When S was first referred to a paediatrician we had our first wait. We had to wait for a panel of strangers to decide if our child deserved to see a paediatrician, if her problems were significant enough to need further investigation. As we waited I allowed myself to wonder 'What if they say no? Would that mean I am just a bad mum? What then? What do I do with my child who won't adjust her inappropriate behaviour no matter what I try?' I also hoped they would say yes, because that would mean it isn't my fault, these people who will never meet my child think there may be a reason she acts how she does, and it isn't me. Then I got to thinking that if they say yes that means something is wrong with my daughter...something wrong with my baby? How did I miss that?
So she got a yes and we waited a few more months to see the paediatrician and then a few more after to see various professionals, the appointments dropped through the door and the months between did not seem to drag too much. As December snuck in I started to think more about S's behaviour and her little quirks and one day I googled 'Aspergers' and suddenly I started to see my daughter. I googled more and more, I even went to the library. The more I learned about not only Aspergers, but the Autism Spectrum, the more my world started to change. I started to realize S had more quirks that I had not even registered as a little odd. That month everything changed and suddenly waiting started to really pain me. I needed to know if my new found knowledge was giving me an insight into why my 'easy' toddler was becoming an awkward volatile preschooler. I needed to know if I had missed something that could potentially change our lives forever. I needed answers and I needed them now.
So she got a yes and we waited a few more months to see the paediatrician and then a few more after to see various professionals, the appointments dropped through the door and the months between did not seem to drag too much. As December snuck in I started to think more about S's behaviour and her little quirks and one day I googled 'Aspergers' and suddenly I started to see my daughter. I googled more and more, I even went to the library. The more I learned about not only Aspergers, but the Autism Spectrum, the more my world started to change. I started to realize S had more quirks that I had not even registered as a little odd. That month everything changed and suddenly waiting started to really pain me. I needed to know if my new found knowledge was giving me an insight into why my 'easy' toddler was becoming an awkward volatile preschooler. I needed to know if I had missed something that could potentially change our lives forever. I needed answers and I needed them now.
Unfortunately the NHS does not cater for urgency as I was soon to discover. After meeting an Ed Psych in January, we learned of a test they could do that would help them to decide if S's traits pointed towards Autism. We waited to hear when this test would take place. I grew impatient with no contact from anyone and no idea who I was even going to hear from next. I started to look for knowledge and understanding elsewhere. I talked to other parents, in a similar situation. I continued to piece together what I understood about ASD and found more and more pieces that fit S. I asked questions on internet forums and joined Facebook support groups and it all seemed to fit. I tried to call the Ed psych to find out when this test would happen. I then read a post about an ADOS test, this sounded very familiar to what he had described and I was still waiting, by this point it was March and I was beginning to get very frustrated with the lack of contact. Waiting is hard enough but to not even know how long you will be waiting is just excruciating. I finally got a call just weeks before to say S would have her ADOS test on 2nd April 2012.
I foolishly built high hopes this test would give us the answers we needed and I was wrong. Turns out the ADOS test and S's paediatrician were not at all helpful. We then complained about the test and paediatrician and got into CAMHS, unfortunately we were not seen again until June. As all of this happened some of S's behaviour was becoming harder to handle at home and school she had almost got through Reception year as all this happened and the help she could have had, SHOULD have had was about to set her up for a terrible fall when she left the comfort of reception year and the trusting relationship she and I had built with her teacher.
As S stepped into year 1 (her 2nd year at school) we started to hit hurdles which I wrote about in an earlier blog, Calm After The Storm. By Christmas S had started to become a real cause for concern in school and they had started to get others involved and looked to be headed towards a need to apply for a statutory assessment. We were growing tired of the lack of communication with the school, CAMHS were trailing us along and I had really reached breaking point. Enough waiting for others to pull their fingers out. My daughter was in desperate need for help and everyone was failing her. As her mum I have a job to ensure that doesn't happen, so myself and daddy devised a plan. We got stern with CAMHS and were assigned a case worker, we made a parental statutory request and we wrote a letter of complaint to the school.
It is now March and despite various meetings and observations CAMHS have yet to give S any form of help with her anxiety. Just this week I had to put on my battle gear and fight for a planned meeting to not be cancelled due to one of two staff members being off sick.
On the school front I now have to bring S home for lunch but she has full 1:1 and despite a few wobbles she is starting to re access the curriculum (after a few months of completely refusing to work) and her statutory request has been accepted.
This month we have plenty of meetings to attend but where they will lead is anyone's guess. Will the next meeting with the Dr at CAMHS mean a diagnosis? I highly doubt it! Will it even go ahead? It has already been postponed once and it wouldn't be the first one to be cancelled last minute. If it is not a diagnosis? Where will we go from there? How long will we be waiting for that?
Despite a yes to statutory assessment we could still get a no to a statement, or a statement we are not happy with, which we would have to appeal! We have to decide where S should be educated. Can her needs be met where she is? If not where?
On top of all that, despite it being glaringly obvious S needs a lot more care than your average 5 1/2 year old, we have to wait for someone sat in an office to decide if we can have DLA to help us provide S with more of the things that could improve her life.
Some of these waits will bring even more waiting, some may bring good results some bad but in the meantime we have to trundle along and try to stop anyone making our waits longer, all the while doing everything we can to fight S's corner so she gets the help and support she needs as soon as possible to prevent her needing more and more later on in life.
It is now March and despite various meetings and observations CAMHS have yet to give S any form of help with her anxiety. Just this week I had to put on my battle gear and fight for a planned meeting to not be cancelled due to one of two staff members being off sick.
On the school front I now have to bring S home for lunch but she has full 1:1 and despite a few wobbles she is starting to re access the curriculum (after a few months of completely refusing to work) and her statutory request has been accepted.
This month we have plenty of meetings to attend but where they will lead is anyone's guess. Will the next meeting with the Dr at CAMHS mean a diagnosis? I highly doubt it! Will it even go ahead? It has already been postponed once and it wouldn't be the first one to be cancelled last minute. If it is not a diagnosis? Where will we go from there? How long will we be waiting for that?
Despite a yes to statutory assessment we could still get a no to a statement, or a statement we are not happy with, which we would have to appeal! We have to decide where S should be educated. Can her needs be met where she is? If not where?
On top of all that, despite it being glaringly obvious S needs a lot more care than your average 5 1/2 year old, we have to wait for someone sat in an office to decide if we can have DLA to help us provide S with more of the things that could improve her life.
Some of these waits will bring even more waiting, some may bring good results some bad but in the meantime we have to trundle along and try to stop anyone making our waits longer, all the while doing everything we can to fight S's corner so she gets the help and support she needs as soon as possible to prevent her needing more and more later on in life.
