Special needs mom journey

The start of being a special needs mom

In the past year I have officially acquired the title of special needs mom (or mum depending where you are) and I thought it was about time I updated you all on what has been going on.  I have called this post the start of being a special needs mom, but of course that actually started the minute my little love was born; I just didn’t know it then.  By the way I am just at the beginning of my learning about all of this so if I use the wrong language then bear with me, but do feel free to let me know.

The start of our special needs journey

If you are a regular reader you will know that since our twins were small we have had concerns about one of their development.  I don’t use their names online so lets call her ‘twin one’ for the purposes of this…

special needs mom life

So twin one always developed more slowly than her sister. She was slightly late to wave, to crawl, to stand and to walk, but it was always within the realms of ‘normal’ so no one was really concerned, but we were watchful.  It was when talking came into play that we really first suspected that she may have some form of developmental delay.  We raised it and were repeatedly dismissed by healthcare professionals who felt we were just comparing her to her twin and that she was making progress so it was ok.  We knew it wasn’t ok!  So we started private speech therapy and carried on from there.

Potty training was the next red flag as it was the longest and hardest process ever.  Remember twin one was the fourth child I had potty trained so I considered myself to be quite skilled at nailing this by this point, but with twin one it just went on and on and on.  I knew then that there was something that was almost preventing her from learning this.  I suspected it was a sensory issue or an inability to deal with transition that meant she didn’t notice or just ignored the physical cues that she needed to wee.

By the time we were approaching her starting school I was back at the doctors asking for referrals to speech therapy and developmental paediatricians.  At this point it was noticed that she had glue ear and it was affecting her hearing which was contributing to her speech delay and so once that was fixed she made some great leaps forward with speech.  The developmental paediatrician discharged her again though and didn’t think that there was anything to worry about.  I was not convinced.

Starting school with unidentified special needs

Now came school and that is when we really saw problems develop for her.  The school reported that she would go to ground if asked to do things, she would have full on tantrums where she would kick and scream and seemed in great distress.  In short the first half term at school was a bit of a nightmare.   It was made more confusing by the fact that we did not see any of this behaviour at home.  After a while it all seemed to calm down and the school gave her access to play therapy which definitely helped her, but then came lockdown and months of her being at home when none of these issues were evident.

So fast forward to September 2020 when they properly returned to school and I first really began to think of my self as being a special needs mom.  Her learning seemed to be going ok and she seemed (to me at least) to be handling being back at school well, but then the Senco asked for permission to refer her to the Educational Psychologist.  I must admit at that point I totally freaked out… I knew that meant they thought there was something else going on and so I was worried.  Until that point I was probably slightly in denial.  So whilst I sought help and accepted that there were some difficulties for her I wasn’t ready to admit that perhaps this was something that couldn’t be ‘fixed’

Hearing those words…  Have you heard of ASD?

The meeting with Ed Psych was overwhelming as although Autism or some Neuro Divergence was always on my mind, this was the first time that any professional had ever said she could be Neuro Divergent.  I felt shocked and upset.  Honestly I was reeling for a couple of days.

I was upset, not because she may be autistic as I know full well this doesn’t change your love for the child or how amazing they are.  My god son is autistic and he didn’t stop being funny, sweet and his perfect self just because of a diagnosis.  In fact since he was diagnosed his life has been transformed as he has been able to access the support he needs to be who he is, to be happy and to achieve his potential.  So I knew that it was far from the end of the world, but….

I did cry.  I cried a lot that first day.  I cried because I know that the world is harder for those who are neuro divergent.  I cried because I know that neuro typical society expects conformity and that would be hard and potentially exhausting for my daughter to achieve.  I cried because I didn’t want anyone to be forcing her to be someone that she is not.  I cried because I knew she must have been feeling confused and overwhelmed and I cried because I knew (from seeing my best friends go through it) that the special needs mom and special needs family journey was a tricky one where you had to fight and fight to get your child what they should just be entitled to.

Moving forward on my journey as a special needs mom

I have been lucky I have friends who have already negotiated this path as a special needs mom so I can talk to them, get advice and benefit from all the hard work they have done.

I have been lucky in that my daughter’s school have been nothing but supportive.  They are bending over backwards to help her and enable her to achieve her potential as much as they without any funding.  They have arranged for her to attend a special need school once a week to support her with her emotional and social needs and it is making such a difference to her anxiety levels and ability to make and maintain friendships.

I have cried so much.  Since March 2021 my little girl began to find school completely too much.  The school said they were simply managing her rather than teaching her as her emotional outbursts and stress levels were sky high.

I was so stressed when she was at school as I was always waiting for a call to say she had lashed out again.  It was really distressing to be sending her into school as a happy little girl and then hearing how desperately upset and angry she was during the day.  Let’s be clear I don’t blame her school for this.  It is the most wonderful school and they were as upset as I was to see twin one in this state of overwhelm.

Over the past 9 or so months school have adjusted things for twin one and we have implemented a new way of her entering school and handling the transitions between break times and lessons.  We have also started speech therapy again, but with a real focus on ability to communicate and emotional awareness.  In addition I now have her at home one morning a week to do some 1:1 learning with her.

special needs system

We are awaiting her assessment and hope to have the appointment within the next couple of months, but even getting to that point has been a battle as the paeds team still didn’t want to see her despite all the mounting evidence that she was struggling so very much.

The future as a special needs mom

I need to learn as much as I can about the additional needs that my daughter has and I am spending hours reading around the subjects of emotional and social development as this is specifically where her difficulties seem to lie.

I feel like I have already learnt so much about this special needs mom life, but I know this is just the beginning and I need to be ready for the future.  So far I have learnt:

  • I need to be a lion for her – there is a fight to be fought here.
  • The UK system for securing help for your child with special needs is deeply flawed
    • needing help isn’t enough to get it
    • you need to always give the information to the authority and medical teams as the worst case scenario.  You have to focus on the negative and the things your child can’t do or no one will help
    • the education authority starts from a position of ‘NO’
  • Sadly it seems that a child needs to be failing and be at rock bottom before funding can be secured
    • the school has to demonstrate that they are spending more than £6k per year supporting a child and that they need help beyond that before the council will step in
    • they will not count the fact that I spend £85 per week on speech therapy as the NHS does not cover what she needs in the £6k benchmark
    • they will not count the hours that I give in home schooling twin one because she needs that 1:1 support and the school (through no fault of their own) cannot give it
  • I am likely to always have to go to battle for her until she is no longer in education
  • I am deeply lucky to have a supportive bestie who has navigated this path in front of me and is beyond helpful with advice and is an inspiration to me as I see how much her actions have helped her own son
  • I will have more days where I cry because things are difficult for her
  • Special or additional needs don’t only affect the child who has them.  The whole family needs to adapt and the other children are affected even if its just a perception that twin one gets more attention
  • We are very lucky to have a supportive family who have helped with logistics of getting twin one to her special needs school
  • Even if we get a diagnosis we will still need to battle for help and support for our lovely girl

The biggest lesson I have learnt so far is that she wouldn’t be who she is if she didn’t have her additional needs and so even though the path is uncertain and we have difficult days she doesn’t need to be ‘fixed’ or changed.  She might need the world around her to be less rigid and more accepting of difference and she may not get that, but she will always get all the love and support she needs from all of us and especially from me her special needs mom.

 

16 thoughts on “The start of being a special needs mom”

  1. Gillian Scarlett

    Oh Kirsty. I’ve had a good weep reading your story even though I knew some of it but having known you since you were hours old I know that your precious child has someone who will fight tooth and nail for her. Thank goodness she has you and I feel for others who can’t navigate the path to access help for their child. You are doing a great job and I’m pleased you have the support of a good friend. Sending you lots of love Gill xx

  2. Sending a big hug your way. I’m glad that you have now had confirmation that your daughter is neuro-divergent so that support can be put in place for her and that her school is so supportive but I am sorry that you have to fight so hard at times for her to get the support that she needs. Being a special needs mom is a huge rollercoaster ride and it is so hard when there are often so many battles to fight. It’s good that you have your bestie and a supportive family to help you on your journey. Wishing you and your family all the best for the road ahead. Much love to you all x #MischiefandMemories

    1. We are still awaiting a formal diagnosis, but all the signs and the professionals we have engaged with are pointing that way. It feels wrong that any parent should have to struggle to get support and I know I am no different from so many others and many have children needing far more support than my daughter and still are not getting it. Thanks so much for your kind thoughts Kxx

  3. Sucks. There is nothing worse than that feeling of helplessness when all you want to do is take away their problems and their stress and make everything better but obviously can’t. Wishing you nothing but the best going forward. #mischeifandmemories

  4. I have a child with special needs in the US. Think of yourself as advocating for your child, not fighting. I have seem some special needs parents alienate the professionals who can most help their child by “fighting”. Saying “what do I need to do to achieve xxx (this goal)” may be more productive than demanding and threatening. In the end socialization is extremely beneficial to children, and as parents we do change our children from dependent babies to (hopefully) functional adults. Best of luck with your daughter and family.

    1. That is definitely good advice thank you x. I think I say fight because the council make everything a battle. It seems that they rarely agree to any funding without being taken to court and that is not something I want to have to do. Fortunately my children’s school is very supportive and I feel like we are all on the same side so I can ask for advice and have productive conversations. The educational welfare officer is equally helpful and constructive as are the mental health team. It is those in charge of the purse strings who are not 🙂 #MischiefandMemories

  5. Shelley Whittaker

    Bless you Kirsty and thanks for sharing your journey. I have had a tough time with my daughter recently with the move to Australia. She has been acting out as everything is different and I assume she doesn’t feel very safe. Needless to say, she has been very attached to me also as I am her constant amongst all the change. Its been a tiring and testing time for us as a family, so I can only imagine how you are feeling about the challenges facing your daughter and your family. One thing is for sure, she is very lucky to have you as her mummy! Take care x #MischiefandMemories

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