12

The fight for a school place!

We were told from early on that Dylan would need to attend a SEN (Special education needs) school. This means that we started the process to get a school for him at the earliest stage possible. Despite starting this process as early as possible it was still extremely stressful and I still can’t believe that this is still allowed to happen year after year.

We had a lady come out to the house to observe Dylan and ask questions, loads of reports that had to get sent off and heart wrenching forms to fill in.
After doing this all I was hoping that we would be told a date when we would know what school he was going to and that I could leave it up to the board to sort out without calling and hassling them. This was not the case at all.

As I’m sure you are aware for kids in mainstream they are told a date that everyone will find out what school they are attending, yes this can be stressful because sometimes you don’t get the school you wanted. I know how that can be as it happened with Amellia, so how come this can’t happen for SEN kids too?
I personally and I know many others feel that it is in fact more important for SEN kids to find out early on which school they are going too so that they can visit it many times before hand, drive the route to the school, get used to the feeling of the uniform, meet their teachers and many other things.

After many phone calls over the past few months to make sure they had got all the details they need and chasing up others who hadn’t passed on what they needed and having other professionals call to ask what was going on with the whole process it was starting to get very close to the end of term and the education board close whenever schools do so this sent me into a little bit of panic mode.

I called them and was put on hold for 30 mins and then they hung up so I called back and after another 30ish mins wait someone answered the phone and said “Special Education aren’t taking anymore calls today” then hung up again. Now, this was at 10:30am in the morning. So I decided to carry on with my day and try and forget it and call again tomorrow, though obviously it wasn’t really an easy day.
The next day they then told me a different number to call, who then told me another number to call and I must have been given about 6 different numbers and ended up going round and round in circles. While making all of these phone calls I was also running circles after my crazy pair and sorting them out too, eventually I got through to someone who said they would check on the computer .. they then told me they would call me back tomorrow.

She didn’t call me back and it was then the weekend.
They got back to me during the next week and offered me a place in a school I hadn’t even been to see as I was not advised to go and see it, so I told her this and she then tried to claim that the school that was my preference was over 20 miles away from my house. I told her this was not the case and she didn’t believe me after checking my address several times, so she said she would call me back and look it up properly. I decided to do a quick check to see and it was less than 4 miles from my house. When she called back she told me that it was still showing up as really far away, but that she could offer me a different school that I had mentioned I had seen and liked. I was over the moon, she told me I would get the paper work in the next few days and I couldn’t wait. When the paper work didn’t appear after many days I was starting to wonder what was going on. I decided instead of doing the whole going round in circles thing again I would phone the school and ask if his name was down and was he afternoon or morning.

I phoned the school just for reassurance and I ended up in floods of tears, I felt like a complete twat but they were so lovely, supportive and understanding on the phone which was amazing and I apologized a lot for crying. They voiced their opinions on the situation and said they would do all they could to help.

I phoned the education board and said I needed to talk to someone now, but they then told me they didn’t handle placements for nursery so I had to call someone else and after lots of being put on hold they told me they had already sent the letter to the school a good few days ago and on phoning the school back they said that this would not have been the case as they would have already received it. They then told me to call back Monday to see, so I had a whole weekend really fretting about what was going to happen on Monday.

I called the school on Monday and had a long chat with them about what had been happening that morning but they still had not received a letter so she phoned the education board to ask what was going on and why was this allowed to happen to parents as I wasn’t the only one and thankfully she has secured a place for Dylan.

I am over the moon, but can not believe all that we have been through these past few weeks and now my mind is all over the show with absolute delight and such a dump of emotions.

I don’t believe that this is allowed to happen year after year to so many parents who are already going through so much.

10

Child Developmental Clinic

It was my little mans CDC appointment the other day, and I really did not know what to expect from it. I had asked several people who had been to them before and everyone gave me different answers, so I’m going to tell you about my experience and how it all went!

The whole day before I had so much nervous energy I ended up sorting out my whole kitchen, cupboards and the lot!  hadn’t expected to get much sleep that night but I must have worn myself out running about like a lunatic cleaning/sorting/worrying etc as I actually managed a pretty decent sleep! Which was a great start as it gave me the energy I needed to be able to listen and concentrate on what was being said.

We were called from the waiting room and met a lovely lady who explained to us what was going to happen during the 90 minute appointment and that there was six other people there to observe him .. so seven people to watch my little 23 month old boy, that seems like an awful lot right! Well it seemed like even more when you walked into the room and saw them all staring at you..all happy, smiling and welcoming faces just very over whelming! My little man wasn’t sure at all what to think, but they are all very used to that and they had everything under there belt, the winning one for him was bubbles! He loves bubbles, what child doesn’t! They then all introduced themselves one by one; physio therapist, speech therapist, Occupational therapist and so forth! The questions then came as he was being observed by all the people there and as one by one they all went over to him and tried to get him to do whatever it was they wanted.. from walking up stairs to making eye contact.

There was so many questions asked I can hardly remember any of them or how I even answered, my partner told me he was impressed with how well I handled them all and answered them all… So I’m thinking they weren’t really the easiest of questions and that is why I have forgotten the majority of them, mixed in with my anxiety I’m surprised how I even remembered to breath through it all let alone answer all these questions thrown at me!

They then went around the room and gave there feedback to us about there findings; one thing that I was worried about was the muscles in his legs being a little short as he is constantly on his toes and not only just a little bit he goes fully up on his toes and occasionally will even walk on the other side of his toes! His muscles are fine though and we were advised to get him some heavy boots to try and encourage him to walk flat footed otherwise he will end up shortening the muscles in his legs. I am now on a hunt for some cute little boots in a lovely size 5! =]

The speech therapist told me to work on his eye contact and that we would have a few appointments with her shortly to help and give me more ideas on how to get him to give eye contact. Then the others mainly spoke about how to try and help him in the world around him, doing lots of messy play to try and encourage him to get used to different textures and how everything in the world around him is. To try tight clothing when I take him out to see if this helps him to feel settled as its like getting a big hug and close contact. I got lots of ideas of things to do with him to try and help him get used to different textures etc so that he will then hopefully start to eat a lot more things! Did you know that your hands are very closely linked to your mouth, so hopefully when he accepts different feelings on his hands he may start to in his mouth too!

It then came back round to the lady who was asking all the questions and listening to what everyone said; she looked at us very seriously and said that it was Autism.
Even though I had expected this my heart sank.. I just needed to get out of the room. Away from all the eyes watching and all the ears listening and waiting for my reply.
She then went on to tell us that she couldn’t refer us to the Autism Clinic until he was two and a half years old, so that we would have to come back in six months for this and that when we were back we would also discuss where would be best for him to go to school and to apply for schools too then as it was important to get on there lists from the start to make sure he got a place.

I asked a few more questions about how long till certain appointments etc.. then quickly left after thanking them all.

Even though I expected this outcome, it was still a huge shock. I am still coming to terms with it and I’m sure I will be for a very long time. I’m really not sure how to feel about it all.. all I know is that our life has changed forever.

I love him & I always will, no matter what.

WeeOhana xx

 

5

Hearing & Doubts..

I am never going to take either of my children to a hearing test again… though lets start from the start of a very eventful day.

The night before I hardly slept, so many thoughts running through my head. Worries,wonders,what ifs, hows and all those lovely thoughts us parents are subjected too. His appointment also wasn’t until the afternoon, so I filled the morning the best I could to keep myself and him busy. Why though when you want time to go fast it goes slower than you ever thought possible!  We started off having a little look in shops and picking something up for dinner then we decided to head to a forest park for a little walk!
When we pulled up to the park, he decided it was the perfect time to fall asleep so I enjoyed the peace. Peace from the outside I suppose though as I was having a million thoughts a minutes that ended up with a really sore head.. typical. When he woke up we went for a little walk around the forest, he thoroughly enjoyed himself and so did I.

Then it was on-wards to his appointment. How downhill it went from there, the waiting room was full. Every seat was taken and lots of children running about and shouting. Not something I particularly enjoy and neither does he, as soon as we went in he couldn’t handle it. Bright light, lots of people, noise, banging, and pushing. I set him on my lap and talked to him gently in his ear to try and keep him settled the best I could, unfortunately it was all just too much. (He has started to hit himself in the mouth with his hand when he is distressed) On the outside and to onlookers he seemed calm at the start until he started doing this and I was trying to stop him. He kept going and going and more people started to look and one child asked there mum why he was doing it, then he did it so hard he ended up making his mouth bleed, and not even just a little bit. I scooped him up and went on the search for the bathroom to clean him and myself up, so that when we went into the hearing test he would be calm and ready to do whatever they needed. As soon as I had him cleaned up I heard his name being called so off we went down the hallway to see how his hearing was.

It was going lovely, they started with him sitting on my knee and then they rang bells behind him and lots of other things making strange noises and he turned to the majority of them and stilled to others, it was all going so well! The lady told me she was satisfied with his hearing and that he definitely didn’t have any severe hearing problems but she wanted to do another test just to make sure.. little did I know this was more a form of torture.. I had to hold him still while she poked this thing into his ear and did a test. He did not like this one bit, neither did I. He screamed, cried, kicked, bit.. it was horrific. I calmed him down when we left got into the car and he was laughing and smiling, but I had to have a cry. I felt horrible, thought he would hate me .. but he had forgotten about it. Little does he know that she wants me to take him back in three months as she couldn’t do that test properly as he was screaming so loud.. I am not looking forward to that.

Great news is that he isn’t deaf.. though I can’t quite decide if it is great news..
I keep thinking that if he was deaf there are so many things that they can do to solve this, and ahh.. I’m really finding this all so difficult to handle. I suppose that is natural though right? I’m trying to keep my head above water, with a happy face ..I don’t know how swell I’m doing at that part.. its hard to keep yourself a float and everyone else as well.. its tough, its really tough. I must keep going.. on a positive note, we got his appointment for the child developmental team and it is on the 9th of November! So a lot sooner than I expected. which is great news! Less time to over think.. though panic because its so soon!
Answers, or at least some guidance and support is what I need right now. I need to know what I am doing with him is right, that I’m not a terrible mother and it isn’t all my fault.. though I’m not sure those feelings will ever budge..

WeeOhana xxx

18

The Start of a Long Journey

I’m not really sure what to write, or how to phrase what I write really, I just know that I need to write it somewhere as a place to get it out and as a sort of journal for what all is about to begin. Currently we are just starting a long journey with our handsome son to see what is going on with him. Our first step is Monday when he is getting seen by the audiologist.

I’ve had my worries about him for a while, but it took me  until a few months to convince myself that I wasn’t just being silly and there was something going on. I then decided to book a doctors appointment and went armed with a list of my worries and concerns about what was going on with him. I felt like a crazy mum going in with a list, but the doctor there knows me well, was very welcoming and told me he was glad I had a list so that I didn’t forget anything. So after him checking over my little monkeys ears/throat etc we discussed what I was worried about, he decided that we needed to get the health visitor over to see him asap and to get the ball rolling to sort things out with him. One thing he said that really got to me was that “he will either progress from here, or start to go backwards.”

After speaking to my doctor I was hoping to have a weight lifted off my shoulders and him telling me that I was just being silly, not to rush him and so forth but as you can tell, thats not how it went. I came home and got on the phone to the health visitor to get her to come and sort us out. I had to wait a week until she was available to come over, and I’m sure a lot of you reading this are parents and you know how long a week feels when you are in panic and upset about your child.. little did I know the waiting time of a week was the shortest I would endure in this process.

When she arrived she asked me what my worries and concerns were and we got to have a good chat as he was having a little nap. My worries were.. I suppose still are!

  • He doesn’t respond to his name, no matter how loud you shout it. Though hears things like doors creaking etc. At the start I was worried he was deaf, until I realized it was more a selective hearing thing. (this is getting checked on Monday though as they have to clear his hearing before checking everything else)
  • He is 21 months and doesn’t say a word, he babbles a bit, but no words or sounds that mean anything to him. He used to say dada/dog etc and knew what they meant.. now they have disappeared.
  • He tiptoe walks, a lot. Like right up nearly as high as he can get.
  • Extremely fussy with the foods he eats.. Doesn’t really like lumps or bumps in his food.
  • Doesn’t brings toys over to show me/his dad or his sister
  • Isn’t keen on his sister sitting beside him, when she does he will try to bite her/pull her hair.
  • Very little eye contact, or response to emotions from others.
  • Head banging against a wall/floor (very upsetting to experience =()

As I told her these she asked me had I been on google and were these all big worries or just little things.. when I told her that I used to work with children with additional needs she started to listen a little more, and then when he woke up and demonstrated to her several of these things she then said that I was right to have a list written. She then plowed on to serious mode.. She told me that she hoped she would come here and see him and tell me that she would come back and see him in a few more months and that he would grow out of the things he did. Unfortunately she told me this wasn’t the case and she wanted to write down reports etc and get them sent off that night to get him on the list to be seen by the child developmental team as soon as possible. . This was at the start of July.

I have had a lot of time to take it all in, think things over and over again, worry, get upset, get annoyed and most emotions possible really. This is a real tough thing to be going through and to be left in the dark with when the ball will start rolling. I have his audio on Monday so at least that is something but I am yet to have an appointment from the child developmental team. I am going to ask them when I am in on Monday if they have a clue about time frame.. I think the not knowing when it is all going to start is the hardest.. Especially when I know that when the ball has started rolling it wont be straight forward and that it will be a long time after many appointments to know what is going on.

As his mum, I just want to make it all ok everything be fine and one day for him to wake and to have came on leaps and bounds. Be talking and everything.. but as the days and weeks go past, I know that wont be anytime soon. It hurts a lot, but I have to keep my brave face on, keep smiling and positive for my family.

One thing I have found through all this though is that you constantly seem to be on the look out for things that are different/worrying/wrong etc.. So I have tried to concentrate on the positive and enjoy what makes him, him. The way when he laughs, its from deep within him, he has the most wonderful and infections laugh and when you have discovered what makes him laugh you can do it 1000 times over and he will find it just as funny as he did the first time! How when you hand him something new he will inspect it in great detail, turning it over and over again in his hands looking at all the tiny little details on it. That he empties out the whole box of hot wheels to find the one with the red roof and then will grab any other one to have one in each hand.. then will go to the table and play with them for ages without anything distracting.. unless his sister goes near him! 😛  That he will pick the tiny bits off the carpet and place them in my hand and will do this until he thinks they have all gone! When he climbs up beside his sister and for the brief moment will sit beside her and how excited and happy she gets by this, and how at the park he will find a bridge, and go back and forth across this bridge the whole time we spend there chuckling away to himself. He does a whole load more that makes me so proud and privileged to have him as my wonderful son. I love him, and I always will, no matter what the outcome is.

WeeOhana. xx

 

2

Magical babywearing moment <3 

Thirteen days on from getting my Connecta baby carrier and I am falling even more in love with it day by day! I have been carrying him more and more as I get used to putting it on easier, he appears to be getting more comfortable in it and I am starting to realise all that I can do with him in his little carrier! This morning he just wasn’t a happy bunny being left to sit by himself in his bumbo, his swinging chair or laying on the floor! I needed to get my little girl her breakfast sorted and then entertained! I knew he needed to go to sleep, I just didnt have the time to cuddle him to sleep! I put him in the connecta convinced that after ten minuites he would be unhappy and would want to be cuddled to sleep as he had never slept in it before! I thought though, ten minuites is better than nothing and I can at least get my little girls breakfast in a bowl and ready for her to eat! While she was eating I also got the dishes sorted all while my little man was looking about at everything that was happening! 

It was a very successful morning, we then went on to play with Kenectic Sand & Floam, my little man loved touching these and feeling the different textures all the time while being in his carrier! It meant that he was out of harms way, my three year old little girl got to play without mummy having to leave several times to cuddle/settle/fed her little brother!  

I then decided to be even more adventerous and try some arts & crafts with him being so well behaved! While I was doing this the most fantastic thing happened! He fell asleep while in his carrier! It was such a special moment because normally when he is getting tired and in it he gets adgitated so I have taken him out and cuddled him to sleep, but today I didn’t have too! I could carry on playing with my little girl while he peafullly slept and was close by so I didn’t have to keep going back and checking on him!

It probably sounds like the most ridiculous thing to many of you, but it was the most magical, meaningful and heart fulfilling thing that has happened since he was born! He found comfort in simply just being close to me, listening to my heart beat and my voice while I chatted with my little girl about what we were doing! I have been having a tough time with many things recently, but this.. It just made it all go away for a little while ❤

  

How dam adorable is he!

What special moments have happened to you guys that meant so much? It could be anything at all, I would just love to know! =] 

WeeOhana xx

0

Pregnancy, Christmas & fun!

I really can’t get any inspiration on what to blog about…or inspiration to do anything for that matter.. But hey! Suppose that’s what the final run of pregnancy is like! Feeling like a beached whale at the moment! Just feel so large and heavy! on he final count down now! Tomorrow I will be 35 weeks, so 5 weeks till my due date, but baby is measuring 2+ weeks bigger, so I am up again on the first of December for another scan! The consultant also said she would check me to see if my body is ready to go into labour and if I am give me the sweep and possibly break my waters too if I am! So that’s pretty exciting! Means baby will be measuring 39+ if he keeps growing at the rate he is, so least that means he will be a healthy weight! They are doing it early for me because of the pain from my spd and because he is measuring big, the lady seemed quite concerned with his size considering that I am normally quite a small girl, she said that I have small hips etc, so him being large will be why I am so sore! I’m super excited to think that in less then three weeks I may have my baby in my arms! How mad is that.. I am so not ready.. But I don’t think I will be now until he is born! We have everything that we need for him ready and waiting now! It’s just a mater of getting him here! 😀 writing about it is actually getting me a little bit excited! Recently though I have had a few bouts of braxton hicks.. Which are for anyone who is unaware, like practice contractions so to speak! So apparently that shows that my body is ready! It also makes the whole giving birth thing and the pain sink in… I’m buggered I think the hubby is in for a real shock! Could see he was finding it hard and he didn’t want to leave when I was having a few BH, which is ever so lovely! 🙂 made me feel a little bit special though I did make him go to work, as will need all the help after and don’t want to waste his precious days off! He is such a super star, was at my mum and dads house today as he had worked nights and came home to the house sparkling! I really don’t give him enough credit for all that he does, I do adore him so much 🙂

The other day me and my little one made chocolate croissants for us all to have as breakfast! It was actually lovely all just sitting down and having breakfast together and she had such a laugh making them.. We did cheat a bit, it was a pack type idea where you just added the chocolate and rolled them up! Though it was scrummy and lots of fun for her! She loves baking and we did used to do it quite a bit together, but obviously at the moment it is quite hard to do this by myself, without a little one running about! The last time we properly baked together she poured flour all over the kitchen floor and had a blast making little foot prints in it.. So I think I’ll leave baking with her again for when the little one is here and having a nap! Then if she does decide to pour flour everywhere we can have a bit of a laugh in it rather than me panicking at how to clear it up when I can’t really brush the kitchen floor at the moment!

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We are getting all excited about Christmas in our house at the moment! Mainly because of everywhere you go there is a Christmas tree, tinsel, Christmas decorations etc! Also it’s the first Christmas where my little angel understands (more or less) the whole Santa idea, presents, decorating and the likes! Today we went to a shopping centre to grab a few bits.. Every shop window she had to stop and excitedly jump up and down on the spot at the snowman, Santa, gingerbread man, lights or anything at all Christmassy! It did mean it took us a while to get to the bits we wanted to actually do, but it was so beautiful seeing how excited she got and how amazing it must be to be that small, young and innocent! It also though must feel like Christmas takes forever.. Because it is in the shops forever before Santa comes! It’s a bit depressing for me, I already have all her presents wrapped, and a few for baby brother so that she doesn’t ask why Santa didn’t come! Normally I am an Xmas eve/week wrapper and love wrapping them in front of a Christmas movie, with the fire on and a little drink! Obviously this year I couldn’t leave it to do that, just incase they decide they don’t want to induce me and baby decides to be very untimely and come on Christmas Eve or close! It also means that I won’t have to be worrying about wrapping when I have a tiny baby, or sitting on the floor etc.. Which those of us who have had babies know isn’t the comfiest of things to do 😉 all her things are wrapped and safe in a bag, so I can just say to anyone to grab them tv just incase I can’t! Which would be horrible, but I’ll deal with that when and if it happens!

We have our Christmas tree going up day all planned! 30th of November! 😀 mainly because If I do go in on the first and there like yeah, your having a baby tomorrow or whatever I don’t have to worry about that when we get home.. Also because I can’t wait and the little one is super excited! The next time hubby is off we are going to go up to the disney store and purchasing some new cute decorations, then depending on how I feel maybe hunt out a few other cute bits and pieces! On the note of Christmas decorations.. I got the cutest Mickey Mouse nut cracker the other day off Amazon! He is amazing.. Though I don’t think he would serve much purpose as a nut cracker.. So I’m glad I bought him as a decoration! 😀 He is going to be one of those decorations that you keep for years and bring out every year! We aren’t ones to have a colour coordinated Christmas tree, we just go for complete and utter random ones, and ones that mean things to us and so forth! we really need a new artificial Christmas tree, but going to have to wait till next year for that as obviously have a few more important things this year 😉
What do you think of Mickey Mouse then? I’m in love 😉
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I hope you have all been keeping well?
When will you be putting up your Christmas tree?
Oh and here’s my most recent paper cut! Not very Christmassy.. but I think its cute! What about you??
Weeohana xxx

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0

Blah,blah,blah

Even though I am in a great deal of pain, and my bump is somewhat massive and still growing, I just don’t seem to feel pregnant! I am finding it really strange mainly because of how this pregnancy has gone, hasn’t been smooth sailing at all like my first and has been constantly reminding me that I am pregnant. I mean, I know I’m going to have a baby, it just doesn’t feel real! its confusing to explain.. I’m sure your probably all reading this thinking, what is she going on about! I suppose the easiest way to explain it, is I know I’m having a baby, but it doesn’t feel like the baby will be here in less than two months!

Today to try and help myself realise that a baby will be in this house shortly, I built & made the cot up! Luckily my lovely mum came round to help me, because with my SPD I really couldn’t have managed to do it by myself while trying to contain a three year old too! It is very upsetting and makes me feel very weak and pathetic that I can’t do these simple tasks! I also think that is another reason why I don’t feel like the baby will be here soon, or at least am in denial about the baby being here so soon because I can’t do things to prepare the house and all that fun jazz! I must say though my mum and my family have been such a fantastic help through all this! I really do appreciate all they do for me! At the moment I am relying on my mum a great deal because my hubby works shifts, which sucks in these kind of situations. well actually it sucks full stop, but I can’t complain because when he is here, he is fantastic its just the trying to get him here and awake! My mum though really is my best friend, she is just so wonderful! She has been taking me wherever I need to/fancy going, taking my little one to and from play school and plenty of other things. I think without her help at the moment I would end up just staying in bed all day watching DVDS with my little girl eating rubbish all the time! Though now that I think of doing that, it actually sounds like a good plan! =D My sister and my dad have also been great, as they have taken my little one out on adventures and stopped her from being trapped inside. Taking her out also helps to waste her energy.. she is very energetic for a little one… she would run circles all day constantly while talking if you let her!

Anyway, I got distracted sorry! So we built the cot and got the bedding put on to it, it is such a cute little themem and I am even happier with it now it is on the cot! I loved it when we bought it.. obviously, or I wouldn’t have bought it, but now that it is on and all set up, it is so beautiful! Here is a little picture so that you guys can admire it too!

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isn’t the turtle just wonderful! I have the matching changing mat, towel, and all that kind of jazz that you need for a bay! 😛  Now I am just on the count down till the wardrobes and the rest arrive! Not long now, they are being delivered on Tuesday! Then I can get the mountain of clothes sorted and his room will start to look like a room, rather than a dumping ground for clothes and the likes!

I didn’t think my bump could get any bigger.. but every morning when I wake up it seems to be getting bigger and my clothes are getting smaller! I’m sure one of these days my tummy is literally going to explode! This morning actually my little girl said the most cutest thing ever, she cuddled into my bump and said “you are going to be the best baby brother, I can’t wait to change your nappy. I love you” How precious ❤ Though if she is interested in changing the nappies, she may work away.. I must admit that isn’t the bit I am most excited for!

Here is my 33+2 bump! I feel huge! =[ what do you think?

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This post has been very random and a bit, different? to my others.
So I hope you still enjoy this! Let me know what you think?

WeeOhana xx