Hello, it’s me again, for those of you who don’t know me, my name is Ana Bonasera, I am now a 25 year old mother to three boys – NJ is 4 and the twins, Jude & Luca, are 3. For the past 13 months we have been living in what I call limbo due to not knowing what is preventing the twins from developing the ‘appropriate‘ language and communication skills for their age. To say it’s been a tough year is probably the understatement of the year…the roller coaster of emotions we’ve been through, including massive lows of frustration, anger and sadness … with highs of celebrating small victories. If you want to know more about how we got here, check out my previous blogs but today I am going to be talking to you about the MDA week…
Although it sounds a bit like a drug, it actually stands for Multi Disciplinary Assessment – this is a week of seeing different therapists and at the end of the week they come together to make some kind of ‘diagnosis‘ and report back to the parents with steps to progress.
Our first appointment was on Tuesday and we had to be at the children’s hospital at the John Radcliffe for 9.30am, so with NJ dropped off with a neighbour who kindly dropped him to school and Aunty Em to pick up later, we left not really knowing what to expect, feeling extremely nervous. But looking like a school kid with a back pack filled with snacks, drinks, spare clothes and nappies galore (you know the usual emergency mum kit) we were ready to go. Grandpa came with us, dropped us off and went to attempt to find a space to park the car, even with a permit it’s near impossible!! Once we had found the Community Paediatrics department (it was so hidden if you weren’t looking for it you would miss it, I actually walked past it twice!), we were kindly greeted by Becky – who would be with us all week – and brought into the play room…just wow! Absolute heaven for any child. Every toy you can think of, messy play, outdoor climbing frames, trampoline and the best of all a sensory room to die for!
Both the paediatrician Dr Gill, who we saw last August, and a new speech & language therapist (thank god) Christine, came in and talked me through what was going to be happening, asking questions about the boys. The two specialists both asked me the same question, “When was the last time you saw the speech therapist?” I replied “Last April” –they both kind of paused and thought about that for a moment and actually said “Why haven’t you seen a speech therapist for 13 months?” As if I’m supposed to know the answer to that! I think that’s something they need to be investigating. We actually paid to see a private speech & language therapist for a couple of months, before she went on maternity leave. Anyway, the plan was for me to be with both twins during their session with Dr Gill, as there were questions that needed answering, and for Grandpa to sit in on the test with Christine. After each session with the paediatrician the twins also had hearing tests, which came back all fine, no problems and no glue ear. For Luca, as he was a little distracted and frustrated from being put through tests and questioning for so long, he wasn’t too happy about partaking in the hearing test and not interested in paying attention to strange long sounds. Before giving up, I suggested trying a favourite song of his on low on my phone, so out came the Moana soundtrack and he passed with flying colours.
At the end of the sessions, I got a chance to chat to Christine about how the boys did on the test. I managed to record it too so that the boys’ dad could listen. The test was actually for Autism in particular, which I didn’t actually realise. She said that both boys had different strengths & weaknesses but would score roughly the same – Luca’s she hadn’t yet added up but Jude’s she had. On the scale, a score of 8 is deemed as borderline and 28 is deemed as high, Jude scored 18, so right in the middle of both. The idea of the boys being autistic doesn’t actually scare me as much as it probably should, I am just so relieved that finally we have something to work with, no more ‘living in limbo’ now we know we can seek help in the right way! It was more of a relief than anything else. It was a long and tiring day and only the first of three.
Day 2 came around and we only had one appointment scheduled to see the psychiatrist, Rebecca. You’d think this would be less draining than seeing three different people like the previous day, but this was exhausting. Going back through every little last personal detail (twice over), literally everything from pregnancy, birth, to breaking up with the boys dad, to their first smile, walking, diet, etc. Luca was first in and pretty much from the minute we were in the room, he wanted to leave. He caught on very quickly that going into the little box rooms was not as much fun as being in the amazing playroom. The best way to describe it, is a bit like caging a wild animal, the constant fight to get out and break free. Being constantly dragged to the door, while trying to remember the past, answer the questions to my best ability, oh and he also found the light switch! So we ended up in darkness a few times too. She then went on to try and do some tests with him but as he was so uncomfortable and still persisting he wanted to leave, taking my hand and pulling me to the door, I asked if I could play some music to see if he would calm down, so the soundtrack of Moana saved us once again! The tests consisted of putting sticks in holes, puzzle pieces, working out how to get things out of boxes, etc. he did his best and at the end she asked me what age I would say Luca was at with his abilities compared to having seen what Nathaniel grew up like and I guessed about 18 months which was actually dead on.
Jude was next and he was so much calmer and entertained himself in the room with the toys provided. It’s funny because they swap personalities often, one will be calm, the other will be frustrated and vice versa. Out of the two of them, his abilities have definitely progressed more over the past year; he’s able to say a handful of words and understands more than Luca, not a great deal more though. During the tests he actually got one of the puzzles exactly the same as Luca, fitting the square in straight away and trying to put the triangle in the circle and circle in the triangle, which was strange and very interesting! He passed more of the tests and continued to do harder ones, including matching colours and scored around an age of just over 2 – which was higher than I actually expected.
Day 3 came and I was in a horrible mood, the twins weren’t particularly happy either and NJ was sad and didn’t want me to ‘leave him’ again, so I decided that he would come with us. He has been a massive part of the twins’ life and such an amazing big brother so it just felt right that he should be part of the process. The final day of tests and we were scheduled to see the dentist and for the boys to have bloods taken. The dentist was all fine, she was impressed at their love of healthy food and teeth all looked good. The bloods…taking the boys in one at a time, starting with Luca… I had to hug him belly to belly while one person stood one side trying to distract him and another held his arm straight on the other side. Then a man locked Luca’s leg between his to stop him from kicking whilst taking blood from his arm. He cried, he screamed, he struggled and I cried too. I had managed to keep it together but that was completely heartbreaking and the worst thing was I knew Jude was going to be even stronger. He was the same, it actually took longer to get the blood out of him, it literally felt like an eternity and when they turned to me and said, “We might not have enough, we may have to do it again” my heart literally sank. Luckily they had enough! NJ was so amazing with the twins when they came back, he could tell they were sad, he even rocked Luca on the rocking horse and stroked both their arms, it was beautiful.
We also met another amazing family, who were going through an extremely tough time aside of the MDA and the beautiful boys’ special needs (I don’t want to mention their names incase they’d rather not be known). But if you ever think you’re having a bad day, this brave man is a widower, his wife of 19 years died 9 months ago from cancer and he had 1 year old twins and his beautiful boy who we had the pleasure to meet. Honestly, one of the most genuinely lovely, kind hearted men I have met, with not a moan in the world! Amazing.
And that was that, we were all done, no more tests, but we have to wait until this Monday for our round up meeting. It normally occurs on the Friday but as our Dr is Witney based we are having ours on the Monday – slightly frustrating to a) have to wait out the weekend and b) because neither the speech & language therapist nor the psychiatrist will make the Monday meeting. However, the positive is the boys’ dad will be able to attend the Monday meeting. I knew this week was going to be a big week. I think it was harder than I actually expected but the place was even more beautiful than I thought it would be. I look forward to tomorrow’s meeting and finally having a way to progress and move forward to help my gorgeous boys have a voice in this world.
Just want to say thank you to everyone who has supported me and the boys, in any way shape or form. It means so much! Thank you, thank you, thank you!
Lots of love & gratitude, Ana, NJ, Jude & Luca xxx