Well, When we got our daughters diagnosis, I was in a bit of a blur and I actually did not digest the magnitude of what the doctor was saying. When she said she would have some learning difficulties I translated that to mean possible dyslexia or just take a bit longer to learn things – so I breathed a sigh of relief and made a mental plan of what I would do to help her.
At 9 months old I would start her alphabet, counting, times tables, reading – NOW.I was disillusioned and for a while I was coping with the idea that things may be just a little harder. At this point there was nothing you could see that made her different. So her disability was hidden. But as time went on and milestones didn’t materialise within time frames (Sitting, crawling, rolling, babbling imitation etc) I started to slowly realise how things were different.
My anger returned and I felt lost and hopeless. I scoured the internet for an idea of what to do but did not know where to start, what to look for. So now I can look back retrospectively and think and this is what I would say to myself if I had a time machine and could go back!
- Start Private Physio Therapy – NOW. Our daughter didn’t start physio until she was over a year old, at this time she was only managing to sit – no crawling, tummy time, rolling. We were just waiting and being passed from person to person. GP to Doctor, to Health visitor to Portage. It may seem expensive (Sessions can cost anything from £150, assessment and £70-£90 per session) but if you can afford an initial outlay, just having their input at this early stage could help your child IMMENSELY. Private physio is one on one help. For at least an hour. You will be hard pressed to get this level of service on the NHS. You will see the same physio and they will learn your child inside out. If you can invest in this, even for a short time, I implore you to try!
- Go to your GP and demand they make a referrel to NHS physio as soon as you know you child may need extra help. NHS Physio took over 6 months to give our daughter an assessment, and then a further 3 months until she received group therapy. She was 1year and 9 months (approx).
- Try and visit the same GP all the time – now I don’t know if you were like me, growing up I had the same GP. Now when I go to the doctors I see a new one each time I go in! This makes it extremely hard for them to build a relationship and understanding of your child. And you need this definitely.
- Apply for DLA – Get some help. We forked out for private physio out of our savings (Savings intended to buy a house!) and eventually applied for DLA. But I wish we had this help earlier so we could have maybe tried other therapies earlier for her.
- If money is no problem – see an Occupational Therapist too, they can advise and help with many practical things that will make your life and your child’s so much easier. Waiting to get on the NHS can be long, and you might not get many sessions. But is so so important! (See my top OT activities)
- Check out to see if you have Portage in your area – if so, make contact. Portage workers are like guardian angels who come to your home and play a whole host of activities which are educational to help you and your child. They are an invaluable source of information and support. Being a parent to a child with extra needs comes with a host of questions, uncertainties and challenges and these workers are amazing to have helping you along the way! (Can you tell I am an advocate of their work!)
NB: If you do not have Portage in your area – You need to (When you have time!) write to your council and MP and demand them!
- Buy a diary – For appointments – this is when you morph from mummy/daddy in to PA. You will have appointments and meeting coming out of your ears. It is easy to get overwhelmed and want to curl up on the floor with a pack of biscuits and Netflix – BUT, instead you will have to soldier through a lot of activity – so get prepared, and you will feel more in control.
- Take your child out – go to your children centre/s and get activity as a main part of your lifestyle. This will help you and help your child immeasurably. These activities do not have to be for children with additional needs, if its suitable and you feel comfortable go to everything you can. The stimulation, interaction, information you will get will help both of you.
- Stop looking at developmental milestones. This is a hard one. But I only occasionally read about developmental information because the way I look at it, I have been blessed with a unique child and as such she should be treated uniquely (Condition or no condition!). She is one of a kind so how can I read information on how she could turn out or when this should happen! I want my daughter to be an individual and be confident in her abilities and so, I refuse to let literature seep into my consciousness and place limitations upon us.
- Celebrate and log achievements – however small, these are the things that will keep you going. This helps to make all the pain and worrying worth it. It will also be great to share with your child in the future so they understand how much of a warrior they are.
What would you add to the list? Let me know!