Alfie Bears Story…..

A lot of my blogs, well nearly all my blogs are about Junior. I thought it was about time I blogged about Alfie Bear and a new journey we about to take……

When Alfie Bear entered the world, he did so extremely quickly. The Midwife told me I was only 4cm and to stop been silly I didn’t need to push. I had hours to go.A trainee midwife came in to check on me, and to have a chat, I told her I needed to push. The midwife and my Husband helped to take my trousers off and then The midwife litrally caught him. It was all so quick.
Alfie was perfect though and had no issues, apart from he was very jaundice and couldn’t regulate his temperature. He struggled to feed and found it difficult to suck. He didn’t like opening his eyes.We were still allowed home after 6 hours of having him though. 

Alfie cried all the time. He cried when you held him. Cried when you put him down. He was always sick and had the most horrific diarreah. He struggled to feed and didnt have a natural latch. The longest he ever slept for was 2 hours and that was rare. He was hard work. Especially when I had a 20 month old to look after too. The doctors always told me I was just a overprotective Mum. After all I was just overcoming pnd. It’s probably Colic they said. 

Alfie never developed like an average child. Attending a second hearing test appointment at 6 months, the paediatrician asked me to sit Alfie on the chair. At this point Alfie couldn’t hold his head up, sit or roll over. He never responded to sight, sound or had reflexes. This was the start of a very long journey.And lots of input from lots of professionals. 

We had meetings, therapy, and lots of hard work. Alfie got given a special nursery place funded for with his own trained 1:1. We got an unofficial diagnosis of Dyspraxia  (apparently they can’t diagnose under age 5) 

Alfie continued to be sick and have very bad nappies. He continued to cry all the time. After tests, it was confirmed Alfie had Cows Milk Protein Allergy. Things steadily improved with his nappies and sickness and crying. He no longer held his knees up all the time and began stretching out. He has also now developed a soya allergy and he is still under the dietician to see if there’s anything else. Thankfully the caeliacs test came back negative. 

Alfie held his head up at 9 months of age, rolled over, and sat up at 10 months. Alfie has always choked on his food, and as a Baby constantly choked on his milk. Alfie still overfills his mouth and doesn’t chew much, so needs constant supervision, so he doesn’t choke. Alfie couldn’t speak until he was around 3 and a half. We have and are working so hard with him on his development.

Alfie’s still below his age group, which he more than likely will always be. He loves character clothing and loves nothing more than playing with his woody and buzz or his dragons, or whatever his fave thing of the month is. 

I’m ashamed to say I used to try and push him to like things society says he should, try and make him a little more like everyone else. I’ve learnt something though. Alfie is just Alfie and as long as he is happy and healthy then so am I. 

We have an appointment next weekwith the learning disability service, as Alfie still cant spell simple one syllable words. What ever the outcome from the LDS team, he will always be my kind, loving, cuddly caring little boy πŸ’™

Pregnancy Emotions and PND.

I’m an emotional kind of person at the best of times.

Pregnancy just intensifies it a million times.

Some of my emotions I wish I could tame.

The crushing jealousy and insecurity.

The hatred for my changing body. Except my growing boobs. I love having boobs.

The extreme highs of excitement and the unknown. The challenge of a new baby to add to our brood.

The overwhelming love for my little family.

The worry of how the fuck I’m gonna cope with four wild ones.

Will my PND return?……

You see back when I was 19, and I had given birth to Junior. I had the most terrible time with Postnatal depression.

I always thought PND was the same. You cried, you thought you’re baby hated you. You couldn’t form a bond with them. You were unhappy the majority of the time.

My PND was the opposite extreme.

I was happy, extremely happy all the time. I lived on cloud 9. Or that’s how I came across. I was battling demons in my head.

I strove to make everyone happy. I was super mum. I hardly slept. I cleaned. I mean really cleaned. I couldn’t have any germs infect my precious new baby. I might lose him.

I cooked meals from scratch. Baked bread. Baked treats for people who visited. As long as no one went near my baby, all was ok. I was scared to lose him.

I also remember the extreme paranoia. The panic that someone was trying to take away my baby. The panic that someone was watching us. The panic that someone had hacked into the baby monitors. So I didn’t use them. What happens if someone took him?

When Junior went to bed, I sat next to him. Even though he slept through the night from 2 days old. I needed to be with him all the time. I needed to protect him. I thought he was all I had.

The worry I wasn’t a good enough Wife (this thought never came often) Β I wasn’t paying any attention to Davie. My whole world was Junior, and I couldn’t see past that. I was in a bubble, My own little bubble and couldn’t see through it. The worst thing is I never saw and still can’t pinpoint when our marriage changed. When I pushed my Husband so far away, I very nearly lost him. I often think of this time in my life and try and see it all from Davies point of view. I’d changed us. I was a completely different person. I’d already lost my sanity, and all my friends. I was alone, that’s what I wanted after All. All i cared about was protecting my precious little bundle. I was so wrapped up in myself, I couldn’t see what was actually going on around me. I was blind. I was selfish.

Davie made me seek help. I hated him for it. Really hated him. There was nothing wrong with me!. I loved my Baby. My baby loved and needed me. How could something be wrong with me?

Only when speaking with the doctor did I realise my thoughts weren’t good or rational. Looking around 24/7 and seeing the dangers. Playing the worst case scenario through my head. The cars mounting the pavement and crushing the pram. A bus toppling over and bursting into flames. A stranger running past and grabbing my baby from me. Me dropping Junior down the stairs. Him choking. I’m sure you get the picture. It wasn’t good for anyone.

Medication and therapy helped. Slowly the fogged thinned out, and life became more real. Then I had to fight to keep my Husband.

I hate this time of my life. I hate reliving it. I’m so scared of the future, after baby’s born. I know I will recognise the signs. My midwife tells me so. I’m still the helicopter mum, overprotective and wanting them to be within my sight at all times. Most people don’t understand this. I’m trying really trying to loosen the apron strings. Not too much but enough to play out and play on the park without any interference from me. The PND never resurfaced with my other two Cubs, and I’m really hoping it doesn’t resurface this time. If it does I’m ready!

The Diagnosis

Sorry we’ve not blogged in a while. Life has certainly been hectic and has got in the way of my outlet.

4 years of fighting. 4 years of saying I cannot Parent my child properly. 4 years of complete chaos. 4 years of my child hitting me, throwing things at me and yelling abuse. 10 years of feeling like a failing parent.

We have tried. Like really tried, every parenting method going. We have tried every approach.

To be greeted by the Paediatrician at our latest appointment, with a beaming smile and the encouraging words “We have some answers today” was amazing. I cannot even begin to describe the relief I felt at that moment.

Junior has been diagnosed with a severe form of Hyperactive, impulsive ADHD. The Paediatrician thinks there may be something else underlying too, but would like to deal with the ADHD first.

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I’ve always been against medicating my Cub but after a very lengthy discussion we are starting on a small dose.

The relief i feel that I’m not just a shit Mum is incredible. The feeling that my Son has a mental illness/disability is crushing. My side of the Family have a lot of mental illness and I have seen first hand the incredible struggles and the damage that can happen.

We have a long way to go. A huge way to go. This is only the very beginning of our already long journey.

We are hoping to see an improvement in Juniors behaviour soon. He’s back to needing to be restrained again. We still have more bad days but hopefully, with the help of his medication he will start having more good days, and Oh boy I can’t wait for them.

We also got another diagnosis regarding his seizure, a few appointments ago. Junior doesn’t have Epilepsy, he has Reflex Vasovagal Synacope. He could have another seizure any time. We haven’t sussed out the trigger yet. 

We just have to take one day at a time.
Until then we have the love and support to get through this journey and come out stronger. πŸ’™
 

 

I am the Mum….

I am the Mum you see out and about.

The Mum who looks young.

The Mum who has three children.

The Mum who looks like she has no control over her boys. Β The Boys who you may hear before you see, the boys who cant keep still. The boys who talk at a high volume.

The Mum you judge.

The one who you stop and stare at, and feel the need to take a moment out of your day to make a comment on how i “need to control my children” or how “disgusting their behaviour is” or “is there any need for the level of noise they produce”.

If my Boys had a physical disability, would you be more understanding? Would you give me a sympathetic look, and walk on by?

Yes you would. How do i know that?

Because when Alfie was in a Maclaren Major pram having a meltdown. I didnt get judgemental stares and comments.

When Junior has his ear defenders on, and is stood twiddling his twiddle toy. I dont get as many judgemental stares and comments.

Can you not see that during a meltdown in the middle of a Supermarket, when im on the verge of tears, getting punched, kicked and swore at by my Son, that maybe he cant deal with the situation. Hes not just a naughty child. Your stares and comments dont help. Yes its human nature to stare, but please dont stop and stare. Please keep your comments to yourself.

You may think im not disaplining my children.

Truth is, during a meltdown. I cant reason with them. During a meltdown theres not much i can do, but try and remove them from the situation, reassure them and wait for it to pass. My Boys are getting big now at ages 10 and 8 its getting harder and harder to remove them from situations. Please be patient. Please dont judge. Please just walk on by.

Truth is when you do judge, it has a massive impact on me. Yes me. The boys dont care what you think. Not in a bad way. They just dont care. I do care. Your not only critising me as a person and a Mum. Your critising my children. You are judging them. That is what i find hard. Your making an impression of my children, before you know them.

Most of all.

I am the Mum who will defend her children. I am the Mum who is learning not to react to your comments, because its all due to ignorance. Lack of knowledge.

I am the Mum who loves her children no matter what………

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The EEG

I havent posted in a while. I have a lot to get my head around. I will forever be grateful for the amount of support and well wishes i have recieved through Instagram and the blogging world.

So Junior had his EEG.

We had lots of questions to answer again. Most of them ones we had already been asked.

We explained we think Junior had another seizure which we described in detail and also the two absenses we think he may of had. I also explained, that i feel im going crazy, that i may be looking at something which is not really there, or reading to much in to it.

Junior did really well and tolarated the Nurse putting all the wires on his head. He followed instructions well, open and close your eyes, keep them close, open them, blow this windmill, look at flashing light. He kept as still as he could. I didnt notice anything unusual during the test apart from his leg twitching a lot during the blowing exercise, again i dont know if im looking into it too much.

Im so glad we took advice from a fellow blogger and took a hat, his hair was a mess! And Junior has a need for perfect hair! not a good mix.

The test didnt take that long overall.

We took Junior for a walk around York, had a Mcdonalds and a trip to Lush to choose a bathbomb for a relaxing bath when he got home. He settled on a little butterbear.

We also have managed to get a sedative for Juniors MRI which is due soon. What a carry on that was. The Dr originally didnt want to prescribe one, until he took a proper look at Juniors notes and must of realised, he wont keep still.

This journey in equal measures is going too quick, but also at the same time its going too slow. I really want answers, but equally im scared of the answers. Junior will still be Junior, i just worry about his future.

“Your Son definatly has a disorder”

IMG_20161011_175308.jpgHearing them words, even when you think you are expecting them, knock the wind out of you.

So many feelings.

Elated, a proffesional sees what i see, im not going crazy. Im not a bad Mum after all. We are finally going to get some answers. An officially diagnosis. We will get help.

Sad, because what does the future hold? Junior is upset with me. This appointment was the first time, ive spoken openly in front of him.

Confused, we have always been told that Junior more than likely has ADHD and Asperger. The paediatrition isnt sure, although he thinks there may be some ASD there. Junior doesnt tick every box! I was only just coming to terms with ADHD and Aspergers. Now we are back to square one. Comfused, what will happen next?

Everything is coming all at once. So many tests. Millions of repetitive questions on family history. So many unanswered questions, are they trying to find blame? Point fingers? Trying to figure out if im just a bad parent? Theres too many appointments. I feel trapped in a whirlwind.

I can only imagine how Junior might be feeling. All i can do is answer his million and one questions.

I have never felt so nervous in my life, we are awaiting so many answers. We have so many questions.

I have to figure out how to explain it all to Junior.

First things first though, we will hopefully know by the beginning of November if Junior has Epilepsy or not.

This is one long journey.

We can finally see a light. Im not sure if im ready for the answers yet though…..

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Just a Mama wanting answers…

IMG_20161002_175757.jpgi feel im lost in a fog. Everythings hazy.

It could be the lack of sleep.

Since Junior had his seizure, and speaking to the Epilepsy Consultant, im so scared that Juniors night time jerking and twitching, is actually seizures.

In my last post i wrote about how quick everything was going, it was a whirlwind. Now it seems to be the complete opposite. It feels times slowly ticking by, almost stopping.

Im impatient you see. I want answers. Google, and YouTube arent giving me the answers i want.

I find myself studying Junior all the time, every twitch or jerk he does, asking if hes ok. He goes quiet for a minute, im shouting his name, for him to respond. I feel like im going crazy. Every phonecall while hes at School or im at Work, my heart sinks.

Im obsessively watching the small clips of Junior i have managed to film so far. Looking for clues that its all in my head. That its just normal sleep twitches and jerks.

Deep down though i think i know the answer to my own questions.

It breaks my heart. Im holding out hope it was a one off, until he does have the MRI and EEG. Until the consultant has viewed the footage. Six weeks feels like a Millenium away. Lightyears. I feel like im going crazy.

Ive only just started to come to terms, even grieved possibly, with the fact that Junior has Aspergers and ADHD, maybe even SPD. Now we have Epilepsy thrown into the mix. I have only explained the Epilepsy to Junior. I dont know if im just been selfish. Over thinking and worrying too much. Isnt that a Mothers job though.Maybe i need to take a step back. Stop researching. Take a leaf out of Juniors book and just carry on with life. One day at a time.Wait until we get appointments and results, and cross that bridge when we get to it.

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