Something to Talk about....

     " Imagine going to another country and not knowing the language they use in that country. Not being able to communicate what you are wanting or what you need. This is what Mason is experiencing, he knows what he wants, what he needs but he doesn't know how to communicate that to you."  This is what Masons developmental interventionist told me when he was almost a year old. There were times he would get upset, angry bc he wanted something but couldn't communicate with me. Being his mom it would be frustrating and at times upsetting bc I felt I wasn't doing all that I should be doing for him.
      I was told from the coordinator I could not have a speech therapist till Mason turned 2. This seemed insane to me. I couldn't understand why the kids weren't pushed to their full potential at a younger age. Apparently other places offer speech therapy at birth, I wasn't sure why Mason wasn't. With phone calls and my crazy mom voice I got him a speech therapist about 4 months before he turned 2.
      I was excited about a speech therapist in hopes she could teach me to teach him, we could finally communicate. Before the therapist Mason could sign bite,more,drink,ball, puppy and say mom, dad, bu bye,  and his favorite word no. When I first met the speech therapist I quickly learned this was going to be more challenging then I thought. She was not what I was hoping for. We didn't have the connection I have with Masons other therapists which is important. Most importantly she didn't have the connection with Mason. He didn't want her to touch him, play with him, he basically had no interest in her. When his other therapists walk in the door he goes straight to them, and sits in front of their therapy bag full of toys, ready to go.
      I didn't want to write her off right away but I could tell she wasn't for us. When I would ask her about sign language, flash cards, and books she flat out told me he wasn't ready. Ummm? hmmm.  Every idea I would bring to her from research and talking to his other therapists she would shut down the ideas quickly. I remember telling her "Mason will say momma and dada when he is asked but wont address us when he wants something." And she told me we need to play peekaboo so he knows who is mom and dad is. I was at the point I thought we were passed peekaboo. He was almost 2!
       When Masons other therapists would ask me about the speech therapist I found myself searching for nice things to say but she wasn't comparable to Masons other therapists. I felt I have learned nothing from her. One day his Developmental Interventionist was watching him eat and she was concerned with his eating pattern. She thought it looked like he was using his tongue to mash his food and not using his jaw to chew the food. She told me that wasn't her specialty so I needed to bring it up to the speech therapist. Oh boy. I can only imagine where this was going to go. When I mentioned it to the speech therapist and I asked her if there were oral tools we could use to help build his muscle strength, or if she could watch him eat, she flat out told me she cant. She cant what? She told me when watching children with special needs eat it makes her gag. What did I just hear? A professional just said this to me? I was offended.
      When I told Masons other therapists what she said they couldn't believe it either. They told me I can switch therapists, request a new one. My only hold up on doing that was about a year ago I "fired" an occupational therapist bc she was saying insensitive things like "Children with Down syndrome are like blobs bc of their low muscle tone" I didn't want to look like this crazy lady who no one was good enough for my son.
      So one of the therapist asked me what I would like to see from the speech therapist, what techniques and so on. I told her I want books, flash cards, oral tools, signing to be the main communication. At one of the meetings she brought up what I was looking for from the therapists and hinted around to the speech therapist. The next time I saw her she had brought books, and was wanting to work on sign language.
      SWEET! We are on the same page, or so I thought. But come to find out she didn't know much sign language so she thought it would be good if  Mason made up his own sign language. One day Mason was listening to music and was tapping his leg she said "there we go, lets use that as the sign for music." ummm but wait a minute he knows that sign as puppy. I wasn't on board with this. What is the point to make up our own signs? oh boy.
      We had a team meeting and the speech therapist was sooo proud of Masons progress saying he is making more noises, and different sounds since she came in. He also learned the sign baby. The only reason he picked up that sign was she would bring a barn and a baby. Through the session she would say "Wheres the baby? Is the baby in the barn?" When I was venting to one of my best friends she said "What the heck is a baby doing in the barn!??!!" My thoughts exactly. And how is the sign "baby" going to help with communication? Is there a baby in this house? umm no. And where is a barn exactly? Is there a barn on a military post that I'm not aware of? doubtful. If those were 2 of many words she was working on I would be fine with that but nope, just those two words.
      One night I was researching where Mason should be at his age with language, and was watching you tube videos of other kids Masons age born with Downs. There was one girl Masons age who knew 40 signs. I literally cried. It was time to get a new therapist. That's just what I did! I called the coordinator and told her I needed a new therapist and I wanted one that was willing to work on the following things. Sign, and oral. That SAME week we got a new therapist. LET ME TELL YOU!!!! I was beyond Pleased! The minute she walked in she was ready to go! She wanted to know about Mason, my goals, where he was, my concerns. Oh yeah! This is what I needed. The entire time she would talk to me she was signing!!!! Her back ground was working with the blind and deaf! Through the first session with her she taught Mason 7 signs, gave me advice, gave me resources, and we set goals. Mason loved her from the get go. While she was signing (everything she spoke) he was picking up on it fast! I was very impressed and pleased! Finally!
       I was told from Masons occupational therapist before she retired "You ARE the driver of the vehicle, YOU determine the passengers for your journey! Don't forget that!"


 Techniques I use for Mason...
Flashcards
Signing everything (trying to master my signing)
books
videos
Mason plays on my tablet...these apps. starfall ABC, Lakeshore learning, Baby ASL  (the new speech therapist told me about these and Mason loves them and has learned a lot from them.)

*Children who demonstrate low muscle tone in the mouth and facial areas may benefit from oral-motor activities. When the child is able to gain better control over his mouth movements, he may improve his speech and language development. It can also be helpful for the prevention of choking. Using whistles and straws along with chewing on crunchy foods such as carrots and celery are typically recommended oral-motor activities.

 

Oral motor activities...

Eating things like apples, carrots, beef jerky, celery, licorice,

drinking from different size straws

Using different texture spoons, forks ect

Chewing gum

 

Has drank out of a straw sippy cup since 4 months old!

Loves reading! Apparently we read a lot of the same books bc before I even flip to the next page he is signing what is next.

Signing "water"

Flash cards another mom sent me and I printed off...

Books Books Books!

Loves his apples!

more Apples

 

Where Mason is now...

 

Words he signs

*apple

*puppy

*mom

*brother

*dad

*puppy

*more

*thank you

*please

*no

*mickey mouse

*bite

*drink

*baby

*bye

*all finished

*help

*ni night

*fish

*zebra

*ants

*snake

*bath

*book

*music

*drum

*shoe

*please

*milk

*star

*again

*house

*ball

*climb

 

Words Mason says

* don't

*no

*biiii (for bite)

*ink ink (when signing drink)

*ished (when signing finished)

*momma

*dada

*buuuba

*Bye (no longer says bye bye...its just bye now)

*baby

* pole (when signing apple)

* counts to three...

*Go

*ball
*oww

 

 

Songs he does actions to...

* Itsy bitsy spider

* Monkeys jumping on the bed

*wheels on the bus

*twinkle twinkle

*patty cake

*Mickey Mouse Club house (sounds out the vowels)

 

Sounds he makes....

* a cow says...

*a pig says...

*a snake says...

*a kitty says...

* a train says...

* a car says...

* A dinosaur says...

*blows when asked if it is windy

 *what a fish does (smacks his lips)

Body parts he points out....

*nose

*tummy

*eyes

*hair

*tongue

*hands

*When I tell him to go up up up...he reaches high then I tell him...down down down...and he touches the ground.
*I ask him how big he is...he reaches up while trying to say...soooo big
*Will attempt to sing the ABCs only a few letters correct
*blows kisses
*says "shhhh" using finger
 

 

I'm sure I'm missing several, I might add some later!

SPD...huh?

         Masons behavior has changed a lot since he has gotten older. I started seeing a huge difference when we would be out in public. Mason out of no where would vomit. Only in public (nice I know!) He would also do other things like gag himself, throw fits. As if we thought it couldnt get worse, Mason now reacts by banging his head on EVERYTHING! Not just a tap but very hard. He has bruises under his hair line on his forehead. Sometimes he cries, sometimes not phased at all.
      The head banging was periodically that soon (and now) happens about 100 times a day. He bangs his head on windows, glass, the floor, the wall, coffee tables, the grocery cart, anything basically. Theres never a warning sign its going to take place so its hard to prevent it from happening. When I first talked to his therapists about it they thought it was all behavioral. They thought he was a 2 year old and that was his way to get attention, or his way to show he was mad. I told them otherwise bc he not only did it when he wasn't getting his way he would do it out of nowhere sometimes. I talked to his doctor and right away she said "Sensory processing disorder" We now make doctor appointments to have his head checked to make sure he isn't hurting himself severely. She mentioned Mason wearing a helmet but my response to that was "Give him cusion? It will never stop!"
      At our last team meeting I told the team I wanted to focus on sensory. It was my biggest concern. The entire team of 5 was sticking to their guns the head banging was behavioral. But I was sticking to my guns that it was something more. When researching and talking to other parents one of the first things mentioned was autism. About 10% of children with Down Syndrome are also born with autism. As I was reading about autism (bc I don't know anything about it.) I went through the check list and only sensory was the one that matched with Mason. When I talked to his team and asked how I go about seeing if he was autistic the therapists were shocked I mentioned it. I told them I know its crazy but when I look up head banging or sensory issues, Autism is the only thing that came up. They understood why I was mentioning it so they humored me and did an autism test. It came back he was unlikely to have autism. I begged for answers. They didn't realize the extent of Masons head banging until that day. It seemed he was banging his head on everyone and everything. THEN THEY BELIEVED ME! Sensory! Sensory! Sensory! He was searching for that input continuously. I told them the doctor told me SPD (Sensory processing disorder) and one of them said "That's IT!" I didn't realize Sensory processing disorder WAS a thing, or a thing that didn't necessarily go hand in hand with another diagnosis. Whew! I was learning something new everyday!
      The team gave me information, websites to look at about SPD and boyyy did I find my answers! There it was, my answers! FINALLY! The sleepless nights and worries were about to come to an end!

A little about Sensory Processing Disorder....
Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses
Some people with sensory processing disorder are oversensitive to things in their environment.
SPD creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, and other impacts may result if the disorder is not treated effectively.
 Children with SPD have trouble integrating sensory input.

Mason was diagnosed with SPD recently so with that we got an occupational therapist who comes weekly to do Sensory Integration activities. When I first met with her she could tell right away what she needed to do with Mason to help him in the long run. She was telling me about the Wilbarger Protocol.

A little about Wilbarger Protocol...
*The complete routine usually only takes 2-3 minutes.The first step in the therapy involves using a soft, plastic,sensory brush which is run over the child's skin, using very firm pressure; it is like a deep pressure massage. Brushing starts at the arms and works down to the feet. *The face, chest, and stomach area are never brushed because these are sensitive areas that can cause adverse reactions.
*The brushing therapy is initially recommended every 2 hours while the child is awake. Therapists usually re-assess the level of brushing after two weeks. At that time they may modify the program. *The brushing continues as long as the individual benefits from it.

 

The therapist told me this technique is time consuming and it needs to be done every 90 minutes or 2 hours at the most. She was told when talking to other therapists that if there was a parent who would do something to this extent it would be me. So when she came she brought books, print offs, time sheets, and the brush! She was ready to go if I was. The thought of being able to go in public without my son screaming, or banging his head made it worth taking up on the challenge. Where do I sign? Lets do this! In order to start I needed to learn the techniques properly bc I would be the one doing them to Mason. The therapist first did the techniques on me then I needed to do them on her so she could make sure I was doing them properly. We recently finished week one, Mason loves every second of it. (I will blog more on the outcome when we are completely finished but I can say that Mason bangs his head maaaybe once or twice a day now.) ohhh YEAH!

This picture was taken AFTER a session of the protocol. Mason took the brush from me and wanted to do it himself. (we don't do the tummy FYI.)

 

Along with this assignment the Occupational therapist gave me, she also told me doing sensory activities were beyond important. I needed to do up to 5 sensory activities a day on top of the Protocol. ALOT I KNOW!

Before I had Masons team on board with this sensory issue I started doing research of my own. I made sensory containers, did different sensory baths, sewed a weighted hat for Mason, also stuffed a bears behind with rice so it could be a weight on masons lap to calm him. When I told his Occupational therapist the tools I have used in the past she said "I don't even need to be here!" I seem to hear that a lot but yes yes she did! ha ha.

Hair Gel with food coloring

Color drops bought at Walmart

Sensory to the mouth. Loves Apples

Sensory boxes (Not in love with them)

wearing his weighted hat

Trampoline in the house filled with balls (one of his favorite things to do)

Sensory boxes (still not impressed)

 Stimulation from different toys (music,vibrating toys ect)

Jets, cut up swimming noodle for a sensory bath

 

Some other techniques the therapist wanted to add was teaching Mason to go down the stairs head first, doing the wheel barrel walk with him, massages, bear hugs, firm touch, tighter clothing, sticking to a strict schedule so nothing comes to a surprise to him (has had a schedule since he was a baby.) Also setting a calm environment when he sleeps by having dim lights, soft music. (he has a radio that plays nature sounds such as rain storms, birds, rivers ect) 

A few reasons sensory play is important

- Sensory play helps kids comprehend items in their environment
- Sensory play makes the data collection process function more effectively for children
- Sensory play speeds learning
- Sensory play increases awareness of a child's body
- Sensory play strengthens the sense that a child is engaging
- Sensory play can provide comfort and calm for a cranky, irritated child

It takes a lot of hard work, dedication, consistency and persistence, but in the end, you will have a thriving child who can regulate sensory input much more effectively.