Progress!

    Mason being in school has been a challenge. Not only for him but for me. It takes "learning to cope" to a whole new level. I don't have to explain myself on how much I love Mason bc I would do anything and everything for this brown eyed beauty! Coping is something I need to deal with. When I see other kids Masons age speaking sentences after sentences I have to come to terms that Mason isn't at that place YET and there's nothing I can do about it.  However Mason IS finding other ways to communicate. Through Sign Language, PECS, and he will also bring you to something he needs or bring it to you. When Mason first started school I thought everything was going to be compared to every child Masons age. But the teachers,therapists, and myself set goals realistic for Mason and every quarter we see if he has reached these goals and we set new goals or find different ways to help accommodate those goals.

   I thought It would be fun to share our goals we set and the report of Masons Progress from this last quarter. It is something his team and I have been working on and I am very proud of my little peanut!

GOAL ONE:
ECSE- Goals:
Mason will sort objects by color 80% of opportunities.
Mason will sort objects by shape in 80% opportunities.
Mason will sort objects by function (food, clothing,animals ect) in 80% opportunities.

Teachers Note: Mason is just beginning to match shapes. He is not yet sorting items by color or function.

*Student has not yet worked on this. goal not met at this time.

GOAL TWO
SLP- Language
Goals:
Mason will follow one step directions given moderate prompts and cues in 9 out of 10 opportunities.
Given four pictures items and one vocabulary stimulus word, Mason will identify the correct pictured vocabulary word in 9 out of 10 opportunities given minimal prompts and cues.
Mason will identify basic concept (shapes, colors, sizes) in 4 out of 5 opportunities given moderate cues and prompts.

Teachers Note: When Motivated, Mason is able to follow one step verbal commands in a structured activity to put items in and to take items out. At this time, Mason needs visual prompts to identify a named picture or item.
*insufficient progress made, goal not to be met on time.

GOAL THREE
SLP

Mason will use two to three word utterances (verbal, sign, pecs) to communicate what his wants and needs in 4 out of 5 opportunities given moderate prompts and cues.
Mason will use at least 50 signs consistently to communicate his wants and needs in three consecutive therapy sessions given minimal prompts and cues.
Mason will label 25 common objects (using verbal language, sign language or PECS.)

Teachers Notes: Mason is using sign language most consistently when making requests for preferred items or activities. His use of Jargon and babbling in the classroom environment has increased and is making vocal approximations of words. Mason will use the word "no" to refuse an item or activity. He attempts to sing along with familiar songs.
*Progress made, goal to be met on time.

GOAL FOUR
Social

Mason will initiate and maintain a peer interaction through 2 exchanges with minimal adult support in 4 out of 5 opportunities.

Teachers Notes: Mason will independently initiate hugging a peer when he is happy. With adult support Mason will share/ take turns with classroom materials.
*Goal met


GOAL FIVE
Motor

Mason will do pick up 10 small objects and put them in a container using a pincer grasp of thumb and pointer 4 out of 5 times.
Mason will put small objects off a Velcro board and put them back in a specific space on the board using opposition 4 out of 5 times;

Teachers notes: Mason is able to pick up small objects and put them into a container using a pincer grasp 2/5 trials. He can put small objects on a Velcro board and place them in another place on the board 2/5 trials.

**progress being made


Progress Progress Progress is everything! As long as we continue to move forward I am happy happy happy!

Things I am working on at home: Sign language! Sign language seems to be the quickest way Mason communicates. But I will verbalize while signing. Also looking into hiring a professional who will come to us and sign once or twice a week, or classes to improve my signing...lets face it, I'm not a professional! Mason currently goes to daycare once or twice a week so he can get his social skills. He tends to want to play with adults bc he always has. So putting him in daycare gives him more of an opportunity to socialize. Mason is drinking from an open cup during meals, and will use utensils without making a mess that has been great progress! Small motor skills, we do activities to encourage pincer grasp. At the beginning of school this wasn't there. He would use the "scoop motion" this too has been a huge progress.

Outside therapies: Currently he is not getting outside therapies other than myself. School seems to take up the majority of his energy so I am studying up on things I can do from home and carrying over things I have been taught the last 3 years. To stay physical and help with more of the physical therapy Mason has currently begun dance classes and will be back in gymnastics come spring.

Hes 3!

Mason will talk to anyone! As long as they don't touch him!

LOVES apples! I have to cut him off because he will eat one after another...

Always on the go!

Has recently learned how to sit on a regular swing and hang on...He knows when we arrive at the park and whew it is not fun leaving the park. Lets just say he's not this smiley.

ICE CREAM ICE CREAM He will scream for Ice Cream! I have taught Mason to sign for popsicle and Ice cream which is a sign I wish I never taught him. ha ha 

We were weeks away from getting Mason his own stair railing put in but he decided he didn't want one and is now walking up the stairs!

Still loves water!

Mason loves to read! What I find interesting is when kids watch TV kids will copy what the character on tv is doing but Mason he will copy from a picture in a book! For Example: Mickey mouse has his pointer finger on his chin, when we turn to that page Mason will do that exact thing after looking at the picture. He does this on every page!


About Mason...
Favorite food: Pasta! Anything with noodles
Favorite snack: Apples & popsicles
Favorite toy: Barney that sings, and Mickey mouse that whistles
Favorite book: All of them
Things he can do: Say more then 30 words, Sign more then 50 words, walk, walk up stairs, eat using silverware, drink from an open cup
Things we are working on: More sign, PECS, walking DOWN the stairs, potty training
Things Mason doesn't like: Crowded places. We solve this by putting him in his stroller with his IPOD and earphones.
What Mason loves: Mason LOVESSSS to be center of attention! When we go places he will approach a person and talk nonstop then go to the next person.
Ways of communicating... Sign, bringing things to me to show me what he wants sippy cup, empty plate, help turning on toys) and his new way is grabbing my hand and pulling me through the house to what he wants.
Medical: no issues, every 2 year appointments for cardiology, been cleared no longer needs braces for his feet (sure steps), usual checkups and shots.

Here we go...

 

 

First day of school…

The first day of school was difficult. When we first arrived at the school the kids were supposed to get in a line behind their teacher and hold the back pack handle of the child in front of them. I put Mason down to show him and help him but he ran away. He wouldn’t stay in line. So I walked him into the class room bc there was NO ONE to help him. When we got to the class room Mason ran right over to the rug to sit down. The teacher explained the routine to the kids. When arriving in the classroom they were to hand the teacher their folders, hang up their back packs, stand in line to wash their hands then sit at their desk and color. The teacher called out each child’s name and showed them where to hang their back pack. When the teacher called off Masons name….he was skipped. They didn’t help him, and show him, they just skipped him. At this point I didn’t want to leave. I didn’t feel comfortable. All the kids were in line to wash their hands and Mason was sitting on the rug with his back pack. This was EXACTLY what I didn’t want. I wanted him to be treated like the other kids and to have help to be able to do what his class mates were doing. Standing there a few minutes and realizing no one was going to help him, I took his hand to help him stand in line to wash his hands. When it was his turn the teacher was going to help him. He walked right into the bathroom, and Mason darted for the toilet while no one but myself saw him. (We all know what happens when he sees a toilet.)

It got to a point I was convinced I was never going to leave or I was going to take him with me and throw in the towel. But as I watched Mason getting help to wash his hands I took a deep breath, waved bye and left. I was there about 30 minutes. It’s hard to watch your baby grow up and not need you but harder not knowing if he was going to get the help he needed to succeed in preschool. During our meetings before Mason started school the team we were working with kept saying to me “We are professionals! He will be fine!” So I was holding them to it. One thing I don’t want, is to be on the teacher bad side before giving her a chance to learn about mason, to learn what his disability entails.

When I left him he wasn’t crying, and when I went to pick him up he was playing on the playground not crying. But I was informed quickly all he did was cry since I dropped him off till they went outside. He didn’t participate, didn’t eat snack, and cried so much he fell asleep. Of course when I hear that I think….”Did you help him?” “Was he alone?” “Was he frustrated bc he wasn’t getting the help he needed?” That night I drove myself nuts thinking about his first day of school. My husband came home from work and asked me how Masons first day was and I just cried.

 

Second day of school…

Every time we would go to Masons school if it was to fill out papers, IEP meeting, talk to the teacher, orientation I would put his back pack on so he would start to understand when he was going to school. The second day of school he caught on quick. He wasn’t having it! When walking to the car he would sit down on the side walk and not move. Nope, wasn’t interested. When we got to school still no help on walking him into class, So I walked him in again. Down came the tears. He knew what was going to happen. I hung up his back pack, stayed to help him wash his hands, and color with him a minute before sneaking out. I stood at the window and watched him for about 15 minutes. I watched him look around the room then start his pouting lip before crying. Talk about heart breaking. I wanted to run in there and take him with me!  When I picked him up the teacher told me he cried about 10-15 minutes when I first left then was fine. He participated, and ate snack. They had an assembly and mason showed off his dance moves. The teacher also told me she wanted to start a communication book. Every day she will write what he did, how he did, what he ate, and little notes. I was feeling a little more at ease. When I got home I started going through his back pack and found a paper that Mason colored. I was sooooooo excited to see he participated. BUTTTT then I flipped the paper over where there were letters to trace, color, and cut out and realized there was NO indication Mason did anything on that side. So again I thought…Why didn’t he have help? Why is he not expected to do what his classmates were doing? During therapies we would trace, color and cut by using the hand over hand method so why couldn’t the school? At this point I felt I was dropping Mason off at a daycare, not a school to learn.

 

Day 3

Same routine in the morning, I walked him in helped wash his hands, sat him down to color. The teacher told me she wanted me to start kissing mason, telling him I was leaving, then say goodbye instead of sneaking out. She felt he would be less sad bc he was pre warned I was leaving. So I did. He cried about 5 minutes they said and had a good day. On this day the classroom helper said “Ive been working for him to sign more, all done, drink and eat. He doesn’t want to sign. I told her….. He knew those signs and actually knew about 50 signs. She looked at him and said “I see what your doing.” Ha ha

 

Day 4

Same routine, I told him bye and left. Watched him cry. It didn’t seem like it was getting any better but the thought of the teachers telling me he would have a good day after the initial leaving made me feel at ease in a sense. When I picked him up I heard all great things, and was asked to write down all the signs Mason knows so they can encourage him to use them and teach him new signs. 59 signs is the number Mason can do. Woop Woop! In his back pack there was a brown paper bag that said put 5 items that tell about you…what you like, your favorite color ect. Oh boy, I stressed out about this bc I knew he would just sit there at school with no help so I thought of a little plan. I put in his favorite toys and a picture of him and his brother. These were things that when he sees he will sign immediately. The toys I put in was Mickey Mouse, Barney, a ball, a book and a picture of him and his brother. I also wrote a note saying what his favorite things were and a little about them.

Day 5

Mason goes to school Tues through Friday so I knew after having a 3 day weekend it was going to be difficult for him. And that it was. He was clinging on me and wouldn’t let me put him down. Didn’t want to sit on the rug, didn’t want to wash his hands. It was day one all over again. Im getting a little stronger and was able to pry him off, hand him over and leave. That was a big step. He had a great day but was very excited to see me! His teacher told me today that Mason may need to do “extended school” which is summer school. She said it could benefit him if he is struggling getting back in the routine after a 3 day weekend.

Day 6
      This day was easier, I walked Mason in his class and left. He was busy talking to a classmate. His teacher later told me he cried once he realized I left. Cried about 5-10 minutes. Today was the day he met his speech therapist. She wrote me a note, thanking me for the lists of signs Mason uses and also wrote she was taking this session to get to know Mason. She also wanted to know if we were using the PECS system. Which is a picture system. I recently have started this and found it to be successful for Mason.
Day 7
      "Bye baby, momma loves you." in return a little smile and a wave. I didn't have to walk him to his classroom, In our communication book I was told he didn't cry at all today!!!!

One thing I have learned in the first 7 days of Mason starting school is PATIENCE!!!! I'm trying REALLY hard to be patient. But I DO know and feel in my heart Masons teacher wants what's best for Mason. After all she fought to have him in her class after meeting him. This is a new journey, and I will find my way...eventually.

New chapter...

I get asked all the time if Mason is my only child because I act like a new mom with him. He is NOT my only child but I act that way with both my boys. I usually get asked this when asking a lot of questions, needing a little reassurance, and being a very and I do mean VERY involved parent. Truth is although Mason isn’t my only child or first child or this being my first time entering into the school district. This is a new path for me. Dylan and Masons paths are so different. So Mason being in the school it is new to me.

When Dylan was in preschool he went to a private Christian preschool. The things I wanted to know before deciding if this was the right school for him was…What kind of things will he be learning? What do they focus on? Discipline? What kind of environment will my 3 year old be in? As I was sitting in Mason’s school I realized my questions were very different. The things I wanted to know before Mason started school was…Who is going to help Mason cut, color, follow directions (because he doesn’t understand YET) What is going to be the method to diffuse the head banging? What’s the teacher/student ratio? Masons main means of communication is sign language. Is this going to be valued and taught? Or is sign language going to be disregarded. Have you (teacher) worked with a child with Down syndrome? How long have you been teaching? Do you have an open door policy? (Where I can stop in anytime I want/need) Can I have a team meeting when I ask? (Team meeting is to have a meeting with all the helpers, teachers, and therapists to get a review and see what they are working on and where Mason is learning wise.)

 

The answers to the questions I asked Masons school was… There will be a helper in the room for all the students so if mason needed a little assistance for cutting, coloring ect she would be able to assist. Head banging they would move him from the situation. His teacher hasn’t dealt with head banging so she was going to have a plan before he started school. (Before school started Mason no longer bangs his head) Sign Language will be valued and his speech therapist will teach him sign language along with verbal language. Masons teacher has been teaching for 6 years and no prior experience with a child with Down syndrome but there has been a few kids in the school district with Down syndrome. Open door policy is a yes, and yes I can have a team meeting anytime I want.

 

As a parent I want Mason to be comfortable and transition easily bc this is the first year of many in the school system.

 

My concerns for the school year…

*He will hate school
*Will be categorized
*He won’t be challenge or expected to do what other students his age are doing
*He will be frustrated bc of not being able to communicate other than sign language which I was told his teachers know a “few” signs.
*Not making friends bc of not being able to communicate with other kids other than sign language.

 My requests to the teacher…

To have a teacher with structure. Same routine.
To be able to have the same teacher both years of preschool
And to have a morning class because he was used to doing all his therapies in the mornings since he was a baby.

They accommodated all of my requests.

Mason's Team

MASONS TEAM...

For the last 3 years I have met some amazing women who have worked with Mason, educated me, and who we consider family. The next 3 months will be our last 3 months with these women. I am sad beyond words, they have inspired me, cheered me on when I needed it the most, educated me, and have become friends. 

When Mason does something  for the first time, crawling, walking, talking...ect. I send out a massive text to Mason's team. Let's face it even though the therapists think I don't need them they are WRONG and I enjoy them being part of every milestone! 

These women have developed a relationship with Mason and know him well. His likes, dislikes, wants and needs. These women have saw the crazy side in me, endured a million questions and they are still with us! ha.

I don't know what I am going to do without these women weekly but I do know (bc i'm told weekly) they are only a phone call away and will be forever in our hearts! 

"Early childhood intervention provides support for infants and young children who have developmental delays or disabilities, their families and communities, in order to promote the child development and inclusion

Occupational Therapist... Occupational therapists assist children and their caregivers to build skills that enable them to participate in meaningful occupations. Occupational therapists also address the psycho social needs of children and youth to enable them to participate in meaningful life events. These occupations may include: normal growth and development, feeding, play, social skills, and education.


 Developmental Interventionist:
 trained in education, early childhood education, psychology, social work, or sociology. 

MARY "If there's one advice I could give you, is know, YOU are the driver, you control who your passengers are when it comes to Mason. Remember that." 

Physical Therapy                                                                         focuses on gross motor skills to improve your child’s ability to move and function across all environments. number of physical and medical issues may delay your child’s development of various gross motor skills. She helps with basic gross motor skills of sitting, walking, running, jumping and riding a tricycle.

LAURIE 

"You are the squeaky wheel, Squeaky wheels get the most attention...BE the Squeaky wheel!" 

Speech and language therapy (SLP)                             communication between your child and the world around (family, school and community) him. Communication includes not only speech, but also facial expressions, smiles, gestures, and alternative systems such as sign language. Challenges emerge for many children with Down syndrome. A child who has Down syndrome may have more difficulty with expressive language (talking) than with receptive language (understanding).

 






MANDY "You're an awesome mommy!" 




 A little about TRE (The Resource Exchange) 

The resource exchange is for ages 0-3

It is a in home program where trained professionals come to the child, based on developmental delays or based on a medical diagnosis. 

MARY "If theres one advice I could give you...remember this, YOU are the driver, YOU control the passengers when it comes to Mason." 

SARA "I didn't know why Mason had so many therapists, then I met you... You know what you want for Mason and you won't settle for anything less. I'm the same way." 

 Service Coordinator

Guides families through the assessment and intervention process. They also assure that early intervention services and supports documented in the child's and family's individualized family service plan. (IFSP) result in adequate progress toward achieving the desired outcomes.

Music Therapy :

Music Therapists use  music to address physical, emotional, cognitive, and social needs of individuals of all ages.

CINDY  "YOU are Mason's advocate. No one knows Mason like you do."



Typically at Mason's age, the child would have one therapist. At this time he has 5. I had to fight for these therapist to stick with us bc of the service coordinator trying to convince me one was plenty. I feel that each one of these therapist bring something different to the table, and they have their own unique, individual relationship with Mason and I don't think Mason would be where he was without them. Mason has 5 therapists, does about 5 hours a week with these therapist. I wouldn't have it any other way.

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.