Special Needs Parenting With FFNCO

Written by Louise @insidethecookiejar

I have 2 children with special needs.

James is 8 and he has autism, sensory processing disorder, asthma, epilepsy and a sleep disorder. 

Joey is 4 and he has Periventricular Leukomalacia (damage to the white matter in his brain), cerebral palsy, autistic like tendencies, sensory problems, and a chromosome deletion genetic disorder.

To say it’s been a bit of a journey would be a massive understatement. 

James was diagnosed with autism at age 2, the doctors said things like “he might not learn to talk, learning Makaton would be beneficial.” And “don’t push him to toilet train, he might not be able to because of sensory issues”

I was so determined I sat that little boy down and told him that yes he CAN do those things and I would do everything to help him achieve normality.

6 years later and I am a proud mummy to one chatty little monkey who most certainly does use the toilet, he attends mainstream school with an assistant and he does everything a “normal” child of his age does!

So what if he has some little quirks or suffers social anxiety?? So do I!

Then we have a Joey. Joey rushed into the world 10 weeks early, he was a poorly baby who struggled to thrive at first. But then he really took off and seemed like this bouncing happy perfect boy.

But deep down I knew something wasn’t right, he seemed to have sensory issues, he never slept, he didn’t move around how he should. But he was always smiling!

I first started expressing my concerns around his first birthday. I was told I was tired, I was worried that we would have another James, that I had just had Emily maybe it was post natal depression?? 

I felt like I was going crazy.

“He will walk in his own time” 

But I couldn’t shake this feeling.

Another year passed and finally Joey was walking, but only if he was wearing boots and if I took them off he would fall repeatedly.

Finally a referral was put through, if anything just to shut me up.

The appointment day came and as I walked into the room with the consultant she straightened up staring at him. She asked me to walk him back out and in again. Then she turned to me and said as bluntly as she could, “that gait is definitely not normal, get him up on the bed so I can see”

After a few minutes she explained he definitely had tone down one side, a weak core and beats of clonus in both feet. She referred us on for an urgent MRI.

James had had MRIs before so I knew what to expect. 

After the MRI the radiologist came up to check on Joey, i knew that wasn’t the norm.

He kept looking at us with sympathy, when he left I turned to Alex and said; “he saw something on that scan. I know he did.”

It wasn’t up to him to tell us though. Soon enough the phone call came from the consultant. Yes Joey had brain damage. I’ve never been so upset to learn I was right.

I didn’t want to be.

They called us in for more testing and found further issues. They were impressed that he had taught himself to walk even if he struggled.

I didn’t know what to do or say. I was used to autism, mental health problems that weren’t visible.

After a lot of therapy’s and various doctors getting involved we had plans set in place for Joey. 

Il never forget the first time we decided to take him out on a family day out in his wheelchair. 

We went to the science centre, while queuing up various children pointed, adults stared, one woman stepped over his wheelchair to bunk the queue. Once inside I also experienced an older child wheel Joey out of the way to get at a toy. 

It was tough. That evening I cried. A lot.

Then I sucked it up, and the next day I did what I do best and I gave Joey a firm talk about how his chair only makes him stronger, that he can be and do anything he wants.

I spent as much time as possible encouraging Joey to pursue who he is, and what he loves.

Joey LOVES the colour yellow and rainbows.

I’ve never been so happy to find FFNCO. Joey flicked through the website choosing a t shirt and a hat (the Joey bucket hat!!) 

It’s so so hard to buy boys clothing that is bright and bold like he loves but Freddie Fox do that for Joey. 

If I can do anything for him it’s make him comfortable in his own skin, and in his own clothes. 

The material is so thick and soft and Joey LOVES the rainbow thread, even James who owns a parklife Noah hoodie loves to put his hood up and study the amazing details when he is feeling overwhelmed. 

Thankyou so much from a special needs house to Clare for creating such an amazing sensory friendly caring brand.

You have made regular shoppers out of us :)