Parenting A Child With A Disability

As a mom, one of the most devastating things we can ever hear is that something is wrong with our babies.  The first thing we do is question ourselves and try to find out what we did wrong, or what we didn’t do that we should have, that could have contributed to our child’s disability.  In most cases, there was nothing we did to contribute to our child’s state.  For the cases that it was something we did, well, forgive yourself.  Children don’t come with instruction manuals, and we learn as we go.  We do the best we can with what we know.  Love your child, and seek the best for them, and you’re putting them at a great advantage in this world.  It’s challenging to parent a child with a disability, but we don’t give up.

I noticed some odd behaviors in my son when he was a baby.  He was around one, maybe a little earlier, and I started seeing some concerning behaviors.  I didn’t know where to turn to get the help he needed.  He was on time with walking, on time with potty training, on time with talking and meeting all of the milestones a regular pediatrician would look for.  It was a frustrating place to be to not know how to help your baby, or even know where to go to begin.

I expressed my concerns to family, and even to my husband.  Everyone said he’s a boy, he’s fine.  I knew different.

I expressed my concerns to a friend of mine who has an Autistic child.  She was able to point me in the right direction where I could get my son tested.  The day we went in for the testing and meeting, I left in tears.  My baby was 3 years and testing as an 18-month-old. He is now 5, turning 6 this year.  He was diagnosed with Autism Spectrum Disorder.

My husband took the news much better than I did.  Having a sister with a very serious disability, he was familiar with the challenges.  It took me some time to really wrap my head around it.  Having a support system really helped a lot.  My son has been in a program for special needs since he was diagnosed.  He has grown leaps and bounds.

While we still have some very challenging days, we’re grateful that we have days to spend together.  We’re grateful for the “easy” days.  He still has some obstacles to overcome, but with us supporting him, loving him, challenging him to grow and not settle, and teaching him not to accept defeat, but to fight for success, we are confident that he has a bright future ahead.

Mom, don’t give up! Some days will be rough.  I’ve had many days and nights of crying and being frustrated and feeling ill-equipped.  I have had to come to the conclusion that as long as I love my son with everything in me, and give him the best opportunities I can for his success, then I’m doing everything I can.  Moms, please don’t be too hard on yourself.  Your love makes more of a difference than anything else could make.

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Chronicles Of An Autism Journey

My son was diagnosed with Autism when he was 3 years old. I have to say it’s been nothing short of a journey since then. When you’re a parent who has never had experience with any sort of special needs, and you suspect your child has an issue, it can be overwhelming to figure out where to turn to start getting help for your child. I was blessed to have a friend that was familiar with the process because she has an Autistic child too.

The first place I went to to get my son help Child Find.  I got in touch with the Child Find in the area that I live in, but they had a ton of other resources.  I was able to get him tested and placed in a school that was focused on children with various special needs.  Over the next couple of years he was at the school, he made amazing progress.  The teachers challenged him, and had patience with him.  He absolutely loved his teachers, and we were very happy with the school.

When he moved on from the Early Childhood Center, he went to a general charter school. While he is on an IEP, we’ve learned this year that this school has not been the best ting for him. He has no problems academically, but his main challenge areas lie within the areas of sensory and physical.  He started having Petit Mal seizures, which are also called “staring spells”.  Those seizures escalated into Grand Mal seizures around 6 months ago.  The majority of the Grand Mal seizures have been in his sleep. I’ve learned that they affect his vision for days afterward. After taking him to an Ophthalmologist, and learning his vision was better than 20/20, I learned that the effects on his vision took days to basically recalibrate.

After seeing the neurologist, she recommended that he go to a non-public (private) option for a school that is better equipped to meet his needs.  Unfortunately, we have been unable to enroll him.  In the county we live, his current school has to write a letter saying they can’t meet his needs. The frustrating part is while they truly can not meet his needs, they refuse to admit it. He has regressed more in this school in 1 year than at any other point in time.

He is now receiving Occupational therapy and physical therapy on a weekly basis through a local hospital.  His school refused the services to him.  Chronicles of An Autism Journey is just the journey that we are going through with my son and living with Autism. My hope is that it will help someone who is on a similar journey. As the OT and PT teach me, I will be sharing what we learn in the hopes of helping others. What works for my son may or may not work for every child.

The pictures below were part of my son’s initial evaluation during OT.  The initial results we got back had him ranging from a 2-3 year delay in most areas. the trampoline has proven to be a very beneficial tool for children with sensory issues.  We put the ankle weights on him to help him with sensory input through his feet.  One of the challenges he has is where his brain is telling him his body is, is not actually where it is.  The ankle weights help weigh him down some so he gets more feedback through his feet.  The ladder is helping with his vestibular input as well as his vision.  He has trouble with heights so his OT had to come support him.  The net swing with ankle weights helps his vestibular input as well. It helps him to figure out where he is, and where his body is in space.  The tube helped to focus him, and help him coordinate with his motor skills.

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See what works for your child and what doesn’t.  I make no claims to be an expert. I’m just a mom who is learning on this journey with my son. What have you learned on this journey?

 

Photo credit: hepingting / Foter / CC BY-SA

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