can’t believe that my son is about to start Kindergarten!!!  When we first started this journey, all I kept telling myself with every doctor appointment, evaluation, and therapy session was that I want him to be ready for Kindergarten. Now, that day is around the corner.

Last night, I printed off the forms for registration. Not only do parents have to fill out five forms, but each child is given a Kindergarten Readiness Test. I looked over some information that would be tested. I was so excited to see that some skills that he just mastered in the past two months (skipping, hopping, and galloping) were on the motor test. I actually got teary eyed today thanking our Physical Therapist for helping him master these skills recently. I really believe he is ready and will have a successful year thanks to the entire group of incredible therapist who have helped us get to where we are today.

Since my son has anxiety with new places and crowds, I called the school today about doing a pre-walk through before registration day. To my surprise, the school told me that they set aside special times for some of the students that need a calmer environment. They then asked if I would like to make an appointment for one of those times. I said, “Yes! This is such a blessing!”

I am so excited that our school does this. I do not have to worry about my son getting worked up and over-stimulated due to the crowd before testing. Hopefully, this accommodation will allow him to do his best and show them what he knows.

I wanted to share this story in case it helps anyone else whose child could benefit from a scheduled registration time. It is worth calling the school or district to see if it is offered to your child too.

The Wrong Order

Today my son made it into the one hundred club! He can now count to one hundred. To celebrate, I told him we could get some ice cream.  When we got there, my son was so excited to order by himself. He asked for a kid’s cup of peppermint ice cream. However, the lady brought him a chocolate chip ice cream cone instead. Even though, I understood what he said, I guess she did not. He was very upset and started crying. I quickly asked for a cup and told my son I would fix it. The line was long, so I walked him over to the side to calm down, and the cashier started helping the next person in line.

I then put his ice cream in a cup (He says a crunchy cone does not go with soft ice cream).  Once his ice cream was in a cup, he calmed down, and I encouraged him to try it. I told him that he might like it as much as peppermint. I also told him that if he didn’t like it, I would take it back and get him what he wanted. He thought about it for a second, and then…

HE TOOK A BITE!

I couldn’t believe it! He handled change and disappointment like a champ. He also said that he loved the chocolate chip ice cream.

Words cannot explain how proud and happy this moment made me. My son not only responded appropriately to change and disappointment (without a huge meltdown), but he tried something new! I am constantly in awe of his progress. Today is one of those moments that I will treasure- the time he was able to handle a wrong order.

Having A Successful Picture Day

Pictures have always been a struggle for us. People who have seen our pictures think that I might be joking, but I am not. To get the one picture that I post, I usually have to take 20 pictures or more. My kids are not the" look here and say cheese" kids. Pictures are difficult for us because:

·         My son has a hard time making eye contact

·         The bright flash upsets both kids

·         My children do not have the core strength to hold a pose very long

·         My daughter hates to be touched, so the photographer cannot position her or tickle her to smile

·         Both children do not do well in crowded places or places with much movement

Today, both kids had picture day at preschool. I talked to the director of the school about my kids and their struggle with pictures. The director then made accommodations for us to take pictures early before the other students were around or in line. This would limit distractions and allow the photographer to specialize the photo session, so my children would have a great experience.

The morning of the session we talked about taking pictures. We even played a game called photographer (where the kids took turns being the photographer and taking pictures). Right before we left for school, I tried to do a pretend photo shoot with my son, but he told me, “I only want to smile for the photographer." I really hoped that he kept his word and would smile later on.

Before the session began, I talked to the photographer about my children. She wanted the session to be successful too, so we went over the dos and don’ts. I also brought a plastic container of sour candy to shake to help my kids look and focus. To my surprise, the photo session went well. They both earned their candy! I can’t wait to see the photos. I am so thankful for people who understand our situation and work with us to make sure my children have positive experiences.

The Importance of Routine (For A Child With Anxiety)

All children need structure, a set of routines that make them feel safe. Structure helps take away the fear of the unknown. When you have a child that suffers from anxiety, structure is a must.

My son requires extreme structure. He needs his days mapped out for him. He has a visual calendar of his activities, as well as, a visual weekly calendar describing each day’s routines/ activities. As long as we are following his schedule and he knows what is next, his anxiety is at rest. When a new scheduled activity pops up on the calendar or things change, my son becomes extremely anxious to the point where it is hard for him to function.

This week, we had our beautiful routine destroyed by three snow days. Most kids are excited having a snow day (where they miss school). My son was not. He was very upset that we were not following the calendar and going to school. I tried my best to make his day similar to his regular day by having him do school activities at the kitchen table during school time. This seemed to help, but he was still thrown off during these days.

To add to it, on Wednesday (another snow day), we had Ash Wednesday church services. Even though it was on the calendar, he was upset that we were going to church on Wednesday because church is on Sunday. I tried to explain and reason with him, but he was not having it. He cried all the way to church. Once inside, he hid under his coat for most of the service. Then, he screamed during the time of ashes. The Decan was really sweet to him and said,”It is okay, you don’t have to get them. God bless you.” I was thankful for his response.

On days where we have change or our schedule is different, I will try to help my son by:

·         Putting it on the calendar, so he visually sees the change or new event (sometimes we even do a countdown to the new event)

·         Talk about the change or event

·         Watch videos or read books about the event to ease anxiety

Sometimes these three things help and sometimes they don’t. When they don’t, I just try to encourage deep breathing. I provide a retreat area (even if it is hiding under a coat or blanket).  I also give him deep pressure.

Once the snow days were over, and we got back into his normal routine, my son again flourished. His therapists said he had the best sessions that he has had in a long time. He was very focused and happy. My son is very happy to be back to his daily routines, and I am too!

Providing For Special Needs Children During Sunday School

One of the hardest things for a special needs parent to do is leaving their child in someone else’s care.  You worry about your child’s needs being met physically, emotionally, socially, and spiritually. Last year was our first year that we had an amazing Sunday School teacher. She allowed me to have a peace of mind during my bible study because she got it. She was a mother of an autistic daughter and knew how to care for my son. She knew how hard transitions were and gave him deep pressure when I left. She knew how to engage him. She knew how to calm his anxiety. She even knew how hard change was on my son and would call us a day before she was absent to allow me time to prepare my son for this change. She really was a blessing.

In previous years, the teachers didn’t know what to do with my child. They were volunteers working their shift. Because of the lack of training, these things happened:

·         My child ended up in a different classroom setting than his peers (usually with younger kids)

·         My child got hurt because the teachers were not closely supervising the children

·         My child was avoided and basically allowed to sit in a corner doing what he want as long as he didn’t disrupt anyone

As a church, who can love on special needs kids more than the body of Christ? I understand that some people feel scared to work with children with special needs, but they are only scared because they do not know how to care for them. The church needs to train everyone that cares for children and that training should include children with special needs. Training should include: following a routine, maintaining a calm environment, being careful with physical touch, working strategies for special needs kids (modify environment, have a special retreat space, deep  pressure, chew devices or crunchy snacks, closer supervision), and knowing how to deal with difficulties (behavior management).

Parents should also fill out forms before their child attends Sunday School that shares the child’s needs. Parent should explain strategies that work best with the child. The parent and teacher should also have open and honest communication. Parents are the best teachers and informers on their child’s needs. The church should utilize this when caring for special needs kids.

This year we have also been fortunate to have a great Sunday School teacher who understands my children. She has two sensory children of her own. I think our communication has made this year so successful. I am very thankful for all the love she gives to my children.

Special Needs at Church (During Sunday Service)

Church for a lot of people is a place of peace. For our family, church has been a struggle. I never noticed how over-stimulating church can be until I had a child with special needs. In church, you have different lighting in different areas, loud music, different smells (incense), people wanting to touch you/ shake your hand/ hug you, and close seating in a large group setting. For my children, it was too much. For a year, we were at a large church with over a thousand members coming in every Sunday. It was so overwhelming that we never were able to make it through the sanctuary doors. We sat in the lobby area with speakers to listen to the service. We were glad that the church made this accommodation for us.

Six months ago, we decided to change to a smaller church. Our church now averages about 300 people every Sunday service. Before switching churches, we prepared the kids by going to the church to visit and look around on a non-Sunday. We also did role play activities practicing how to act at church. Now, our children are actually sitting inside the sanctuary of our new church. We always sit towards the back, and on the end, so they do not feel crowded by other people.

If you are struggling at church with your special needs child, here are some things that might help:

1.      If your child doesn’t feel comfortable in the sanctuary, see if the church will allow you to listen from a special room or lobby area with speakers.

2.      If your child is able to go into the sanctuary, try sitting in the corner or in the back on the end.

3.      If your child gets upset by the sounds, bring headphones.

4.      If your child is nervous by the crowds, bring a blanket or hoodie jacket so that they can hide in it to feel safe.

5.      If your child is unable to be still, bring a fidget toy for them to interact with.

6.      If your child is nervous, try role playing and reading books about going to church.

I hope these suggestions help your family have a more peaceful time at church. I know how hard it can be. At one point, I wanted to give up and just watch church on television, but then, I was missing out on the fellowship of church. If you can, go to a smaller church setting, it made a huge difference for us. Some churches even have special programs for special needs kids and offer child care. That might be another option for you. I am so glad that church for us is now a place of peace again. Don’t get me wrong, there are some hard days, but our main struggles are now behind us.

Compassion

Today is Compassion Day. Compassion is showing sympathy or concern for someone else. Yesterday, I got to experience compassion first hand between a pre-teenage boy and my toddler daughter.

Because it is Lent, we found ourselves last night eating pizza at a local restaurant that also has a game room. After eating a cheese pizza, the kids headed to the game room to play. My daughter became very nervous in the room with all of the lights and sounds. She would put money in a game, and if the game was too loud, she would say, “Too loud. I not like it.” Then, she would walk away. All night, I noticed a pre-teen (maybe 11 or 12) following us around and playing the games my daughter was turning down. I was glad the money wasn’t being wasted.

Once we were done playing games, we headed for the ticket booth. Because my daughter turned down so many games, she ended up with four tickets, whereas, her brother had close to 100. Shortly after we arrived at the ticket booth, the pre-teen boy was behind us. He said,”Excuse me, these tickets are for her. I have been playing her games and won them so she could have a prize.”I was almost in tears when he handed her 50 tickets! As she took the tickets in her hand, the biggest smile came across her face. She got to leave with three prizes because that boy had compassion on her.

It made me think, “What kind of world would we have if everyone showed that kind of compassion?” All we need to do is genuinely care for the person next to us. Then, we could change this world one person at a time.

No Touch

My daughter has always been tactile defensive. She is very sensitive to touch. When she was younger, she would respond in two ways: screaming or freezing while hyper-flexing her body. Nine months ago we thought that she also might not feel pain since she would cry when she fell or would just freeze when another child would hit or scratch her.

Yesterday, while she was in the waiting room for therapy, another little boy approached her and touched her shoulder. He wanted her to play with him. For the first time ever, I heard her say, “No touch!” I couldn’t believe it. Instead of screaming or freezing, she used her words! The little boy did it a second time, and she said, “No touch me!” I then explained to him that she didn’t like people to touch her, but if he  used his words, she might go play with him. Then before he had a chance to ask her, my daughter’s therapist took her to the back.

While she was in therapy, I reflected on how far she has come in just the past nine months. I am so proud that she can finally respond to touch in a positive way by using her words. This is huge! I will count this day as a win!

He Is Really Smart

He is really smart. I have been told this by doctors, therapists, and teachers who rave about his intelligence. This always makes me so proud, but today it left me frustrated. You see, my child is one of the ones in school that will always fall into the cracks, and I will always have to push for him to get any services.

Today, his preschool director questioned filling out our therapy insurance paperwork because my child is so smart. She said that out of 16 kids:

·        he is one of three that is reading

·        he is one of four that can count past 60

·        he is one out of eight that identifies all shapes including pentagons, octagons, cones, cubes

She also told me that even though she does think that he needs speech, he has an advanced vocabulary.

As far as behavior, she said that he is always very polite and a delight to work with. Around large groups of children, he tends to be anxious but will calm himself down and try new things. He also does awesome in small groups.

She thinks he will be fine next year in Kindergarten and doesn’t think that it will help for her to fill out the form. What she doesn’t understand is how much support I give him. He is doing well because I not only send him to preschool, but I do a home school curriculum with him as well to enrich him. I take him to three hours of Occupational Therapy, one hour of Physical Therapy, and two hours of Speech Therapy to help him regulate his system, coordinate his movements, and speak clearly. He is also involved in soccer and gymnastics to work on coordination and social skills.

Believe me, I love that he is smart. I just wish it wasn’t so hard to get him what he needs.

Vocal Stimming

When my son lost all language, the only sounds he would make were repetitive humming noises. His Speech Therapist didn’t know how long it would take him to gain his language back, so she taught him sign language, so we could communicate. After six months of signing and getting tubes in his ears, my son slowly started speaking words again.

As time went on, and his language grew, the only time he made repetitive noises was when he was nervous and self soothing. These days vocal stims appear maybe two to three times a month.

Yesterday, our family tried something new. We decided to go to a skating rink. The skating rink was dark with loud music. It also had a lot of visual movement with people skating in a circle with flashing lights. On top of all this, we were going to try skating for the first time (which is not an easy task for a child with a developmental coordination disorder).

As soon as we entered, my son began chewing on his sleeve. Once the skates were on, the vocal stimming started. We did two laps to see if it would stop once he got more comfortable ( since he stims when nervous). As we skated around, I tried to help him focus on something to ease his anxiety. I showed him the murals on the wall, and we looked for pictures (like I Spy).  After those laps, the stimming was still present, so I brought him some sour sticks to suck on. After sucking on the candy, the stimming stopped. He became relaxed in this new environment and skated! He even sang some of the songs while skating and laughing. I was so proud. We had a really good time.

These situations have not always been this easy. Therapy for four years has helped a lot. Over the years, I have also found out what works best for my child. In this journey there is a lot of trial and error.

If your child is doing vocal stims, you can help by replacing that stimming behavior with something else:

·         singing

·         blowing- bubbles, gum, whistles, instruments

·         sucking- sour candy, hard candy, lollipop

·         chewing- gum, crunchy snacks

It also is important to find the cause of the stim. For my son, it is usually anxiety. Once he feels safe and regulated he is fine.

I hope our story brings you hope and helps you on your journey!