Category Archives: SPD

The Biggest Challenge of Parenting a Child with Special Needs

The Biggest Challenge for Parents of a Child With Special Needs

I’ve previously discussed some of the challenges we’ve faced with parenting Jude. Parenting any child has it’s challenges but parenting a child with special needs can be extremely tough especially when those needs aren’t obvious to the typical bystander.

Let me elaborate. Jude started at a new school this year, a school which we were very excited about the possibilities it would offer a child especially like Jude. As with any type of transition he’s had his struggles and while he’s rapidly excelling in some areas (academics) he’s still struggling in others (behavior). I’m not the type of parent that thinks my child can do no wrong however, it is extremely difficult to hear that your child is problematic at school. Whenever Jude struggles with his behavior I take offense in my parenting even though I know there are more issues at play than a lack of discipline.

I think the biggest challenge I’m facing right now is accepting that I’m doing what is in the best interest of Jude even though the results aren’t happening as quickly or as easily as I might expect. And learning to NOT CARE what others, who aren’t apprised of the situation, may think. The parenting community can be very judgmental, we all think we know the “best” way to parent when in reality we are all just doing our best with what we know. I’ve personally learned to be a lot less judgmental of other parents after having dealt with glares, snide comments or other ignorant remarks of my own. I will admit it can be tough and I’d love to be able to explain our situation to every passerby but that just not realistic.

I am constantly reminding myself that only Joe and I (and a handful of others) are the only ones who really understand the depth of what is happening in our family. Together we’ve experienced the hardest of hard days and rejoiced together after milestones are met. We’ve cried together, prayed together, sought council together. We are the few that are able to see the amount of growth and development that has taken place over the years and have hope for what the future holds. And in reality we are the only people who matter in this situation.

Publicly blogging about a child with special needs is sensitive and somewhat taboo but there are two main reasons I blog about our challenges with Jude:

  1. To document our journey. I can look back and really see how far we’ve all come. I can remember the hard times, the things that didn’t work and the things that did. I can rejoice in our journey because it’s brought us so far and I’m really proud of Jude.
  2. To share our journey with others. I truly hope this post finds it’s way to the screen of someone that needs it, that needs to hear they aren’t alone.

We still have a long way to go but I’m slow learning embrace that Joe and I get to share in this unique journey together. It’s a rough road but we will undoubtedly grow and be changed throughout the process.

The best things in life aren’t obtained easily and there is no doubt in my mind that this experience of parenting Jude will be one of the best things I do with my life.

 

My anxiety and Jude’s SPD

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I worry a lot about Jude. As a mother I think it’s pretty typical to worry about your children but when you sense something might be a little “off”about your child it causes you too over analyze every little detail.

I want to talk about how I deal with Jude’s SPD (and other sensory issues).  To be honest, it’s pretty tough at times. His energy level is off the charts almost all of the time and his constant movement makes me anxious. In some ways I’ve become accustomed to it but when he’s around other children his own age I really notice the difference.

I find myself constantly fussing at him to “STOP JUMPING” or “sit down”. He jumps a lot especially if he is excited. I think what is difficult for me is that I don’t know how to harness his energy. I used to think that he needed to run and jump to get his energy out but I’m learning that just fuels his energy level. He is actually the most calm when his brain is focused on a task like building Legos or writing books.

Imagine someone constantly pacing around your living room all day. Bouncing back and forth between the walls and chattering on about everything. It’s nerve racking. Sometimes I hide in the bedroom just to make the room stop spinning.

As much as his constant movement stresses me out my desire to help him stresses me out even more. I want to help him integrate into social scenarios without changing him. His sensory issues may be a challenge for him on some levels but I know they can also serve him well as he gets older. His passion for life is what makes him so uniquely Jude and I don’t want to do anything to crush his spirit. But at the same time he needs to be able to function appropriately in social situations.

We are doing and have tried so many different things to help him. Minimal screen time. Schedules. Charts. Gluten Free Diets. Dye Free, Chemical Free, All Natural Diets. Occupational Therapy. Sports. Supplements. Etc… My brain is exhausted and my nerves are shot. I know that worrying about him won’t help him but it’s part of my motherly DNA to worry.

 

Preparing a Child with SPD for Transition

SPD Transitions

Today Jude will transition to a new class at school. His teacher is leaving and they are combining the 2 kindergarten classes (it’s a small private school so the combined class will only be 13 kids). Because Jude has SPD, transitions can be difficult so over the past few days we’ve been trying to prepare him for the big change that is coming.

Here are a few of the ways we’ve been helping him prepare for the big change at school:

1. Talk about it, often. Every time we talk about school, friends at school, or anything related we mention the upcoming change. We are very specific about what all will occur and when it will occur. Keeping him informed is key, it allows him time to digest what will happen rather than springing a surprise on him.

2. Stay positive. We try to emphasis the positive things about the change. He’s getting a fun new teacher. He will have more friends in his class. Etc… I also try to make sure I have a positive attitude about it because it will help him remain calm and assured.

3. Count down. Each day that passes we note how many more days we have until the big change. Again we remain very positive and make it an exciting transition that he will look forward to.

4. Keep other changes to a minimum. Don’t make any other big life changes for awhile. I’m glad we decided to put the boys together in a room several weeks ago because I wouldn’t dare spring that much change on him this week. I hope to keep the rest of our daily schedule pretty straightforward this week, if possible, to prevent transition overload.

5. Expect some resistance to change and be ready to offer support. I know Jude may have some difficulties transitioning so I’m preparing myself now so that I can react appropriately by giving him the reassurance and support he needs to integrate smoothly into his new environment.

To be honest I think the transition might be harder on me than him. Over the past few months Jude’s teacher has been such a huge blessing to us and has helped us tremendously deal with Jude’s SPD. She keeps us well informed and has encouraged us to seek occupational therapy and other treatments that have proven to be of great help. I am so thankful that she has taken the time to help not only Jude but us to make his first year of school a success. We know his new teacher will be wonderful but it’s sad to lose such a wonderful teacher.

Explaining Sensory Seeking, SPD and My Son

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I could never seem to accurately explain Jude to people. Whenever I tried to describe Jude’s behavior my words would always fall short. He has to be experienced to fully grasp his “MORE THAN” nature.

Like most 5 year old children Jude is active, unaware of personal space, emotional, loud, and full of energy but there’s more to him than typical 5 year olds. Before we met with the occupational therapist and before we had a diagnosis I knew something was different. Even though I couldn’t explain it I could clearly see a difference in Jude’s social interactions, especially when he was with other children his age.

Then we met with an occupational therapist and even before his evaluation was complete she said she could tell he was a sensor seeker. She explain Sensory Seeking like this, “It’s like wearing a glove, you can still feel things but not the full sensation as when you are not wearing the glove. Jude’s senses are like being in a glove, they require more input to meet his sensory requirements.” That made sense to me. He is like most children his age just with a little “more”.

He needs MORE movement which is why he is always jumping.
He needs MORE auditory input which is why he hums when he is playing.
He needs MORE physical touch which is why he has problems with personal space.
He needs MORE visual stimulation which is why he likes bright lights.
He needs MORE physical/muscular stimulation which is why he likes to rearrange furniture.
He needs MORE body awareness which is why he is constantly running into things.

He seeks MORE input which is why we seem to have trouble managing his behavior. He wants to do the right thing but can’t seem to find a way to meet his sensory needs without breaching the boundaries of acceptable behavior.

What we initially thought were exclusively behavioral issues actually have a deeper root. However, in no way do we use SPD as an excuse for poor behavior instead we use what we are learning from observing his occupational therapy to alter our approach to help him meet his sensory needs and correcting his behavioral issues accordingly.

Jude is a very bright kid, he does very well in school when his social and behavioral struggles don’t interfere with his daily activities. Treating SPD with occupational therapy and adjustments to his “sensory diet” won’t rid him of SPD but it WILL help him learn how to properly meet his sensory seeking needs. He will learn to self-regulate and we will learn how to support him along the way.

Hope found in a diagnosis – Sensory Processing Disorder

Jude52 I’ve been very hesitant to write this post because I want to be sensitive to Jude but I also want to share information that other parents might find useful. So for now I’m just going to share MY story.

For years Joe and I have struggled with parenting Jude. He’s a very sweet, kind and fun-loving child but he has always been a little bit MORE than most kids. Both Joe and I are easy going laid-back people so to have a child that is outgoing and full of energy was a huge curve ball in parenting. We read books about parenting the “spirited-child”, consulted friends, and tried many different parenting techniques but little was helping us properly meet Jude’s needs. I began to feel defeated and like I was doing something wrong. I questioned every parenting decision I made and was consumed by trying to find something that would work for Jude. It became so overwhelming at times I would break down crying because I felt like a parenting failure. “Why was my kid having so much trouble with everyday kid emotions and interactions?” I was emotionally and physically drained.

Everyone told us that Jude was just “active” or “just being a boy”, which was of no help at all. Of course he’s being a boy, he is one. I’d fully expect a preschool boy to be running around full of energy. But when all the other little boys stopped running mine kept going. Why?

I feared that when he went to school they would try to label him and want to medicate him. So I started reading. I read A LOT. I read about ADD, ADHD, Autism, Spirited Children, Learning Disorders, Bi-Polar, Ect…. but none of those diagnoses fit Jude. It wasn’t until Jude started Kindergarten that I ran across an article about Sensory Processing Disorder. I’d heard of SPD but didn’t know anything about it. As I read about the “Sensory Seeking” child it was like someone had been watching Jude. I felt relief and a little overwhelmed.

What does it mean for a kid to have Sensory Processing Disorder? I didn’t know anything about SPD or how to treat it. Where do you start?
I talked with Joe.
I talked with Jude’s teacher.
I talked with my parents.
I talked with other people with children that have SPD.
I searched the internet.
I checked out books from the library.

For several weeks I studied SPD before finally deciding to call an Occupational Therapist. Even though I was convinced that Jude has SPD, I knew I needed to hear it from a professional. Before learning about SPD I didn’t know what an Occupational Therapist was. I didn’t know if I needed a referral from our pediatrician. I didn’t know if it would be covered under insurance. I didn’t know a lot of things but I knew I needed to do something, so I just called.

A few days ago Jude and I met with an occupational therapist for an evaluation. He took a few tests, played with some toys and talked with the occupational therapist. The test results haven’t been finalized yet but the therapist said that just by observing him she could tell he will certainly qualify for therapy and is a sensor seeker. I felt relieved and hopeful as we left the therapist’s office.

No parent wants their child to have a special need but to know that it’s more than just behavioral is kind of a relief. I feel hopeful now that we have a diagnosis that we can work together with the occupational therapist to help Jude. It’s going to be a lot of work but instead of spinning our wheels I think we’ll make some headway in the right direction.

Parenting is tough work ya’ll.