4 struggles and other issues came and went along our journey
the bubble bursts , ITS ALL GONE TO FUCK
Mr fab had been placed under the Assessment of Needs act as recommended by my Public Health Nurse. This is why he got his referrals so quickly for Orthotics, Physio, OT and SLT. So what now, the only thing missing was a Psychological assessment, we need a diagnosis on paper before b of c can officially take him (or something to that affect, its all a blur). Ok what was that name the ABA Psychologist mentioned to me again, grrrrr what was it? I rang her up, ah Prof. I log onto Rollercoaster and ask questions, wow was he a popular man, both in a negative and positive way. I rang my Paediatrician, would you recommend this man, Yes he would. I rang the professor and he was lovely, he gave me the number for his secretary and I made the appointment.
We headed to the Prof, we got lost in our native county, how embarrassing. We got there eventually. My nerves were shot, here we go again, another assessment, another diagnosis, I can’t take this, and why is it so complicated to get a diagnosis in this stupid country was all I could think of. My husband’s nerves were well gone; he had resorted to biting the skin on his fingers as no nails left. In we went, oh god, my stomach in knots.
He looked at Mr fab happily sitting in his buggy without a care in the world, he kneels before him and speaks softly to him, Mr fab makes no eye contact or emotion, he just pushes him away, and for a 22 month old child he got some power in those arms and legs of his. He then asks me all about the birth, development, my family, my self, Gs family, himself, My genetic history, yes autism all round me along with aspersers, adhd, the whole 9 yards runs through my family history. After a long bout of chatting I get handed page after page of information, what’s all this? Ah i see the words Autism highlighted everywhere, and there it was, Autism diagnosis, report in a week. As I was leaving, the professor said to me, who is your paediatrician, as he was skimming through his report, i told him his name, stick with him, he knows his stuff, your son is in good hands there, I could only smile in agreement, yes I taught the very same thing.
I was happy as this meant L would remain in this service. Things could get back on track, happy days were here again, or so I taught. I had my report within the week; here you go hse, oh but M they will not accept outside reports, he’s on waiting list for hse psych. The Physio hands me a further blow. Mr fab's feet so severe that if it's not corrected he will need surgery, fine let’s correct it. He needs paediatric boots, 200 euro, ok I can do that, he also needs night AFO's (leg splints) they will cost 1800 euro, WHAT are you guys kidding me, I’m sorry I just don’t have it, I’m starting to seriously break down now, its all too much, I so cant handle it all, I leave and drive to my mums where I sob for hours, I’m not a crier but did I sob. I can’t do this anymore mum, it's just too much, it's so unfair, he’s just a tiny baby still and all this is happening to him, us, why poor little L, oh mum what am I going to do.
I go to see my public health nurse. She advises me to get applying for a medical card for L, she tells me all about DCA and carers allowance, she advises me to ask the community welfare officer for help. I go to see the welfare officer, she tells me medical cards are impossible to get now a days but she’ll do her best, I break down in her office, she’s a lovely woman, she explains how she has seen too many families go through similar, the help we have is useless but better than nothing, she gives me all my forms, I send them off.
Another blow came; A new community nurse was now L’s key worker. He has a new nurse, I don't like her, no this won’t work, no no no. I try and bear her one more time, ok no, why? She tried to take my poor sons bottle (his only comforter) away full stop, oh no you don’t sweet heart, Chewy tube only, yea you think, erm hell no. I explain, L also has a question of ADHD hanging over his head, he is hyper, when he falls (several times a day) his bottle is all that will calm him down, he will only sleep when he has his bottle, he will only sit in a restaurant when he has his bottle. L suffered from extreme fits of frustration also, he head banged severely causing injuries to us and him, he almost knocked himself out on the tiled floor, and we had to take him to hospital where he was sedated. This was so regular that I was given a prescription for chloral hydrate so I could sedate him my self in emergencies. Could you imagine my son with no bottle to calm him down, what hell would my life become? Believe me when you’re sedating your 20 month old baby its no joke, its scary, it’s emotionally disturbing, it’s sometimes criminal. I verbally and officially in writing insisted that this nurse be taken from my sons services. I have to say, one letter and she was gone, my old nurse from the b of C was back, thank god.
Good news, we get a medical card for the whole family, we got DCA, I get carers and respite, all backdated to when he was 1, I’m in shock, I also get incapacitated child tax backdated to when he was 1, I’m in total shock, my luck is changing again. The Assessment of Needs Officer rings me, Professors report accepted providing I put his AON on hold, I can reopen it any time, he can go straight to B of C services, WHAT oh my god, thank you Lord, Thank You Thank You Thank You.
I’m told all about Home Tuition, i put in my application, not a hope, must be 2 and a half for 10 hours and 3 for 20 hours. New fight but I wasn’t going to win this one, and i knew it, these people were just assholes through and through, the only thing beating was a cold pulse, no heart what’s so ever. Ok I’ll accept it; battle lost, but mark my words, department of education, I WILL BE BACK, GUNS BLAZING.
L gets his boots and night afo's, their not as bad as I taught, their quite cute. They have pictures and all on them, would he wear them, would he fuck. They lasted a whole week, he is sooo lucky I did not have to pay for those things, grrrrrrrr he even bit a chunk off them, don’t ask me how he did that, he is nicknamed jaws in this house as he bit everything and everyone in site.
L is now with a new orthotics team, a new Physio, the same OT and the same SLT, I’m so happy, he is officially under the care of the B of C services. Again our luck is changing, another battle won, another step taken up the ladder, were on our way through this mess, were doing well, we almost lost it, we almost lost all faith, all hope, all sense of reason, but we made it, we have war wounds but we made it, were smiling and were happy with all we have achieved
Things are starting to get very busy, exhausting appointments, all long car journeys away, day after day, L is not sleeping great and has discovered the art of shit smearing, yes, he likes to take shit from his nappy and paint his bed, himself, the floor, the wardrobe, the tv, windows everything, yuck. I’m just so exhausted from everything that I’m so drained it doesn’t even make sense, what’s wrong with me?
TFT's and B12 functioning perfectly, best in years, hmmmm so what’s going on?? Ah there it is, I’m pregnant. How thou, no clomid, no planning, nothing. Because my bloods are normal for once is why I got pregnant without medication. Well this baby is fine and healthy, feeling sick and tired very early in pregnancy. Ah sure, yea, all Mr fab/s therapies start, all in Dublin, another county after county. Oh for the love of god, 3 hour drive, 2 hour drive, half hour drive, I’m really exhausted now. I’m shown all the physio stretches for his feet, all the OT, all the speech and language stuff. Oh god it’s just all too exhausting.
We have some other issues going on behind the scenes of L’s with our daughter, but yes as I said she is her own blogs worth, could really write a best selling book there lol. I’m drained and uber stressed.
In the mean time I’m back and forth most of the week with L’s appointments, his in home worker with me as she’s learning his programmes also. Home tuition is looming, he will be entitled soon, have to start looking for a tutor. Was hoping (well praying his in home worker could do it, but every time we come up with a solution there is something in the way that we cant get round Dept of ED with.) she is still working with him 10 hours a week as part of the B of C for now. We are allowed to use the local resource centre as he will do nothing at home. We are following an ABA programme especially written for Mr fab, although not as strict as was implied. I nearly go into a coma type sleep in their sensory room, that bubble tube is amazing and calming.
I’m still on rollercoaster getting advice and support from the girls. I’m exhausted, all this while being pregnant is sooo tiring, but I won’t moan about it. I try everything I can to keep up with everything but the housework is killing me. Its just too much, I’m starting to get down a good bit as I hate my house to be in bits, wash baskets full to the top, dishes everywhere, you see I’m a bit like Monica from friends, but not AS bad. I actually can’t cope with my exhaustion. I start trying to have a nap during the day, but then when I nap, the house work piles up twice as much, I just can’t win.
If by some miracle, a note comes through my door, Lady available to mind kids and do housework. DH says, were doing it, not to mind the kids but for the house work, ok Hun, its so expensive, but we don’t smoke, we don’t drink (well hardly ever) and when can we get out for a night, so screw it, we’ll do it. A wonderful Brazilian lady showed up, I love her, she’s sooo nice, she’s playing with Mr fab and he likes her, he’s smiling at her, and he’s looking for more tickles. I’m blown away at how L takes to her. She comes in twice a week for 3 hours. I love when she’s here as she makes me go for a nap, she minds Mr fab, DH is here anyway working down stairs. My wash baskets are manageable, she irons (I never did that anyway) my house is sterile it’s that clean, oh are you supposed to dust the top f curtain rails EVERY WEEK? Where does this woman 15 years older than me get her energy, she’s bursting with the stuff.
Just to get a nap twice a week is rebooting my energy levels. It also gives me time to think and research on the net. How did I get pregnant so easily, why is my thyroid working so well now, how come my B12 is at a good working level???? I talk to the endocrine team in the new hospital, I ask the same questions. Sometimes this happens, having a baby can knock your system so out of whack, and then another baby can put it all back in working order again. hmmmm I get to thinking, what if I actually do not have a fertility problem, what if I actually had a thyroid problem when trying to get pregnant on Crazy jane but it just went unfounded
As my thyroid was perfect on baby no 3, I’m in a good place, this baby will be ok, I think this baby will escape the spectrum, I think he’ll be just fine. All my scans are perfect, I speak to the midwife. I explain I want a section, well dear, you won’t get one, and you have no need for one. Oh no you see I do, I’m afraid of giving birth after Crazy jane (miss natural no pain relief split me in half birth) No dear, the doctor your under wont hear of it. Oh shit, I’m panicking; the nurse sees the panic, are you ok? Nope I’m almost white and having a panic attack. She quietly advises me to change the doctor I’m under to a wonderful man. Ok I’ll do that. Done, changed over, app in 4 weeks time.
Finally I’m nearing the end of my pregnancy. I’m dying to get my body back as I hate being pregnant, all of it, every last bit of it. I struggled with the pregnancy because of all the stress and travelling and appointments all the way through it on top of 2 kids to add to it.
I went into hospital on the 6th of January, my self and G got something to eat there after I had checked in. I was so looking forward to tomorrow, just to finally hold my beautiful baby boy, we had decided to call him Lunatic john R after we saw him on the 3D scan. I knew exactly what he looked like; now all I needed was him in my arms safe and well. G left and of coarse I did not sleep a wink that night.
I rang G that morning, where are you, you getting ready to come in? G had food poisoning and had been vomiting and crawling on all fours that night. My mum was there as she was to mind Mr fab and Crazy jane in my house until I came home after the few days recovery. Oh my god, your kidding me, at first I was almost sobbing, but I just said, no. no way, this is not ruining what I’ve been so looking forward to, not a hope, I’m sorry your feeling shit G but wake my mum up and tell her to get her ass into this hospital, you got to pull yourself together and mind the kids. If it was me home with it I’d have to look after myself and the kids also, he can do it, he’ll be fine. My heart went out to G, he was devastated, but I could not let it upset me too.
My mum is here, were waiting and waiting to be called. My mum is shitting herself, oh M, what will I see, I cant do this, I can wait here for you, no you wont, your coming with me. Its time, were ready for you the nurse said. Oh god my mum is white as a sheet, the nurse brings her off to a separate room to get her dressed in gowns etc. I’m talking to the doctor, oh by the way I’ll pass out after the anaesthetic, don’t panic, I’m fine. He said no you wont, it’s all new stuff, and you’ll be fine. The doctor is lovely, were having a laugh, making jokes bout G not being here etc. I’m really at ease and I’m not nervous, just get my baby outta there. I of coarse pass out, the Dr said when I came round, well you were not kidding were you. I feel very unwell, the anti sickness meds had almost made my head explode, I’m burning up, their putting cold compresses on my head. I don't care, my baby is here, he’s screaming (all muffled as in the womb still) oh my god can that boy scream, and he screamed and screamed, I got to hold him for a few min’s, (he’s screaming) then my mum was asked to take him to the nursery while they fixed me up and she had to dress him and feed him.
I finally get back to the ward, my mum is sitting there holding Lunatic john, he’s gorgeous, all 7 lb 8 oz of him. I’m ecstatic; I make a video for G, I’m sending pic’s to everyone. G is very upset that he can’t be here. My mum is bursting with pride, look at my grandson, I was the first to hold him, dress him, feed him, change his nappy, yay look at me lol. All my visitors come in, I get presents of teddies and choc’s sent to the hospital from his godparents T and A. It took 2 days for DH to be able to get to see him, and with that he can’t even really hold him.
oh dear, what have we done
After a few days I’m ready to come home. I’m so excited to get home, to my own house, my own bed and just chill out and enjoy my new baby with my family. The journey home is an hour's painful drive, every bump, turn and minute is agonising, it is like being stabbed in the stomach over and over and over. I get home and there is my brothers, my mum and dad and Crazy jane and Mr fab.
L took one look at R and tried to push him off my lap, I’m in so much pain that the strength of L is too much for me to handle. I knew L would give a reaction, but I honestly was not expecting that. L wants’ this baby gone from my lap, gone from HIS mum and HIS sitting room, oooops, oh dear. Maybe after a few days it will settle down said my mum, maybe he just needs to adjust, give him time, he’s only a baby and he’s all confused. You see this part I know, but something told me that L was really not happy with me.
A few days go by, visitors coming and going, I’m really exhausted. L is refusing to acknowledge R, he does not want to be in the same room as him, does not want me near him, cannot tolerate even the slightest little sound that R is making. I’m really devastated, I knew L would react but this was severe, I’m just beside myself trying to figure out how to fix this. My friend takes Mr fab up to hers a couple of times, my mum also takes R while we spend time with Mr fab on our own. Nope nothing is making life any easier; the simple fact is that in L’s eyes this thing that has invaded his home really should not be here. I read all the web sites, all the books, nothing, I’ve tried it all, and there is no fix to my problem.
I’m finally able to leave the house, this helps a lot, as serious cabin fever had set in. I am not really able to be grounded and stuck in the one place for long periods of time. I know I should not drive but screw it, I have to get out of this house, I have to get away from the whinging, temper tantrums, and yea the whinging, I really just can’t take it. I go shopping, I go for lunch, anything just to get me out of the house, the house that is becoming more like the nut house day by day.
Me and K also have a few girl’s day out, lunches, shopping and cinema. I really needed it as does she. As I’m so pissed off with life an email for a face book invitation comes in, again, this face book thing, I’ve ignored it so many times as wasn’t that fussed about it, fine I’m bored, I’m fed up I’ll do it. I log on and my friend from rollercoaster has sent invites for all of these names I’ve never even heard of, there all from rollercoaster and mums of Autistic kids etc. Ok what do I do, I accept the requests and all of a sudden I’m up to 50 odd friends on my face book, even before I’ve had a chance to add my own actual friends and family. My wall is filled with welcome messages and info on the people welcoming me.
Face book is a funny thing, you kind of get addicted, even thou you have very few free hours in the day you suddenly find time you never taught you had for Face book. I’m am now part of a community of people just like me, stressed, concerned, frightened, tired and fed up mums, you see we are fighting a system of therapies, supports, entitlements, education and help for our children and its so exhausting. Every day a letter coming in, denied this, denied that, denied denied denied. We are all fighting for our children, we all know each others battle scars, each others exhaustion, see we all share something, we are all mothers of children with intellectually challenged, physically challenged and differently able’d children, You see you can ask these people a question, it might sound ridiculous to all who have children with no problems what so ever, you might even think, has M gone off her rocker, what the hell is she rattling on about, these questions are aimed at my friends in autism land, autieland as we call our selves, or as my sister calls us the autie lollers as we tend to use the letters lol a little too much as she sees it LOL.
I’m hooked on face Book, I even catch up with friends i went to school with and have worked with from years back. Jesus names from so far back that you never taught you'd see or hear from them again. Face book became an escape for me, it’s also where i come to get advice or support from the people who know what I’ve just gone through or am going through, these people pick you up in a heart beat as they have actually been there, they have worn the t shirt, and printed up new versions of it. You then start to become friendlier with some more than others, you no longer just share your problems, but you laugh and giggle too, you meet for coffee and just enjoy your time away from autieland. You sometimes forget that you are a real person in autieland, you kind of think your life is just doom and gloom and forget that there is another life outside your front door; you tend to live in a bubble and forget that you can bust it at any time you want to.
A few months go on
I’ve been really down and out and I’m so exhausted, even broke down in front of my friend she nearly died, oh god this isn’t you, you don't do this. You see I really can’t cope anymore, my tutor quit as small children was not her thing, and truthfully I hadn’t the energy to care. My self and G very snappy, just pure exhaustion from the both of us. Stress was at its highest and I was crumbling underneath it all. I was slipping further and further into depression but trying to hide it and rise above it and pretend it was all fine.
I’ve mentioned about other problems going on in the background with my other child also, some days things just got way too much to handle.
K has a horse stabled about an hr away for where we live, K loves horse riding and it’s her escape too from the madness of our house, Having this horse takes up so much of my time and is stressful too. Driving K back and forth to horse riding is exhausting and its 4 days a week, not to mention mucking it out, grooming, washing, feeding and training etc,
G hates this pony, part of our argument was that this pony was bleeding us dry financially and taking up way too much time and G deadly allergic to horses. Ten minutes into one of her lessons Crazy jane fell off the pony screaming. She came over to me, I’ll get back up in a minute mum I’m just very sore, shed yelp in pain then settle again. Crazy jane I think we need to go to the hospital, no mum I’m fine, I’ll be grand I’m getting back up now in a minute, No Crazy jane hospital lets go. Ah yeah she broke her elbow. OH GOD I have to make the phone call. G I’m in hospital; Crazy jane fell off Snowy and broke her elbow. We finally get home and G is really gutted for Crazy jane as she is in a lot of pain and is very upset about it. We get her into bed after ages of trying to get her clothes off. Were in the kitchen talking and we just burst into laughter, oh my god babes, how much more is going to be flung at us, G calmly said, well you know we have to cancel the holiday to lanzarote now, ah there it is, there is the something else. Of coarse we do. It was in 4 weeks time, we talked for ages that night and both full of apologies for being so snappy lately and just admit that the stress is over powering us.
We finally decide to get the cleaner in for a second day even thoe were financially stressed, I decide to sell snowy as G is really pissed off that me and Crazy jane are gone every day and weekend to this pony and financially were struggling to keep her.
The weather is so hot, were having a massive heat wave. Mr fabulous is due to under go a procedure for his feet. He is to have Botox injected to both ankles and have plaster Paris put on both feet and legs to correct severe damaging tip toe walking. Mr fab loves to swim, he goes almost 5 times a week, how in this weather could I let him have that procedure done and stop him from doing the one thing he loves most, swimming. I make a decision to cancel the procedure until October; casts in this weather would be a killer. Jesus it’s great that Crazy jane did break her arm in a strange way as it allowed Mr fab to see and feel a cast, it might not be so strange to him now.
We were plodding along daily as you do and struggling at times.
oh god mr fab, mr fab
Things were falling into place, it was still hard but picking up at last. L had found a new tutor. I really like her. You know when you meet someone for the first time and you just instantly like them, and you know your child will too. Well that’s the feeling I have with this girl. She’s perfect for Mr fabulous. She didn’t come through my door with a big glowing CV, she didn’t make out she was anything more than who she was. She took on board a lot more than the position for a tutor bargained for and that’s why I respected and trusted her, she wasn’t in it for anything but to help my child any way she could. I love this girl.
I was off to a horse riding lesson I booked just for me, it was part of my time out while kids in school. Part of my road to recovery. I drop Crazy jane to school, but L is still asleep, he has a cold and had a rough few nights so I just taught he was catching up on some zzzzzs. I tell the cleaner to listen out for him as he should be up soon. I got back from school run, but L is still asleep. Did you ever get a horrible eerie feeling take over your body? I am afraid to open the door to check on him; in fact I’m terrified but why? I go in, all your worst nightmares before your very eyes; I’m numb as I process what I saw. OH MY GOD, CALL AN AMBULANCE NOW. My child, my beautiful baby boy was dead. I taught he was dead. I’m trying to compose myself but I can’t. I get it together, his lips where cream, I couldn’t move them; it was like stiffness had set in, his eyes were blank, expression less, and he was so cold and stiff. L wake up, please just wake up, L please wake up, the cleaner is on the floor screaming, right she’s doing all the panicking for me, I can concentrate on this. I grab my phone, ring the ambulance while I gently shake L and rub his chest roughly.
Oh my god, a gentle week cry, oh , he’s alive, Jesus , L stay with me baby, L, come on, don’t you dare leave me, I keep annoying him and prodding him, L, stay with me, STAY WITH ME. The ambulance comes, straight on the stretcher and hooked up to machines, hospital here we come (AGAIN)
Its all good, he’s still white as a sheet but some colour is back in his face. The nurses check him every 10 mins, I ring G, he is barely able to compose himself. L is his life, you have no idea how much he loves and worships this child. He races home from Dublin (he was working as he does there once a week, every week) He even almost hit a swan that decided to park it's arse on the m6 for a rest. Mental traffic, I taught I was going to get news that he too was in a hospital bed, I was sick with worry in every way.
L is observed day and night, my husband had his net book and 02 stick in his bag from work, and he left it with me in the hospital as he knew I wouldn’t sleep a wink watching L constantly. Ah netbook, I can talk to my FB girlies, no better women for a time like this. A few had been down this road so many times with her own kids, they walk me through every step of a seizure, I never felt more comforted than I did that night, all my girls were just short of hugging me for real and holding mine and L’s hand all night.
The Peads team came round the following morning, they asked their questions etc, we’ll be back soon, and they were setting up and ECG for L. Believe it or not I had an appointment upstairs in the same hospital that morning. I had a kidney stone earlier that month which caused me horrendous pain and I was to be booked in for a ct scan. I went to see the Doctor, there is a huge queue. Your having a laugh, I can’t sit in that. G is downstairs with Mr fab but I wanted to see the Doctors as you know your self, men are brutal for things like that, and they won’t ask the questions mums would.
I tell the nurse my situation, she gets me in next, ah woman I could f*****g kiss you right now. The doc is talking away, I have no clue what he’s saying to me, he asks me am I on the same planet, nope, I explain all, Ok we’ll book you for a scan, anything in mean time call us, get back to your son, thanks see ya. I boot it down stairs or up, can’t remember lol.
The peads team came back around, they will book L in Temple Street for an EEG, and they tell me they will never know cause or if it will ever happen again. What kind of an answer is that, oh that puts me at ease, not. I understand it thou, they can’t, how can they. L is allowed to go home as ECG was normal. Thank god.
Both I and G don’t sleep for weeks maybe months after. I’m afraid to sleep, we take it in shifts and we watch on a baby cam that has been in L’ room since birth. Every time I nod off I wake up with nightmares, he’s dead, he’s dead. G having to calm me down and I run to monitor to check, I can’t function anymore, and my worst nightmare actually almost came true. I’ve never been more terrified in my life. The taught of loosing one of my children or harm coming to any of my children terrifies me. How do you recover from this?