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Sunday, February 5, 2023
Friday, February 3, 2023
2023 so far...
2023 has been a year of reflection for me already.
My Grandma passed away on New Year's Day, the day after J's 8th birthday. While being in her room on NYE it made me realise that I spend too much time on social media and made me reassess how I spend my time.
As I created the powerpoint presentation of photos to be played at her funeral service it made me want to organise and sort photos. Who needs 2000 screenshots!?
Then at a swimming lesson, J's swimming teacher brought up the idea of a blog again, which would someday turn into a book. Something POSITIVE about these amazing neurodivergent kids. She is so used to me crying happy tears at swimming lessons, it's the norm. Haha!
Then J had his first speech therapy session of the year and he's made huge gains there. He's at the lower end of average!
Then he had a session with Miss D from LL and is reading words without sounding out or hesitating!
He had a huge brain break over the school holidays. It allows him (and me!) some downtime. I cannot wait to see what this year brings. I love you JJO!
School journey. Prep till now (Grade 3)
Prep was a bit of a rude shock if I am honest.
That first report card was rough. We didn't know what to expect but it wasn't THAT. I also had the very unfortunate experience of meeting with a "guidance officer" (I say that very loosely) for what I understood to be discussing cognitive testing. Unbeknownst to me, this testing had already been completed. This was all in the process of obtaining some form of "impairment" funding to allow J to be supported well in class. J qualified for physical impairment, but as I was soon to learn, he didn't qualify for cognitive impairment, as he was "too smart". I wasn't sure if that was an insult or not. Then came the "All we can hope for it that your child will be an independent functioning member of society. He will never be college educated". Cue Mumma bear losing her shit. I know that this person will not be invited back to the school, which is a comfort. I would hate for another family to be subjected to the same insensitive remarks. So, always trust your gut and fight if it is called for. I have to hand it to the school, all the way through Prep to now, they have always been incredibly supportive and inclusive.
English has always been a struggle, however, with the assistance of extra-curricular therapies thanks to our NDIS funding, huge progress is being achieved.
Math's has been a bit hit and miss. J does take extra time to process things.
In Grade 1 J had an amazing male inclusion teacher who he adored. That was definitely a positive as well as his two teachers being young mothers themselves, so being very sensitive to J and his needs. By the end of the year J was just below "average" for Math's and English. Let's be honest too. English is dumb.
J adores being able to participate in before school soccer/football depending on the season. He loves joining in when it is any game with a ball. He loves to ride his bike and scooter and is currently saving up for a skateboard. (Give me strength!)
Grade 2 was wonderful with another gentle teacher who set J up with assistive technology. J struggles to write (He is a lefty) as his hand strength just isn't there, so a school iPad and keyboard were arranged. This allows J to submit his work in Microsoft Word and his teacher would edit it. A maximum of 2 or 3 I think, so as not to discourage J in his learning journey. Same grade for English but Math's has improved, which he maintained all year. And for the first time I was able to attend excursions for both my boys which made my Mumma heart very happy. He "passed" everything else and achieved an above average in Physical Education and Music, which he enjoys. His effort and behaviour are both very high with amazing comments on his little personality and attitude.
I have already touched base with his Grade 3 teacher, and I think this year is also going to be a resounding success. I am just beyond grateful that we have so many incredible people on J's team.
We were told that our unborn child may not walk or talk. He is walking, talking, running and jumping. He is also compassionate, cheeky, stubborn and kind. What more could we ask for? We just want you to be happy Master J!
I knew that when we were in that counselling room, while I was still pregnant with J, that we would be okay. Because I looked at Hubby and said, "I'm sorry" and he looked at me and said, "I love you". I just hope Hubby also realises how much I love him! You're a good egg, SJO!
NDIS... Boy, what a journey! Plus, our therapist overview
National Disability Insurance Scheme (NDIS)
What. A. Journey.
We began the submission process April 2018. With assistance in what terminology was required, and all that jazz.
Which frustrated me to no end. Anyone with a pair of eyes could see how much J needed help. His brain wasn't going to spontaneously grow a corpus callosum. His T8M is forever. The paperwork process is trying, emotional and disheartening.
It was deficit based. You have to talk SO negatively about your child. I despise the review process each year and have deliberately stopped reading the reports because it is awful.
So, to all other NDIS parents of neurodivergent/disabled/challenged kids - I see and feel your pain. I am sending you a tonne of love, patience and determination. Keep fighting!
We got the access request approval letter 09/07/2018. I cried my heart out opening that letter, I will never forget it. Happy tears and so much relief. Finally, we were going to be able to access quality therapy with consistence!
We have been through so many ECEI coordinators. It feels like each plan review we meet a new one and have to re-hash everything, again... From memory we were able to start accessing therapy in mid 2019, when J was in Preschool.
When J started Prep in 2020, with COVID also hitting - Whoa was that a "fun" challenge! The NDIS didn't know which way was up so ended up increasing our funding so much that there was so way we could use it all.
When we did our most recent review, I also submitted an excel spreadsheet with the therapy required, number of appointments required and dollar amount - So that there was a very clear document outlining everything.
We have had consistent Speech and Language pathology, Occupational Therapy, Occupational Therapy Assistant and Executive Functioning Therapy through LL. There literally are no words to describe my unwavering gratitude for each of the professionals that have assisted J in this journey. As well as the recommendations from other parents to employ these therapists. I have also found that employing people that work for themselves to be far better than employing through a company with many therapists, as the turnover rate was quite high. You'd finally see your child build a rapport and bond with someone, for them to leave. It was frustrating, to put it mildly. This is our personal experience though.
The benefits of swimming lessons!
Where to start when it comes to swimming lessons...
J started swimming lessons when he was a baby. 3 months old and falling asleep at the end of a lesson because he was tired and content. I met an awesome bunch of Mums too, who allowed me a safe place to be me. While going through the ups and downs of parenting a neurodivergent child.
We had to have a break when J kept having multiple ear infections, so bad that his little ear drum would burst and gross liquid would flow from his ear. 😬
Then along came J's little brother, L, and we had to stop as we couldn't afford it. Trying to work enough to pay a mortgage and have 2 children in childcare, it was too much. However, the owner Miss J, wouldn't accept that.
She knew how important swimming was, from a therapy perspective, for Master J. So, we were able to keep going at no charge. I'm not sure Miss J understands how grateful I am for that period. We kept therapy going and kept teaching the importance of pool safety.
As soon as we could stretch the budget again, we paid for our lessons and also enrolled L.
The progress, oh my goodness, the PROGRESS! The first time J "monkeyed" around the pool by himself (when previously I would manually place each of his hands, one at a time, to help him) - I bawled. Kept my sunglasses on and literally bawled my heart out.
When J first started floating on his back without screaming bloody murder. Huge deal!
When J first managed to use his core muscles and climb out of the pool by himself - Lots of cheering, clapping and tears of pure and unfiltered joy.
Seeing him swim a few strokes, then roll on to his back in order to catch his breath. AMAZING!
Diving into the pool fluently and not flopping in like a cannon ball - More cheering.
Seeing him do strokes, more confidently & swimming further. Seeing him in our neighbours pool with joy on his face and confidence in his movements. Just THE BEST.
Thank you, Miss J, for everything you have done for our family and for giving me the gentle push I needed to start blogging J's journey. I hope I can give parents some hope!
J & L, fight like brothers, but also have each other's backs.
Trisomy 8 Mosaicism
December 2015 we found out about J's T8M diagnosis. His percentage is 40% T8M and 60% normal.
Two very comprehensive websites to read through for more information are:
Jax's main symptoms/signs:
Intellectual disability
Broad nasal tip
Deep palmar & planter creases (hands and feet)
Hydronephrosis (Dilation of the renal pelvi - This presented when I was pregnant and went away as he grew)
Agenesis of the Corpus Callosum
High palate
Tall stature
From a young age, due to the ACC, we had J seeing a multi professional infant team at the Children's Hospital.
This consisted of individual Paediatrician appointments. Then multi professional infant team appointments with a Speech Pathologist, Physiotherapist and Occupational Therapist.
This was able to continue until J was 18 months old. Then I had to fight to get him seen at CDS (Child Development Services), this gap in services was beyond frustrating as a parent.
The main issues that presented themselves very early on were:
Speech delay
Gross motor and fine motor delays
During that gap in services, I was able to attend a speech program called the Hanen program which really helped me learn how best to engage with J and give him the opportunity to speak. The main thing I remember is OWL.
Observe. Wait. Listen.
Give your child a chance to talk. Don't jump in over the top of them, even though you're trying to help. I didn't realise how much I was jumping in until we were recorded, and I was able to watch that footage back. The progress we made during the 6-week program was phenomenal. This was in 2017 so J was almost 3.
We then had another gap in services where I ended up back at our GP and asked for a chronic health care plan. This allowed us to access subsidised speech therapy as this was J's most obvious challenge. He was able to access speech appointments whilst at childcare. I had applied for a NDIS (National Disability Insurance Scheme) plan for him, to allow us to access more consistent therapy as well as more options of therapy.
J has had swimming lessons since he was a baby with a short break due to recurrent ear infections. This has been incredibly helpful for him gross motor wise. The number of times I have cried happy tears at swimming lessons, I've lost count. His swimming teacher actually encouraged me to write this blog and gave me another gentle push in 2023 which is what I needed to get typing. So, thank you Miss J, Miss K, Miss E & Mr D. We love and appreciate you all SO MUCH!
Baby # 2 - LJO and the Trisomy 8 Mosaicism diagnosis
As Jax approached his first birthday we wondered if maybe it was time to look at having another child. However, we wanted to see if Jax's ACC was likely to happen again, before making that decision.
Jax had a full blood test done, this is when we discovered that Jax DID in fact has a chromosomal abnormality. The amniocentesis previously had not picked it up, because it is mosaic. Only in some cells of the body.
So, J also has Trisomy 8 Mosaicism/Mosaic Trisomy 8. So, in some cells of his body instead of having 2 copies of chromosome 8, he has 3. The T8M also caused his ACC and was the cause of the polyhydramnios. The chance of this happening again, was very low.
Luckily too, because that very same afternoon we got the T8M diagnosis we went on a two-night (kid-free) cruise and by the time we got off the boat we were pregnant!
A huge surprise because we were told that we could not fall pregnant naturally. Jax had been conceived with assistive reproductive technology, as I did not ovulate on my own. So, I was having to inject myself with hormones and then a trigger shot to force ovulation. Fun times!
It was meant to be because little brother, L, was born in August of 2016. My very next pap smear discovered cervical cancer and I ended up having a hysterectomy in 2018.
Pooh Pooh!
Getting this kid to do a poo, was a challenge from the get-go. Then it just got more and more difficult once we added the thickener.
We tried so many different things. Brown sugar in water, lactulose, Actilax, massage, warm baths & finally suppositories.
I ended up in ED again, literally begging for help. This poor kid was doing bowel movements only because I have shoved a suppository up there and the 💩's were HUGE. Causing him pain and me to feel awful. It got to a point where he wouldn't even react when I administered one which was a big concern on it's own. Poor kiddo.
We were told to try Pepti-Junior formula, as well as Osmolax. This didn't really help.
Then the Doctors thought he may have had a cow's milk protein intolerance, so we were told to try Elecare. These teeny tiny tins of formula cost an absolute fortune but thanks to J's diagnosis and subsequent hospital admission, he had a health care card which subsidised the cost and made it affordable to us. Phew!
We did have our fair share of run ins with medical professionals along the way though. One asking me if I had post-natal depression. My snippy reply was "No, I just want my kid to be able to 💩!" When she next checked his nappy, he did a wee on her. I was so proud of him! The thought still makes me smile today.
Fast forward to seeing a gastroenterologist and getting a rectal strip biopsy to rule out Hirschsprungs disease, which he thankfully didn't have. We introduced a daily dose of Osmolax and he has been fine ever since.
He basically toilet trained himself too. Which was a big win because I had a huge amount of anxiety about it.
J's entrance into the world!
New Years Eve 2014. At 7.00am I was woken with a popping feeling, which just so happened to be my water breaking.
I had been told by MFM that if my water broke at home, I had to get to the hospital fast. As there was a risk of cord prolapse due to having polyhydramnios. Polyhydramnios is too much amniotic fluid. The MFM team were concerned that there could be an issue with J's gastrointestinal tract so were planning on checking that as soon as he was born.
I walked into the hospital with a towel between my legs, so it was pretty bloody convincing that my water had definitely broken! 😂 Contractions started not long after we arrived to the hospital. The birth itself was probably the easiest part of the journey so far, because the emotional roller coaster up to that point was 💩.
I had an epidural and J entered the world at 10.20pm. He was taken away and his Apgar score was completed, as well as his ability to swallow which were all clear. Thank goodness!
We were in hospital for 4 days trying to learn the ropes with our firstborn. During that time, he was not feeding well and was borderline jaundiced. He would fall asleep at the boob and not attach at all. I was expressing to get my milk to come in and they let us go home while we were trying to top him up with formula feeds. He just wouldn't take them though.
After less than 24 hours at home, I lost it. Something didn't feel right. We went to our GP who confirmed that he was dehydrated. He had barely taken anything since we had been home. J was also jaundiced and totally exhausted. Two of my stitches from my episiotomy had also bust so I needed to return to the maternal assessment area. This was not the homecoming we had hoped for. Me going to one hospital and Hubby taking our newborn to another. I hate to think of how many still pregnant Mums I completely freaked out when I was in the maternal assessment area, without my newborn, bawling my eyes out. Then being wheeled over to the Childrens Hospital clutching bottles of expressed milk. Ah, memories. 🙈
A whole host of tests were ordered. J needed an IV, catheter, nasal gastric tube and a lumbar puncture. I will never forget Hubby going to get antibiotics for me, the Doctors telling me they were going to put the NG tube in so did I want to go make myself a cup of tea. I agreed because I didn't want to see my already distressed baby, even more distressed. I came back and J wasn't in his bed, he was gone. I honestly had the thought "Holy crap, I've already lost the baby. Hubby is going to kill me". Turns out the nurses had him in the nurses station, giving him lots of cuddles. It isn't often they'd get a baby that fresh in the ED so they were loving on him. Which, in hindsight, is hugely comforting.
He was put on powerful antibiotics while we waited for the bug to show itself. It turns out he had a urinary tract infection. He was also put on a light blanket for the jaundice. Whatever he didn't manage to take by bottle was given via the NG tube and we saw a huge improvement. By night 3 in the hospital, I lost the plot again, so Hubby stayed with J for 2 nights while I went home to get some sleep. Waking up though after that solid night's sleep had me looking like Dolly Parton. 🐄
I made the decision to stop expressing and go to formula, everyone was so supportive of this which I appreciated so very much. I was already beating myself up about it enough as it was. The very first 80mL bottle that he finished, I kept. I was so proud! After a week in the children's hospital, we attempted our homecoming again.
A few days later, I wasn't happy with his feeding though so we went to ED for some help. He sounded like he was drowning whenever he would drink. Not to mention that his mouth, being midline, was a struggle for him to "work out". They suggested thickener which helped, but then caused constipation. Which is a story for another time.
A little about Master JJO and the Agenesis of the Corpus Callosum diagnosis (ACC)
Starting is probably the most daunting part of this blogging journey... My name is Mel and I wanted to share our journey with our little superstar.
It's been 8 years since Master J was born and there have been lots of ups and downs during that time.
J's list of diagnoses went in this order: Agenesis of the Corpus Callosum (diagnosed in utero), Trisomy 8 Mosaicism just before he turned one and most recently Autism Spectrum Disorder - Level 2. So, to shorten all of those we have ACC, T8M & ASD2.
I was 20 weeks pregnant having my morphology scan when they noticed dilated lateral ventricles in his brain. At a 26 week scan they had grown so we were referred to the Maternal Fetal Medicine (MFM) department at the Hospital in the city. At 32 weeks we had a scan with there and our world was turned upside down.
The lateral ventricles were the same size as the 26-week scan, but they also noticed bub's corpus callosum was missing. As well as this, I had too much amniotic fluid which they thought could indicate a syndrome of some kind. We were given the most terrifying worst case scenarios. The one that still sticks out in my mind is "Your unborn child may not walk or talk". We had gone through assistive reproductive technology in order to fall pregnant, so this is the absolute last thing we were anticipating after what had already been a bumpy journey. We proceeded to have an MRI and an amniocentesis. The amniocentesis showed no chromosomal abnormalities and the MRI confirmed complete Agenesis of the Corpus Callosum. I ended up having 1.5 litres of amniotic fluid drained at 36 weeks because I was so uncomfortable and struggling to breathe, whilst sitting down at my desk job.
The Corpus Callosum is basically the mega communication highway between the left and right hemispheres of the brain. It is the largest bundles of nerves (200+ million) in the entire nervous system. Agenesis of the Corpus Callosum is a congenital (lifelong) brain abnormality. It has a huge spectrum of potential challenges. I truly believe that the prognosis depends on your child as well as early intervention.
As I start this blog, J is 8 years old and in Grade 3. We weren't given much in the way of hope or positivity when we got this first diagnosis, so my dream and goal is that reading through these blog posts gives other parents some hope.
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