#parkermeetsworld

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Today Parker was teething and in a bad mood from teething but I feel like his compression vest helped a little! #specialneeds #lifeofaspecialneedsmom #compressionvest #spd #sensoryprocessingdisorder #sensory #parkermeetsworld

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So today we strapped Parker's tumble forms feeder seat into the wagon and walked to the park in our subdivision. We strapped the feeder set into the tire swing and played on the tired swing. He loved going down the slide as well. We had such a fun day!

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Update!

We are finally all settled into our new home and things are back on track. Here's what's been going on with us!

Scheduling is back to normal and going excellent! Although parker is still not sleeping. We've been doing so much to try and get him sleeping better. We have tried upping his melatonin. We tried essential oil. Were using a heated aromatherapy bear. He just won't sleep so basically we are tired. All of the time.

Appointments have been very little lately. We had a genetics appointment and it was the same. Suggestions for new tests. Pictures...Updates...yada yada. Pediatrician appointment went well. We go back in 3 months because parker has not grown in a year and it's looking like we'll be going back to the endocrinologist. 

Therapy is going great. We have a new OT and she's going to be working with parker's sensory needs. Parker is turn taking in speech therapy. He's also started to anticipate food, clap his hands together, and comfort himself with rocking. His core is getting very strong and her can sit up with support but has yet been able to balance himself or actually sit by himself. 

We are doing well in general. We've moved to a better home. We're on the lake, we have access to a pool, and playground as well so these things are awesome for Parker because HE LOVES water.

Christmas went great as did new year and he got some amazing toys that work so well for special needs children so I will definitely share some of these toys with you guys! 

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Off to grandmas!

Parker and I have left home and we are at grandmas for two weeks! Which means we'll be missing half of a month of therapy. But that is alright because i am still making him work! We arrived Saturday and went to my nephew birthday party. Parker had a blast. He was laughing and screaming at all of the lights in chuckie cheeses...which reminds me...Parker has been diagnosed with CVI (cortical vision impairment) it's late so I wont go into detail but it's something that definitely needs to be covered. Toodles!

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Hey everyone! So sorry I have been out of the loop. Since my last post I have been extremely under the weather. A lot has happened and unfortunately we lost the baby we were expecting. :( I plan on picking my posts back up. We have been doing a lot of things and a lot has happened that I need to cover! Stay tuned.

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Big News!

I've been MIA lately. Mostly excuse I'm extremely tired and my head has been way too blank to write...due to pregnancy! Parker is going to be a big brother! We are super excited! Too bad I'm just way too tired to write. More posts coming soon though!

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Things I'd wish you'd stop saying...Sincerely, A special needs mom

Sometimes you say things. Things that hurt me. Things that cause me to grit my teeth. You probably don't know these things bother me. But they do. 

1. Using the word "retard" in a joking matter.

When I hear you say this word, it hurts. It pains me that there in a world full of colorful vocabulary the word you chose to describe something is by saying "retard" or "retarded". I know you're better than that. We all are. Consider those around you and monitor your language, please. 

2. Saying "God gives special children to special people."

(This one is a hot button)

No. He doesn't. I was not selected to have a special child. It just happened. It's something genetic. Like being born with blue eyes. Special needs children all over the world are abandoned by their parents. KILLED by the hands of their own flesh. Put in hospitals where people treat them like trash. Special needs children sometimes end up in broken homes where drugs are involved. It's terrible and I refuse to believe the children who suffer, suffer for the reason that they were chosen when they can't even understand why.

I was not given a child with special needs because I'm a hard working mother. I am just a hard working mother who happens to have a special needs child.

3. Telling me to "Get a life" (a social life)

(yes, it's been said to me)

I would choose to be with my family and child and at my house. Why? Because I do a lot of things to take care of my family. When I'm not taking care of them, I like to take care of myself and spend time with them. Parker wouldn't thrive if I wasn't so involved with him and THAT is what is my number one priority. Making sure that my son succeeds. That is what makes me happy. Not putting myself out in the open scouting for a friend. Because honestly, finding friends is pretty frigging hard. 

Either way...it's not really your business to tell me how to live my life. Unless  you want to come do my chores for me :p

4. "You shouldn't have anymore kids."

Although you may not know it... Sometimes you're on this journey called life. You hit a few bumps. But do you put your life on hold? No. You keep going and hope the future may bring something that can heal you and bring more joy into your life. 

5. "I'm sorry."

I promise that you don't ever have to be sorry that my son is special needs. I'm not sorry. I love him just the way he is and every single day he surprises me. The smallest accomplishments are the greatest gifts. He keeps me smiling each and every day. He has helped me grow as a person. I am stronger. I am wiser. I care more. Most importantly I take nothing for granted. I appreciate everything my son gives me.

6. Saying "Well they can't really tell if he has (enter diagnosis here)"

I know it's crazy to believe doctors can detect things are wrong, when someone isn't able to tell them something is wrong, but there's a ton of new technology that makes it so. Questioning my trust in our team of doctors can make it feel like you a questioning me. If you have questions about how a test works, then just ask me how they do it! I'll be happy to explain :)

Gotta Run! Teething fussy baby on my hands! 

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The Wilbarger Deep Pressure and Proprioceptive Technique (DPPT) & Oral Tactile Technique (OTT)

You’re probably wondering, exactly what is the Wilbarger Deep Pressure and Proprioceptive Technique (DPPT) & Oral Tactile Technique (OTT)?

The Wilbarger brushing protocol is a therapeutical program that was developed by Patricia Wilbarger, a well known occupational therapist. Some may jokingly refer to her as the guru of OT (occupational therapy)! This program was designed to help those with sensory processing disorders. 

A sensory processing disorder is when your brain doesn’t process sensory signals in the right order, causing inappropriate responses. SPD is usually defined by being easily over stimulated or hard to stimulate. 

Doing this protocol will help regulate and normalize sensory processing. And when the sensory processing is regulated it result in better behavior and having appropriate responses to normal day activities. 

How has this protocol helped Parker?

He is less fussy during diaper changes, therapy, and changing positions. The oral technique has helped him stop regurgitating his food and gagging, which were a way for him to reset his “sensory bucket” when it had been filled to the max. This protocol helps normal daily activities from filling his sensory bucket.

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Parker's Struggle with Infantile Spasms

When did you notice something was wrong?

Around late November we noticed some regression. Parker was losing milestones he had accomplished during therapy. In December he started to become more irritable and wasn’t responding to therapy. Late December we noticed Parker would freeze up and scream bloody murder. These episodes would last about 5 seconds. I immediately felt in that something was wrong. I just knew there was something neurological causing this. So I picked up the phone and called our neurologist. She felt that it didn’t sound like a seizure but wanted me to try and catch it on video. I could never catch it on video but then the day after I called her it turned into this long episode. He would jerk forward and his eyes would roll to the back of his head. He would do this several times. I immediately recorded it. We took him to the neurologist the next day where they told us he most likely has infantile spasms. I remember feeling so scared because the amount of concern the doctor seemed to have. I could tell by looking in her face that she truly felt terrible she was giving us this dreadful news. She told us to go home, pack clothes, and head to the children’s hospital.

(Watch our video of Parker’s spasms below.)

How did they diagnose Infantile Spasms?

When we arrived at the hospital they started to set him up for his EEG (electroencephalogram). An EEG is used to detect abnormalities that are related to the electrical activity of the brain. They would record his brain activity for the entire night. There were electrodes they attached to his head and secured with a bandage. During the EEG they look for a particular pattern called hypsarrhythmia (HIP-sa-RITH-me-ah). This is a chaotic pattern that is often helpful in confirming the diagnosis. About 2 minutes into the EEG he started having clusters of hysarrhythmia that confirmed he has IS. They could not confirm why he was having them because his MRI was completely normal.

(In the hospital where we received our diagnosis)

What is infantile Spasms?

Infantile spasms, also know as west syndrome, is a very rare epilepsy disorder that normally occurs during the first year of life. About 1 out of 5,000 babies will have west syndrome. Most children with IS go on to have developmental delays.

(In the hospital with IS. Wearing him was the only way to help him sleep.)

How did you stop IS?

Our first step in controlling these spasms was by putting him on ACTH. Acth is a steroid injection and is used as a hard hitting drug to stop these spasms. We were giving Parker ACTH (Acthar gel) twice a day, alternating thighs. One week into treatment and the spasms were gone! The steroids made him eat an insane amount of food, they made him fussy, and he rarely slept. We went through 2 of the hardest months of our lives as a family. It was constant fussy, nursing, eating, and crying. No sleep, no peace, no nothing. After the Spasms were gone for two months we started to wean him. Once we started the weaning process we were very worried they would come back…But guess what…THEY DIDN’T! And within one week he was smiling again! 

Parker a week after starting the ACTH weaning process.

We then switched him to topamax. The only issue he has had with topamax is a not eating. Luckily that issue has been resolved. Topmax works great. It doesn’t effect his mood. It regulates his digestive system. There isn’t anything we really dislike.

So how are things going?

Things are going WONDERFUL! He is 15 months now He is 5 months spasm free and he is surprising us every day! He is now rolling over, propping on his hands, and interacting more and more! 

If you have any questions about west syndrome please feel free to contact me via Facebook, tumblr, or YouTube.