Why I will no longer say I hate summer holidays…even though I do!


My husband and I were having cross words again. Extreme lack of sleep, hardly getting time to eat and a house that looks like a toy shop was burgled, added to constantly demanding children and it was no wonder we were fractious.

 
Summer holidays are so hard.

In fact part of me actually hates them. 

We need a break”

“I just want the house to be clean and some time alone!”

“I hate the summer holidays”

 
They heard us.

 
I just unwittingly and unfortunately stabbed my child in the heart with my words. 

 
Silence.

 
We made ourselves a coffee and regrouped. Stress affects everyone and this summer has been particular stressful for my family. My autistic son has really struggled to adapt to change but once he realised there was no school he assumed every single day would be simply about what he wanted. When that does not happen he screams for hours (he has complex needs and is non verbal so none of this is his fault)

 
I made the kids (yet another) snack and we all calmed down.

 
Then a little tender voice broke the silence:

 
Mum, it’s ok. I will go back to school and just stay there. Please don’t collect me at home time because I want you to be happy”

 
And then she cried. Deep sadness overtook her and I held her as the pain of my earlier careless words wrecked havoc in her mind and her heart.

 
I do hate the school holidays. I hate them even more now.

 
Parents, like all adults, need to be able to express their emotions. They get stressed and tired and we really are just humans at the end of the day.

 
But I don’t hate my children. In fact I love them and enjoy being with them more than anything else. 

 
What I hate about the holidays is this:
I hate that holiday companies are allowed to ridiculously inflate their prices in school holidays preventing so many from getting away.

I hate that family attractions cost so much that they are out of reach for many.

I hate that everyday tasks like shopping are so much more stressful because children want to do fun things and get bored at everyday mundanity.

I hate that my children see parts of me they shouldn’t because the constant 24/7 means I can’t rest or eat without them.

I hate how isolated and alone my family becomes due to having a child with complex needs.

 
But despite all this I will never ever say again in front of my child that I hate the summer holidays.

 
She does not need to hear this.

Her mental health is of far greater value than my need to vent. 

 
Children hear us. What are they hearing when we say we hate summer holidays? They are hearing we hate spending time with them. They hear they are not wanted and they are an inconvenience to mum and dad. They hear that they are the cause of stress. They hear that they are making their parents sad. They hear we hate them.

 
So from today onwards I may vent in adult only places such as social media, I may text privately a friend to moan, I may even write my stress down BUT I will no longer utter those words again when my child can hear.
I love her way too much for that.

 
She is the reason I will never say again publicly that I hate summer holidays, even though I do. 

 
Something to think about perhaps?

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The top ten summer stresses for special needs families


At first it is lovely to not have to cope with the school run or never ending packed lunches to make. It is a novelty to be able to put the TV on and not worry that the kids will be late or that they won’t eat breakfast. I am delighted to not have to wash and iron uniforms (who am I kidding I stopped ironing them by the end of September!) and find matching socks before 8:15am.

These are all great things to get a break from and I do not miss carrying my screaming child out to his taxi daily. But I would be lying if I said as a special needs mum that summer holidays were all wonderful. They are not. I find so many things stressful about having my disabled children with me all the time. I am not alone either. 

Here are the top ten summer stresses faced by so many special needs parents today:

1. Lack of changing facilities. 

I want to take my children to soft play, parks, swimming, museums and day trips. The problem is I have two children who still need nappies changed and both are well over the age of being able to access ‘baby change’ facilities. I need changing places toilets and these are so hard to find. For so many families this lack of toilets prevents them accessing places all year round but it is magnified during summer when children want to be out and about in lovely weather and families want to go out together making memories. None of my friends whose children have no special needs seem to even think about access to bathrooms and it upsets me that such a basic necessity for special needs families is so hard to find.

2. Lack of disabled trolleys in shops.

My son has profound autism and other complex needs. I can dream that one day he will walk around holding my hand helping me but it is a pipe dream. In reality he will smash things, scream, run away from me or wander out the store completely. I need to shop even when my children are not in school. Although online shopping is handy there are days I just need to be able to pick up bread and milk but something so simple is so difficult, and often impossible, if a store does not have a suitable disabled trolley for my son. I have lost count how many shops I have had to walk out before I bought anything because there are no basic facilities for my son. In 2017 this really should not be the case.

3. Lack of playing facilities in parks.


My local park is wonderful. It has a swing seat my son can use and a wheelchair accessible roundabout. Sadly this is NOT the norm and if my son is in his wheelchair I often find myself unable to even access parks due to cattle grids and tiny gates and that is before we even get to see if there is any equipment he is even able to use. Parks should be inclusive not just for the mainstream elite. The stress of not knowing your child can access something as simple as a swing in a play park is common for so many special needs families. 


4. Access

Yes even in 2017 there are shops, play centres, public buildings and restaurants that I still can not enter as my son is unable to climb stairs. Many shops also have displays so close together manoeuvring a wheelchair around the shop is impossible. I am denied access to places my son should be able to visit and I should be able to enter due to inadequate disabled access. The United Kingdom is far from disability friendly sadly.


5. Autism friendly hours that are not autism friendly times!

I am delighted that more and more places are putting on quiet hours and autism friendly times. However as wonderful and inclusive as this sounds they are often at times that are so difficult for my family to access. Early Sunday mornings for example are of no use to my family as we attend church and late at night is no use when I have young children who need routine. Instead it would be better to have a quiet day or autism friendly day once a week that enabled many more to access and enjoy places that otherwise exclude so many. 



6. Lack of respite.

Being nurse, therapist, attending appointments and getting very little sleep is draining. The majority of special needs families have no summer respite and little support through the long weeks of summer. This causes resentment for siblings who fall to the wayside and can put pressure on relationships and cause many carers to struggle with their mental health. For special needs families school offers necessary respite which they can not access all summer long. It makes for a very long summer indeed.

7. Inability to use household items due to sensory issues.

I dare you to use the hoover in my house over summer when the kids are home! Or the hairdryer or washing machine. These are items I use daily when my kids are at school but using them in summer causes the kids to scream and lash out in real pain. Parents of children with sensory processing disorder walk on egg shells all summer just trying to keep their house respectable without triggering continuous meltdowns.

8. Lack of sleep.

I can cope when my son does an ‘all nighter’ when he has school as I can rest or nap while he is out. When your child or children need 24 hour care and you get very little sleep that has to take its toll eventually. By week three of the holidays I have no idea of the day of the week or even my name as sleep deprivation kicks in big time. 

9. Lack of support.

Therapists vanish in the summer, as do health professionals and social workers! While I fully respect everyone needs a holiday it can be so disheartening and stressful as a parent to be left without any support all summer long. It is also detrimental to the children who require continuity and routine. Living with a non verbal frustrated 8 year old for seven weeks with no speech therapists is stressful! 

10. Isolation

Places are noisy, busy, expensive (carers allowance is a pittance!), and the general public can be ‘challenging’, making trips out of the house so difficult. Add to that the stress many families face trying to get their special needs child off of technology and even into a garden and you have some idea how stressful summer can be. For thousands of families this leads them to be isolated in their own home, forgotten and abandoned due to having a disabled child. 
With time, money and planning so many of these stressors could be overcome. A little respite, businesses and community groups installing changing places toilets and more shops purchasing firefly trolleys suitable for disabled children and life could be so much different. 

Have a think. What could you do to make summer easier for a family with a special needs child?



This article first appeared here

How a church changed summer for one special needs family

 

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One email.

That was all it took.

A lot of courage but just one email.

Last summer was so hard and I knew I could not face it again so I swallowed my pride and dropped my Church office a note.

‘Could anyone help me out?…’

They responded quickly. They responded lovingly. They reached out and changed my entire summer.

A few weeks before the schools broke up I was asked to meet with them. They had ideas and I had ideas and we discussed simple ways people, many we hardly knew, could help us through the challenges of seven weeks holiday with two complex needs children.

I suggested perhaps one meal a week that I didn’t have to cook or prepare. They went above and beyond and hand delivered up to three meals a week, some of them arriving still hot and ready to be served. Roast chicken, bolagnaise, curry, home made cakes, puddings, side dishes and sometimes even a starter too! That someone would take the time to buy ingredients, cook a meal and deliver it just for us is truly overwhelming. Every little pea, or grain of rice shared spoke of love in action.

It was suggested that people could sit with my children to allow my husband and myself an hour for a coffee. One hour during the holidays would have been amazing but once again they went one step further and my children looked forward with excitement to the two ‘best babysitters’ who came once a week for a couple of hours whatever the weather. Two hours out of their week but that time to me was like a wave of respite and sanctuary in a stormy ocean. It also had the added bonus that every Sunday my children ran to the two woman, desperate to see them again and connect with them even more. Every minute of time spent together sowing seeds of love that will change both my children and the precious ladies.

imageAnother couple invited me to bring the children to her house one day. Neither of us were to know it would be the hottest day of the summer and the children had a wonderful time in a paddling pool (well my son preferred a plastic crate!) and watering plants. Precious memories for me, the children, but also for the couple who also enjoyed a wonderful day shared with friends. My children were able to be themselves without imagepressure or stress and their needs almost disappeared as quickly as the water did from the paddling pool when my son decided to tip it out! One day; a million memories made.

I mentioned at the meeting that there was one day I could not even begin to face that summer. It was a day I had dreaded for months as I could see no practical solution in sight. I had a very important hospital appointment to attend in a hospital miles from home that would take hours. Due to the treatment I needed it was not possible for the children to attend. The appointment could not be cancelled and I had no idea how I was going to do it. In stepped the church once again with a plan. What did my children like doing? Where was their favourite place to go? What do they like eating? And so, with tears in my eyes, a plan was formed. My non verbal, severely autistic, lift loving son, would get to go on his favourite lift tour on a train to the city with three adults to support him. I would provide nappies, clothes, money and anything else and they would provide the manpower. Meanwhile my autistic, nervous, selective mute daughter would be looked after at home in the comfort of her own surroundings to keep her anxiety at bay. How do you ever replay people for giving you something like that? It would be no exaggeration to call them angels.

imageIn among this I received texts of encouragement, prayers, hugs and someone even delivered nappies that they saw advertised for free on social media and thought about me and my son immediately. In fact I felt so encouraged I began fundraising to build my children a sensory room and with the help of the church all the funds were raised within just four weeks. We are currently building that now.

This summer has been so different to any other. For the first time I have not felt isolated, forgotten or alone. My church changed summer for my special needs family and I can not thank them enough.

Matthew 25:40 (NIV) “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

We came to an understanding…

I had plans for this summer. My son also had plans. The difficulty was our plans were very different.

Isaac is six. He has autism and global delay. He has neurofibromatosis. He also has huge sensory issues, rigid thinking and a massive love of lifts and hand dryers. He has no spoken language.

So when school finished for seven and a half weeks his plans involved food (mostly mashed potato and gravy), lifts, hand dryers, food, hand dryers and more lifts…and maybe the occasional ride on a train.

I, on the other hand, wanted day trips, parks, picnics, garden play, road trips, time seeing family and shared adventures with him and his twin sister.

Someone had to give….

We came to an understanding and it went a bit like this:
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I took him to a park…and then we went to a local supermarket where he could see the hand dryers.

I got what I wanted. He got what he wanted.

We were both happy.

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I took him to soft play. He climbed about and even came back for a huge tight cuddle…which was his way of really saying ‘let’s go to the toilets now and see the wonderful hand dryers mum!’

So that is what we did.

He would play for a bit and then watch those dryers a bit more.

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I took him to pottery painting. He humoured me by putting on the apron (with support) and putting a tiny amount of paint on his model…and then he tore that apron right off and found the toilets to look for a hand dryer!

He has no problem communicating what he wants when it comes to his agenda…

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I took him took him on a train ride to a big city. His favourite place there was the lift at the train station! Nothing else mattered.

We traveled for an hour by train just to see a lift! But you have never seen a happier boy than Isaac was at that lift!

By now we were coming to an understanding.

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I decided to try to have a day without lifts or hand dryers…

I took him to the park again. This time all he wanted was the bushes at the side of the path! He felt them, watched them, heard them and even licked them. Well, what else did I think he would do at the play park?

This is life with Isaac. He had no idea others were staring at him.

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We had an invite to a family event at a local restaurant. Isaac made me so proud sitting at a large table and eating his meal (mostly using cutlery) and even having some pudding. But that was followed by an full 20 minutes in the toilets at the…well I think you probably know by now where he wanted to go to.

It wasn’t like I was hoping to speak to those relatives anyway…

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A charity invited us for a day trip to the safari park. Isaac showed not one second of interest in any animal. In fact he never even glanced at them.

But when he saw a sign for toilets he smiled, ran, and flapped with excitement.

I don’t expect he will go into veterinary care when he is older…

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I took him and his sister on a steam train ride. He did enjoy looking out the window at the passing scenery and he did enjoy eating in the cafe. But if he could talk I am pretty sure his highlight would have been that the toilets had his favourite hand dryers in…the ones with buttons to press.

It is what it is. He sees the world in a very different way. And sometimes just having him with me is a bonus.

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By the end I just decided to run with it. I only had to look at the excitement in his eyes and the happiness on his face to know that lifts and hand dryers are the most important things in his life. And if I want to get anything achieved these are the motivating factors to use.

I still would have preferred to have spent summer building sand castles, eating ice-cream, visiting castles and museums and time together as a family building memories. Hand dryers are loud, functional things that I would use only to…well dry my hands really! Lifts are convenient and quick ways to change levels…and that is when my interest ends.

But love takes you to places and has you do things in life you don’t expect.

And so I have spent an insubordinate amount of time this summer listening to hand dryers and watching lifts. And in his own way we have had fun. I had my day trips, parks, picnics and quality time with my son. And he had his fixations.

Life is about compromise. Love is amount accepting someone,however different to you they are, and not always wanting to change them. Making things work is about coming to an understanding.

I have had a lovely summer. Isaac has had a magical time. We just spent our quality time in places I never really imagined.

Even his twin sister seems to have come to an understanding…image

Ten tips for surviving the summer holidays with special needs children

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Three and a half weeks ago my children finished up at school and nursery for 7 weeks holiday. Although I love my children deeply I admit I was worried how we would cope with the pressure of looking after both children without any breaks day or night. Both my children have autism, one has neurofibromatosis and other complex needs, and they are both fully incontinent. One of them is non verbal and very delayed. They both have medical problems and need a high level of supervision and care.

So how do parents like me cope with being mum, entertainer, taxi driver, speech therapist, nurse, occupational therapist and support workers to our children for almost two months without a break?

I may not have completed the holidays yet but here are my top ten tips for survival when the kids are at home all the time:

1. Try and keep some sort of routine in place if at all possible.
I have been getting my children breakfast, dressing them and washing them in the same order as I would on a school day. Once they are fed, changed, dressed and clean I have a much better chance of them settling with toys, or a DVD or an electronic device for ten minutes while I get myself washed and dressed. An uninterrupted shower is a luxury but you would be amazed how you can multitask having a shower while also supervising a child brushing their teeth. Thankfully my two are still young enough to not worry about privacy too much. And I do have the advantage that one can’t tell anyone anyway 🙂

2. Don’t feel you have to go everywhere just because you have been invited or there is something special on.
My children have a habit of waking through the night or getting up at 4 o’clock to start the day. By midday they can be tired, grumpy and very unsociable so I try not to commit to many events and go with how the kids are. Busy noisy places are very difficult for both my children to cope with so I thank people for their invites and say we will come if we can. The stress of feeling we have to go is too much for me and then the children feed off that stress. They need time to transition from one place to another and ideally they need to know where we are going beforehand. My daughters anxiety means that just turning up somewhere we haven’t been before would have her very distressed and confused. I may not be at your event but we still love you and I am grateful you invited me.

3. Only do the essentials of the housework while the kids are at home.
Sometimes we have to move house or do repairs while the children are off but if it can wait, let it wait. Trying to make my house into a show room while my children are at home is fruitless and way too stressful. They need clean clothes, clean plates to eat off, a clean floor to play on and a bathroom that is tidy and useable. When they return to full time education I can clear out their toys, redecorate and give the garage a good clear out. Trying to do these with two children at home with high care needs is asking for a disaster. If you missed the five minutes in the morning when my living room was tidy then I apologise. I tidy up at night enough to find the sofa and floor and put my feet up before falling asleep. By 6 am the train track will be back on the floor again for another day of playing with Thomas. One day I will look back with fondness at these times even if at times the clutter of children seems t be screaming at me to get tidied away.

4. Kids appreciate the simple things.
Theme parks, soft play centres, farm parks and expensive garden toys are all wonderful. But someday the children just want to spend time with you. Only one of my children can kick a ball, but the other can lift it up and walk away with it. We have had so much fun in the garden and in local secure parks with a simple ball. Both my two would also happily play in local parks being pushed on the baby swings for hours and going for walks. My son would flap at the bushes all day if I let him. Few of us can afford to take the children to expensive places all summer so I have been balancing trips out with time at home. We have been blessed so far with wonderful weather so parks have become a firm favourite. We have also loved the fact that the sun has made soft play much more accessible as it means the centres indoors are so much quieter. Some centres have even put on special offers to attract customers during the warm weather. We also found out that children travel free by train locally so we have had some lovely train trips. It hasn’t been about the destination for the children but in fact the journey itself.

5. Make home fun.
My daughter had a nose bleed last week and we had loads of bedding to wash and change. Both my children found it hilarious to watch me put on a duvet cover. So I went with it and made it into a game. My son then found some towels drying on a bannister and dropped them down the stairs. For him it was such a fun game. There really is no point trying to explain how this makes more washing and could cause someone to have an accident. He has no understanding of all that. So I went with the moment and had great fun with some towels. Simple childhood fun. If the train tracks are out I am down on the floor playing and interacting with them. If you can’t beat them…join them!

6. Internet and evening shopping is the way forward.
I am blessed to have a husband and although during the day it often takes two of us just to meet the children’s needs, once asleep it only needs one person at home. So I rejoice in 24 hour supermarkets and online deliveries. Trying to drag two 5 year olds around a supermarket is worse than pulling teeth. And sadly food won’t just appear in my kitchen. So we have adapted to work around it. It may not be our ideal but it is just for the holidays. I never thought before I had children that I would say a supermarket at 10pm was a luxurious break. Believe me, during the holidays it is!

7. Choose your battles.
I do this all year round but more so in the summer. My son will only wear his school jumper so why fight. The days are long enough and the nights too short for me to battle needlessly. If my daughter wants a chocolate spread sandwich for breakfast I rejoice she is eating. If it means I can cook a dinner then they can have some time on electronic devices or some TV. Seven weeks of non stop battles would drive us all crazy.

8. Take help and let your children go to friends houses.
If you have other children in addition to your special needs child and they are old enough to do so, let them have some independence. Children, like adults need social interaction. There is nothing wrong in letting friends have your kids for a short while or letting a family member take one out for the day. The holidays are long so take respite when you can. I fought hard to get my son a few days in a play club for children with additional needs. He needed the break and so did we. I missed him dearly when he was gone but we all benefitted from a few hours apart. If someone can give you a night away from the kids don’t let them change their minds. If you have a partner try and take turns if possible. If you are offered care packages, kids clubs or such like use them as much as you can. You are not a bad parent for needing to be without your children. I still struggle with this but I am slowly getting there.

9. Never be ashamed or embarrassed about taking your children out.
My skin is getting thicker this holiday. I hear comments made about my children all the time, from adults and from other children. The more we are out in public and the more other people are out the more obvious it is how different my children are. It breaks my heart how isolated parents of special needs children feel, especially during the summer months. They feel they can not invite other children around to play, or feel trapped in the house because of their child’s needs or feel excluded. My children have as much right to play as other children. Whatever my children’s difficulties they are still children who want to run around a park, be pushed in swings or go on trains. This summer I have taken them more places than ever before even though their difficulties are more obvious. They need to experience more in life and the world needs to see more children like mine to break down ignorance. Yes, people will be cruel but smile, laugh and perhaps pass ancard explaining your child’s condition. They might not change their views but you would be amazed how much more love there is out there than hate.

10. Keep doing what works.
My son is addicted to you tube videos of life doors opening and closing. If it keeps him occupied and happy then I am happy for him to have some time watching them. He uses photographs from the iPad to communicate his needs in a similar way to how he uses photographs at school. If it works in school then I am keeping that up at home. It keeps things consistent and it allows me to know what he wants, at least some of the time. Likewise we are using the ‘first/then’ strategy to get him to do things he finds more challenging. First shoes on then out in the garden is a good example. For my daughter we found allowing her to eat away from her brother (whose table manners would put anyone off eating) has helped her eating. Likewise at times we use TV and dvd’s to allow us to put a washing on or cook a meal. If it works for you, do it!

Seven weeks is a long time to live off very little sleep, entertain two children and meet their needs at the same time. But half way through we are surviving and having fun doing the strangest of things, like changing beds and tipping out water. It’s about survival. It’s about keeping your sanity. But it is also about enjoying your children whatever their difficulties and challenges. I would love to hear your top tips for surviving the holidays with your special children too.

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What holidays??

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This afternoon my children start the long summer break from education. My daughter will leave her nursery years behind and begin her formal education in August and my son will have completed his first year at school and will say goodbye to his teacher for the last time as she moves to another school. Except, unlike most children, neither of them have any idea what is going on.

For ten months Isaac’s life has been consistent. He has spent 6 hours a day at school wearing his beloved red jumper and being with the same four other children and staff. He has grasped the routine of swimming, sensory room visits, school dinners and outside playtime. He has become accustomed to going on a taxi journey every morning. He has no concept of holidays at all so seven weeks without this consistency and routine will really confuse him. He will still insist on wearing his red school jumper, because that is what he always does.

He might be on holiday from school but he won’t get a holiday from his autism, or his learning difficulties, or his neurofibromatosis, or his developmental delay. And we won’t get a holiday from them either.

By the time he has adjusted to any new routine of being at home, going trips out, or eating lunch at home, it will be time to start preparing him for his return to school.

While his teacher, speech therapist, support workers, and even his respite carers all get a summer break, we, his parents, have to become all of the above and more in order to keep his development on track and continue to encourage his communication. Except, unlike the professions, we don’t get a full nights sleep, or a wage, or have access to wonderful resources. We get to do it without training, support or a break. We do it out of love.

For three years now all Naomi has known is nursery life. We have read books about school, she has had a few visits, she has seen photos of what her brother has done at school, and we have her new uniform and school bag ready. But still she asked yesterday morning what would she do when she no longer goes to nursery! Because until the reality of starting school happens she can not ‘imagine’ herself doing anything different. Like all 5 year olds she lives in the moment. Seven weeks away is like years away to her. As she hears all the staff saying goodbye, as she hands them presents to say thanks, as she empties out her tray of all her art work and letters, she still hasn’t fully understood that she won’t be back there again. As adults it can be hard to think what any new routine will look like and it can take time to adapt to changes. It will seem strange for me not to hang her coat up on the peg we have used for years now, to put her slippers in her bag for the last time or to drive out the car park knowing I won’t be there again. I find it hard to imagine my tiny five-year old will be wearing a shirt and tie or school pinafore in just a few months time. This change is big for me, so it is huge for my daughter.

So we say goodby to her key worker, her learning support teacher, her speech therapist, her assistant Head and Head teacher. I look at their faces and realise just how many meetings we have attended together over the years, how many times we have discussed my daughters difficulties, how many strategies we have worked on together and how many forms we have all filled in. They now get a holiday from all this. And while we may get a break from meetings and discussions with all these professions, and many others beside, we will still have to work on communication strategies, self help skills, independence, gross motor development and toilet training throughout the summer. Once again we will be working on all these without training, support, sleep or access to the resources they have.

Naomi’s challenges won’t disappear for the summer. In actual fact they may become more pronounced as she struggles with the lack of structure, becomes more social isolated due to not being around her peers and becomes even more attached to me and therefore more anxious when she is apart from me. While she will be delighted to not be forced into social situations or have to join in with others, seven weeks of being allowed to play on her own, being restricted by the needs of her brother, never being away from me and not being challenged in her communication with others will have a big effect on her confidence socially and in her general development.

While I will do my utmost to keep my children entertained, stimulated and happy throughout the summer I also need to keep working on their communication and social skills and their physical and mental development. And we still have hospital and clinic visits throughout as well. Except now we have to take two children along to them all.

I know all the professional who have worked with my children this year deserve a break. I know it is good for my children to have a rest from formal education too. But while they all begin that break at 1pm today the batons gets passed to me and my husband.

Seven weeks of no speech therapy support; no breaks while the children are at school and nursery to get on with paperwork, housework or shopping; no respite; no school meals; no access to the support and resources his school has to offer; and no extra funding to provide any extra support the children need.

Holidays? What holidays??

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