Posted in autism

Today you’ve struggled. 

Today has been hard. 

Today you’ve struggled. 

The holidays have finally gotten to you, week one you were good, week two you were good, week three you attacked three children. Week four you attacked one child and it all got too much. 

The lack of school, the change in routine, no school and for two weeks dad was home. Then dad goes to work he comes home and little by little we’ve changed upstairs. The spare room was changed about, you accepted it. Your room was changed you cried, you cried some more when you seen our room go the same as yours. You attempted to cover each roomin toys, tsum tsums, books, numbers, letters and toot toot cars. We’ve shouted at you, how many times we’ve picked everything up you’ve tipped them out once more in a different room. 

Last night you didn’t sleep very well, this morning you wasn’t happy waking up. We stopped you tipping the numbers and letters down the stairs before the electrician came. Instead you threw them and spread them everywhere. I shouted. You screamed, dad shouted. You were carried to the car kicking and screaming. 

This was all before 8am. 

Today everything finally got to you. 

I got you out, away from the noise, you enjoyed chips and nachos and came home a happier person. I knew something wasn’t right, I was waiting. You had the giggles, you were being silly. 

Those toot toots wouldn’t line up. You were getting angry, so off they went upstairs one by one iPad in hand. But no electric upstairs means no internet. You didn’t know that. So all these small little things broke you. 

I put pjs on you. I could say that was the start, but I know being on week four was the start. 

You tried getting out the front door, locked, you ran to the back locked, you climbed the washing machine tried pulling off the microwave, I shouted for your safety. You tried attacking the floor, had the toaster, attempted the front door again. I grabbed you kicking and screaming up the stairs. I needed the bed, I needed you safe not to hurt yourself. You grabbed everything, you kicked everything, how I didn’t drop you I don’t know. You dragged your bed away from the wall, you knocked over drawers, you kicked, you screamed and you came out with many random words, words that have meaning to you when you’re singing tonight they were all jumbled. I lay you down as safe as I could for ten minutes. It felt much longer for me I can’t imagine how long it felt for you. Your little body kicking, hitting, squirming. 

I persevered and tickled your arms, your back and wiped away tears. Some my own. 

I got your iPad you were too exhausted to do anything. 

An hour later I’m surprised you were still awake you came down you took crisps and went back to bed, iPad in hand. Not long after you are sleeping, snoring away with not a care in the world. 


Today you struggled. 

Tomorrow is a new day, it’s going to be hard, it’s going to be the same as today. This is the new routine for a few weeks. You’ll be fine. Well get through it! 

Posted in autism

Autism, life two years later.

I remember two years ago when I wrote this, we’ve come so far in two years in so many ways but still feels the same in others.  When I read back on last years update again as much as I know we’ve gone forward it still feels like where we were two years ago! 

Of course we still have the sleeping or lack of, we do start our day really early and end it much later than I would like! We still have the fussy eating and endless nappies to change! 

This last year I’ve really watched Z come on. From words, yes he can’t have that conversation with me yet, but with lots of new words hopefully in time he’ll be able to answer a yes and no question. His understanding is much better, he still won’t follow commands or get anything for me! 

In some places we’re closer to two years ago in respect to what he likes, he’s gone back to the toys he was lining up and watching what he used to watch on tv. ( currently back to Winnie the Pooh!) Maybe it’s something that will always happen, maybe he’ll always go back to things he knows and will find a different use for them. His toot toot cars used to be lined up, then he didn’t bother with them, they sing and he didn’t like that. Now they still get lined up but they also get put on a track, hopefully that’s a start of imaginative play. If he has an animal he’ll try to feed it telling it to ‘eat’. 

I’ve spent this last year watching him try to figure out where he is in the big world, and he’s not found that out yet he’s only four, has anyone? This big world that causes him stress, it confuses him. Things keep changing people eat and things are noisy. 

I’ve watched him grow, I’ve watched him learn how to be around other children in small spaces and not run away, I’ve watched him watching others and try to join in what ever game they were playing, I’ve watched him laugh, cry, and attack others. I’ve watched him iniatate conversation, and get people to do what he wants. I’ve watched him bond with teachers and laugh with them, possibly love them.  I’ve watched him attempt things like a Christmas concert and places I’d never thought he would, like rides at Drayton manor. I’ve watched my small little guy grow up autism hasn’t stopped this. 

Like I said I’ve watched him attack people, I’ve watched him struggle, I’ve watched him in pain and haven’t been able to do a thing about it, just add to that pain by pinning him down for bloods and x-rays. I’ve watched him cry and haven’t known the reason or been able to help. I’ve watched him struggle. Autism is the reason for this. 

In the last two years I in a person I think have changed, more so in the last year. I may never find out where we actually fit in, but I’m having fun looking.  Without autism we’d be on a completely different path, different people and a different outlook on life. There would be people who are big parts of my life right now not even seen, I wouldn’t even know about never mind laugh with. Autism is I’m guessing always going to be hard, I know I’m on a life long journey but with Z showing me the way I’m sure we’ll all be fine! I’m prepared for the laughing, the cries, the meltdowns and no sleep! 

I’m actually excited for school, too see them work with him with his words who knows where we’ll be next year? Maybe I’ll have the answers to my questions, maybe I won’t be changing nappies what ever happens I know I’ll always have my little guy, autism and all.

Posted in Parenting

Where do you fit in as a Sen parent? Do you ever fit in anywhere? 

Does it matter who you bother with? Will you ever totally fit in? 

 When Z was born you kind of loose your old friends and make new friends which is what everyone does. That’s fine you get over that straight away, of course you have new friends who shares the excitement of a new baby, the comparing starts even though they say not to, everyone compares their child to the ones they bother with. Mine don’t sleep through, mine still has three naps, mine does this etc. Then you get to the toddler stage.  As with many other Sen parents who I’m only really meeting now I know it’s quite common for these parents to feel some jealousy when their child doesn’t hit milestones. That could be sitting up, walking, talking and of course toilet training. We all worried, we all noticed that our children didn’t hit those milestones or in some cases hit them really early like Z with his puzzles but because you couldn’t see that in  everyday life it didn’t seem to matter. 

Then when you finally meet and engage with parents from school you really start to notice how different and unique each child with autism are.  I’d say way more unique than children who were at playgroup.  Children at playgroup are like sheep! They follow they interact with one another, they all seem to be very similar, our children are different. They all have very different needs. Ok we can say oh they are similar because they don’t talk, they all run but for each one of them you can really see them thinking before they do what they do. They’ll run for the chase, that’s a game, their just unsure of how to play that game with someone of their age. Come on, Mam gets it that it’s time to run! They can lead you to the door when they know it’s time to go, even if they seem to be having fun they know the time without any clocks! 

As it is now Z is making huge progress with his language and of course I’m proud of him. But it’s that difficult position when I know how I felt when the children at playgroup were doing things and mine wasn’t. Of course I know the other parents are just as excited as me it seems we all thrive on a new thing a child with autism is doing it’s like one is toilet trained, that gives me hope that maybe one day Z will be too. But being in that Sen school setting not each parent we talk to has a child with autism. So they must be feeling the same as me? What if their child talks do they feel guilty because the children are in the same class? Would I feel guilty if it turns out that Z’s best friend was in a wheelchair and Z can walk? We couldn’t have someone over to play who’s in a wheelchair as we have steps to the front door.  Yes I know I’m over thinking things but it’s not something that couldn’t  happen just because someone’s in a wheelchair don’t mean they can’t talk. So it could in theory being a Sen school actually happen. My house isn’t wheelchair friendly! 

Where do we as Sen parents stand? We don’t seem to belong anywhere. We’ve left the safety of the playgroups behind, but we’re all at a different level in school. What happens if Z learns to communicate well and mainstream is mentioned, then we wouldn’t belong there either as he would still have needs, be ‘different’ and of course be the new kid! At the moment I look at Z’s autism and see it as a disability, autism is the reason he’s not talking, has no awareness of danger and have no social skills. So what will happen if he does talk? Will he be too ‘disabled’ for ‘normal’ actives say swimming lessons, but seen as not disabled enough when trying to go through disability swim sessions if he could talk? 

Talking to other Sen parent bloggers I know I’m not alone. 

” Honestly, those baby and toddler classes were heart breaking because the worry back then was unreal. One of the hardest stages of this journey was when I just knew something wasn’t quite “right”, but family, friends, and health professionals tried to convince me otherwise”  This with permission is taken from Laura from Brody Me & GDD .  

Miriam from Faithmummy feels she don’t fit in anywhere. 

“I run a toddler group and while my children still went through breast feeding, teething, etc so many of the mums struggle to relate because my kids are disabled.                                                     We don’t fit in at church.                                  We don’t fit in at family events.                       We are even finding we are not typical.   Even for places like camhs as we have children with conflicting needs. I sometimes feel I don’t fit in here too.Yes f my son gets an award at school I feel so silly sharing it as I think everyone will be laughing at me.                                                  It is just terribly isolating!”

Kerry who blogs over at The Odd Sock Diary say 

 “I don’t fit in with the parents of typically developing children, because my son has Down’s Syndrome, and I don’t fit in with other SEND parents, not even with other parents whose kids also have DS, as my boy faces fewer challenges than many of them. ‘Too disabled’ for one group, ‘not disabled enough’ for the other — it’s like we’re ploughing our own furrow sometimes. But there are a few trusted people who understand.” 

But yet Charlie from Our altered life has the best advice! 

“I try to compete only with myself (it’s why I was always rubbish at sport in school and ALWAYS the last one chosen for group games!). It’s totally natural to look left & right and see others achieving or struggling but it does nothing to help us. It’s much easier said than done but we do fit in, where we are meant to and that’s with our own crew . Social media is incredible in so many ways and then dangerous in others because you don’t always see the full story. I’m thrilled for the parents of toddlers who can recite the alphabet backwards while mummy home bakes Victoria sponge cake that Mary berry would be proud to call her own but I’m winging it one day at a time. I think if people are honest, it’s all any of us are doing x ” 

So just because we’re all parents with of children with additional needs were all going though different things, were all lonely in one way of not fitting in. Well we do fit in somewhere and that’s social media! 

Posted in autism

Who or what makes a child? 

When I see the progress in Z I’m filled with a sense of accomplishment, not being big headed but a lot of people tell me I’m a good parent, but that’s not all down to me.

First off if I was a single parent I’d be way in over my head, and quite possibly a alcoholic! I don’t ask for help, I feel that being an ivf baby I wanted him there fore he’s my responsibility, the same way if I ever defrosted the others, again I’d want them why should I ask others to watch them?! Having the husband home I can just head out if that’s shopping or for coffee I can do it. I’m not dumping Z on anyone. He’s spending time with his dad! My sister don’t live local, so really the only family he knows are my parents and my nan. He knows his other nan but wouldn’t stay with her, she really wouldn’t know how to handle him. 

If it wasn’t for my parents I wouldn’t be able to go out with the husband if I needed too! So say weddings they’ll have Z at theirs so I’m not on a time limit to get back for the babysitter. If any thing happened to us I know he’s happy at my parents, he’s used to staying there. Maybe this is why I may need to get someone in for respite, just another person who he will trust incase me and my parents all need to be someplace the same time. What with dad then being in work where would Z go? 

They are a big part of Z’s life, I’m lucky he his a grandparents to make memories with the same as I did. 

There are people who’s helped Z become who he is at 4 years of age too. Other than my mates, J and E being big roles here everyone just accepts Z, accepts he’s different and that’s good. We have the Health visitor who provided us with portage, who showed Z how to get ready for school. How to sit and finish an activity. How to engage with another person. How to play.                                                                         We had the staff at crèche who helped him to learn what was going to become of his life for the next few years at school! Other children, sharing, learning how to play.                       We had his teachers that’s been with him the last two years, the ones that had taught him the skills he currently has, how to copy being a huge one.  How to stay safe in the pool, learn to tolerate people eating around him and to follow commands.  I’m sure he he does a lot more in school than I’ll ever know parents evening is only a ten minute session.                                  

Then we have other parents going through the same as myself. Who go out on day trips, who meet at soft play and just get it. Get how difficult it can be. Laugh at each other, hand the cocktails out when they are needed! 

These are the people who’s helped Z till now and there’ll be many more! More recently it’s been B and B, accompanying me on days out, making Z look easy and making me laugh.  Oh if you can’t laugh at someone else who’s laughing at themselves you need someone like B and B they will make you laugh! As wrong as it may sound B helps Z with boundaries when he’s attempting to attack him I’m screaming like a loony and B is just taken it all in his stride, there’s no crying and he goes back for more, which isn’t a good thing. But with them both being that little bit more rough and B being a year older than Z I don’t worry as much as I would if he went to attack E as she’s still a lot smaller than him. Like the other day when B wouldn’t move, so with mams permission I picked him up to put him in the car, Z had patiently waited , B was fuming with me moving him and tried attacking me mams shouting at him and before we know it Z is half out of the seat for B by the hair and I’m shouting at Z B has left me alone and me and Mam are laughing. Like I say if we don’t laugh can you imagine the looks we got that day? Or any day to be fair! It’s always easier to laugh it out with someone else that’s going through it. 

They do play nice too!

When you have a child with any additional needs it really is an eye opener, you join groups to chat to people then you realise how lucky you really are, in regards to things like his health. You learn that there’s so many things the professionals don’t tell you! They don’t tell you oh autism, they are likely to bolt, to smear, to never sleep, to never talk, to never listen, to be able to climb and escape anything,  to always want their own way and that’s some of them! Like I say I feel so lucky with Z, he’s quite easy going compared to others we bother with! In our little school group we have runners and climbers and smear loving ones! That’s when I think I’d be quitting, that I don’t think I could deal with! 

So just because I’m Z’s Mam I’m not the only one who’s made Z into the loving, clever number loving guy he is, that’s down to everyone who’s spent time with him and worked alongside him these last four years. 

Posted in autism

August. 

Well hello, can’t believe we’re into the eighth month already, as I say every year but it’s flying. In two months I’ll have a five year old. Wow. 

So week two of the holidays is over, heading into week three. All we’ve had is rain, rain and guess what more rain. What’s the point in planning anything when the rain just gets in the way. 

Dad has been off for two weeks and we’ve been no where really, can you really count the bay and for lunch a fun day out?We’ve  achieved nothing well other than two tidy bedrooms, can’t class Z’s as it’s covered in Tsum tsum and books that then had to be put back into a mess to take the flooring up. 

This week Z’s speech had seen a massive progress, we’ve had lots of new words, he’ll attempt to sing songs, baa baa black sheep, head shoulders and three in a bed! Actually quite cute. Today I’ve had open jelly, next we’ll work on please! His counting has come on and can understand most of the numbers, he’s counted independently to thirty and fifty I have heard him say numbers sixty plus! 

The progress he’s making is amazing, he’s already a different child to the one that finished school two weeks ago. I can’t wait to see how they work with him come September!