It was a busy summer the year 2014! we got a massive 12ft pool in the garden and loads of toys, and had loads of garden parties with good friends and family. Lolly loved the water. I mentioned it before about her wanting to go in water at any opportunity. Shhhh but sometimes when I’m tidying up upstairs and she’s following me around I run her a bath and she stays in there for ages! And when she’s finished I turn the shower on and get at least another 20 minutes hehe!
After S's appointment the consultant sent out some social communication questionnaires for me and for his teacher to fill out, because at that point I had mentioned my concerns about noticing a few little traits that were becoming more apparent and making things hard for us all as a family. Lolly's peadiatrician has offered to give S a follow up appointment if his consultant wants to discharge him at any point. She really is lovely. So we got the questionnaires filled out and the SENCO (special education needs coordinator) gave them back to me to read and send off, I was surprised at what I was reading and we pretty much had the same concerns. It was like another blow to my stomach. Someone else has seen he struggles, not just me. But we were moving forward, the paperwork was sent off and they would either agree to an assessment based on the schools replies or reassure us they had no concerns based on the questionnaires.
Kenny had been for lots of appointments, he had been moved from one clinic to the next and after lots of blood tests, near passing out from the needles, lumbar puncture, MRI scan, cord scan, and they were all clear. The only sure diagnosis he had was Idiopathic – spastic – paraperisis. They all said this condition is normally on the back of a tropical disease, but didn’t know what it was. After another blood test and more near passing out we thought wed have the answer, but after weeks of trying to find out what the results were we were eventually told the blood test had been done wrong and we would need to repeat it! Annoying right? I've kept you lot waiting so long for the answers to his problems and his final diagnosis. We were in limbo, stuck between this rock and a hard place m, Kenny hates bloods tests. I felt so sorry for him. But he went and had it done and again after weeks of trying to get hold of his neurologist we received a letter, with a sort of diagnosis!! His blood test showed he had high levels of VERY LONG CHAIN FATTY ACIDS and given where they were raised they suspected a diagnosis of Adrenoleukodystrophy (X – Linked ALD)
At this point I should never have picked my phone up and googled!!! Never!! why I done it ill never know. There isn’t much research about this disease as its very very rare, I think I read that only 100,000 people have this disease in the world! My world came crashing down, I think google signposted me to the very worst case scenario. and at this point I would have preferred the MS diagnosis. Anything but this. I wanted someone to just take it away, wipe our slate clean so we could start again. It was just a dream wasn’t it? it couldn’t be happening to Kenny? For those of you that know Kenny, will agree that for him this path sucks! he’s a grafter, full of life, loves it, is the most selfless person I know, and its just not fair so why did this happen to him? He was referred to neuro – rehabilitation, they would manage his pain and his symptoms and try and confirm the diagnosis. He was sent for another blood test to confirm it. (he wasn’t happy about that) and referred onto a professor in neurology for diseases in oxford. (who later wanted another blood test haha)
Kenny was given lots of medication to try and we went home and started trying to organize them and get some kind of routine going.
So we actually had a really fun packed summer holiday. We kept busy with the pool, and BBQ’S, and family days. It was nice (ish) I’m not going to lie I hate the holidays. Its uncertain, disorganized, out of routine and quite frankly I just get fed up with the constant arguing, Lolly trying to take control and S not letting her play unless she does exactly as she’s told, and obviously Lolly never does as she’s told so it’s a massive struggle for them to play together and enjoy each others company. It was all consuming. Bless moo ma she just got on with it.
End of summer holidays and back to school, Year 3 for S and Year 1 for lolly, still with no extra support in place! I think its quite important to mention here that in my last chapters when talking about “the school” I was referring to one person inparticular, which was the head teacher. He didn’t make a return after the holidays for a reason which I cannot even type! But yes I hate to say it imagine the worst!,. The deputy head teacher stepped up as acting head teacher and things improved straight away. I’m so happy to say that. Because they got better, she listened to my concerns and adressed my problems as best as she could at that time. The educational Psychologist was booked in for September (that month) eeeek! and I had just sent off my appeal to the LA, (local authority) It was massive and cost me £21 to send by post haha. But I wasn’t messing about this time. I had numerous calls from the Local Authority reassuring me that even though they weren’t willing to assess at that point they were willing to help, and willing to come to school to mediate and implement a SAPS (support and achievement plan) Things had all changed this year too, the statement had changed to an EHCP (education health and care plan) and the code of practice had changed and everything had been shook up! I reassured the Local Authority that although they were helping I was still appealing! I received some massive booklet of a letter confirming court dates and hearing and deadlines I needed to stick to and it was very official it scared me so I promptly looked at the last date and hid it away in a drawer.
I received the Educational Psycologists report of which was very very insightful. Lolly was very behind and had definite issues and problems at school, She picked up on so much about Her its unreal. Its also important to note now too that I was so convinced that Lolly had a type of autism called PDA (pathological demand avoidance) She completely fit the whole criteria for it. In all her reports since she was tiny there are traits that are picked up on by the professionals. The demand avoidance, the need to be in control and the role play and mimicking! It was all there and although Lolly's pead said she could see it she wouldn’t diagnose it! I found solace, and support and friendship in the support group for it, there are thousands experiencing the same thing as me day in, day out. And it was there that taught me everything I needed to know about the system, statement process, requesting medical reports etc. and for that I am so thankful for that group.
One day, sometime at the end of October I received a phone call from the head of SEN at the local authority, She said to me that they have received the appeal, from the tribunal service and that after going through it all they have decided to concede the appeal and give her an assessment of her special education needs. I was so shocked can you imagine my reaction, I cried!!!
So just to re – cap, because its been a while. Sorry its taken me so so long to write again, my computer broke and then we had a time issue, its been a nightmare.
Where were we? so Lolly has a diagnosis, or several, the LA have agreed to do an assessment. And S is being investigated for NF1 and ASD. Kenny has a diagnosis of Adreno Leuko dystrophy and I have gone completely stir crazy haha not really!! Don’t get me wrong I have my moments. Don’t we all? Being completely honest I am majorly stressed out sometime to the point I worry about my health, but generally I’m fine, I’m not depressed or unhappy I’m quite positive and actually I genuinely love my life, I’m still young and fit and healthy. Although I have a lot to deal with, I’m quite a positive person. I’m the what will be will be type person, you know if its going to happen its going to happen we will deal with it and pull through because that’s what you do. Otherwise the whole family will break down. We cant have that, we all need to be strong and help each other, we need to support each other, and enjoy what we have. We have a good life. We have good jobs, and we have great friends and family whom I know will be there for us for the rest of our lives, and I’m so thankful for these people.
I had a few meetings with the assessment coordinator and she was quite positive that Lolly seemed a good candidate for an EHCP. The way she handled all the meetings was like she already knew that She would get one.
We had to get through Christmas first which was AWFUL!!!! I had arranged to have Christmas day at our house and cook for Kennys family and I was sick as a pig, All the kids got sick bugs and then I did, and then I got tonsillitis, chest infection and a tooth infection all at the same time. I hadn’t even finished Christmas shopping, Luckily I had been a bit more organized though cause what I had brought I had wrapped. I hadn’t done my food shop but I had ordered my meat from the butchers so atleast we had a turkey haha. Lolly was sick Christmas eve. I felt like I was proverbially dying! But we did it. it was nice and quite and lovely and boxing day I didn’t have a hangover Bonus!
Again I needn’t have bothered with toys because they are never played with!
I never sent Lolly back to school because a day after they went back she had to go hospital to have her tonsils and adenoids out. I didn’t want to confuse her. Bless my little poppet, we packed her bags and I done the normal thing in preparing her properly and she was less anxious, I spoke to the hospital staff when I got there about her going down first and apart from an emergency she went down about 2:45. They were great there though and didn’t tell her off too much. She was gone for ages. it was awful seeing her be put to sleep. Although it went really smoothly, she was so tiny and fragile and I felt awful, that look in her eyes as she was going was like betrayal. I also done something stupid and promised her no more tonsillitis!!!! oopsie.
I know children bounce back pretty quickly after things like this but damn this kid is a soldier. Two hours after her operation and she was wondering about the ward. The next day she was back to herself and causing trouble. We were discharged, and sent home and lolly was to stay in doors for the next two weeks and on bed rest…………… Yehright!!
We had a schedule of a few dates, and one of those was a meeting for us to go through what we wanted from the school and what support Lolly would need to be able to make progress. It was quite nerve wracking these appointments. Still doing things by myself, still organizing everything, still only being supported by my family and friends. This isn’t good enough really is it? in fact I find it absolutely terrible that there’s this little girl who has all these diagnoses, and not one professional is actively supporting us. I mean I didn’t even have any one whom I could use for advice. The reason why I was able to get us where we are today is thanks to the power of the internet, google and most importantly those strangers in the social network groups that I actively use. Without these I wouldn’t have gotten this far definitely not.
So the date that Lolly assessment goes to panel was the 21st of January. Just as lolly went back to school after her operation. Of course I phoned them on the same day, I was itching to know what had happened. They didn’t know, they hadn’t gotten the news in and I had to wait to another 24 hours before I found out, it was excruciating! But 24 hours later I found out that………….
WE WON!!!! She got her EHCPlan and I was so so relieved. I cried again. you have no idea how much relief I felt. She was allocated 17.5 hours of EXTRA provision. This was massive. It wasn’t a massive amount in terms of hours or money in fact it was a little bit piddly, BUT it was legally binding. It meant that whatever we write up as her plan had to be adhered to otherwise the school were breaking the law!!!!!! We sat through a couple more meetings, to prepare the ehcp and it was drafted, Which I promptly paid education equality a hefty amount for their input and checking services. They made sure it was worded correctly, and that all the reports were used to gain outcomes for the EHCP. They added stuff in and changed stuff around and deleted things out. I Then requested these changes after I had edited all the draft copy, and it was sent back to panel to be finalized. By March we had a final copy and the plan was in place. We still had to sit withthe school and the LA and breakdown her EHCP and put in to a SAP, (Support and Achievement plan) Formally IEP (Individual Education Plan) Which is a document that breaks down those bigger two year out comes into smaller termly outcomes. We still had disagreement with staff over Lolly's behaviour and what should be done and how she looks like she’s doing things on purpose etc and how to tell the difference. But we got through it and it was such a weight lifted off of me. This legally binding document was in place and it basically took on the role of me hehe but I wasn’t the law and hence why I was not listened to and ignored for years. So having this there and the staff putting things in place for lolly was like a godsend.
I nearly moved her schools, but when it came to the crunch I couldn’t do it, because although she wasn’t learning etc she knew the staff, and they knew her I decided to give it a year until her review and see where we stand from there.
So having this document in place meant that I could step back, it would do its thing and I wouldn’t have to keep on their backs, asking for things etc. It gave me more time to concentrate on S and what was happening with him in school. He wasn’t making much progress, he had been taken off of the SEN register last year and wasn’t getting much support for his education, his writing is barely legible, and he was having a real real tough time, with a couple of kids in his class, he was being hurt, regularly and I just felt awful for him. I spoke to the teachers, who promised to monitor it and they did, they made adjustments and they were vigilant but it wasn’t enough, he was still being hurt and I made a formal complaint. vigilance was stepped up again and still it didn’t stop, Stanley was coming home with writing on his legs saying he hated everyone and he was just generally unhappy and it was hard on all of us his behavior has been affected. A meeting was called and although it was primarily about the bullying, it turned into more of a meeting about his well being, and behavior traits. Things they are concerned about and that they are asking the EP to make an assessment (which still hasn't happened) and probably get him referred for ADHD. (Which I had to do) We’ve been concerned for S since he was in the very beginning of year two. It became apparent that he had regressed, quite badly. He was so bright, He was talking in sentences by the time he was 1 I mean seriously he never stopped. I couldn’t wait for bedtime because it meant peace and quiet. And I know that’s sad because some people have children who are mute, or non verbal but I’m also one of these people who don’t judge my own life and feelings by other people's circumstances. I’m sorry I know that’s blunt, I know there are people a lot worse off than us but that doesn’t negate my feelings, my emotions and how I’m supposed to think and feel. I have my life and I feel real things for my own circumstances, you can't just pick yourself up cause someone has it worse than you. It just doesn’t work like that. He also didn’t sit still, always bouncing off of the walls, and im not a juice and chocolate type mum either. Learning about Lollytaught me a lot about S and he definitely wasn’t copying, because he done lots of things before she was even born.
So Lolly has had the brain and Cord Scan and its all come back clear, so that’s amazing news. She’s also doing really well in school. She is coming out nicely and walking to the car like a good girl. I love these times she lets me hold her hand they are amazing.
S also has his follow up for NF1 on the 22ndJuly, I’m hoping his consultant discharges us and refers us to Lolly's Pediatrician. He has more marks this time though so I’m not sure if they will discharge.
So we have a very busy week this week (a year ago) im not sure I even know how im going to manage it!! here’swhat my weekly timetable for this week looks like.
Monday – Clean the whole house and take Moo to her Gymnast class (easy day)
11:30 Appointment at home for Kenny with the rehabilitation team, An Occupational Therapist and a Physio Therapist.
1:30 – Appointment at the school for a TAC (team around the child) Meeting. (which I still need to prepare for)
Wednesday – Kenny has a hospital appointment and Lolly has a Hosp appointment at the same time. Lolly's is for her frequent falls with a view to receiving Peidro Boots.
Thursday – Work
Friday – Gastroscopy for me (gallstones) and work!!
Plus all the normal day to day things we families do like cook, clean, pick up and drop offs to school. etcetc etc………..
That is a busy week!!
(lola at her brain and cord scan! And the masses of paperwork for the appeal)