How to deal with having a child with special needs

throwawaygirl

It's something that's been coming for a while, but I think I've only now fully accepted that my 2 year old has special needs. The Dr's told us this months ago but I just kept believing that they were wrong and that she would catch up. However, having spent a lot of Christmas with friends and their kids of similar age, it has finally hit me that she is so so far behind. In fact, she is even regressing. I don't know where to go from here. Seeing all of the things that she should be doing but isn't. Realising that we are basically still caring for a baby, when our friends have moved into the toddler stage with their kids. We still have to spoon feed her, hold her bottle for her, carry her everywhere (she cant walk). She doesn't talk, doesn't understand anything we say, doesn't use gestures.
You're probably wondering how I've only realised the problem now...the doctors said she was developmentally delayed, so the word 'delayed' meant to me she would catch up. They tried to tell me that she would never catch up, but with no diagnosis I held on to hope. We still have no diagnosis despite all the tests they've put her through. 
I just feel so so alone. I don't want to meet with friends - I feel angry that they have it so easy. If I hear one more person tell me that I'm lucky she isn't walking because I don't have to run after her, i think I'll scream. I'd give anything for her to walk. It seems so simple for everyone else, I wonder what I did wrong. All the dreams I had for her are over. The thought that she will be stuck in this baby stage forever is killing me. I don't know how to cope with it. It's already so hard right now, but it will only get harder as she gets older. The doctors cant even predict how things will turn out without a diagnosis.
I guess I am just looking on some advise on how to deal with this. I feel alone, but I know there are other parents out there who have gone through this. How on earth do you carry on? I walk around in a daze trying to hold back the tears all day until I can finally go to bed and cry in peace. I cannot carry on like this.

painauchocolat

Hi, you have my full sympathy. I completely understand how you might have been hoping for a "catch up" phase - we all want to hope for the best.

I don't have any practical experience of this personally, but LOTS of people do. And they're out there - find them via Facebook? Ask your public health nurse, maybe? Or a local school might be able to put you in touch with parents who've been through a similar experience.

If it's any reassurance, we have come a long way in helping kids who have additional needs. Schools are much more accommodating and experienced, and other kids are exceptionally kind. (I teach in a school with a lot of sen kids)

If you can at all, try to be proactive. Ask about interventions or exercises that you could be doing at home. Perhaps there are things you could do with the help of a physio or speech therapist? Ensure you're on any lists (for specialists) that you need to be on, and if you have health insurance, see if that can help you gain quicker access.

Very best of luck with it all xxx

farmerwifelet

I know its tough - I was angry and sad and mourned the future I thought my son would have. Get referred to an early intervention team (through GP or PHN) my gp told me son would be grand and would catch up ( he was later diagnosed with ASD). Early intervention team will offer therapy - physio if needed and Occupational and speech therapy. Take anything you are offered. you can pick up loads of practical tips from them. Also if they have a parenting course go to it. Meeting people in the same boat makes such a difference just knowing you are not alone. Hang in there. At this age its very hard to get exact diagnosis as your daughter is so young and it could fall into many categories. Unfortunately a lot of us are on the road less traveled but you are not alone and it is ok to be annoyed at the platitudes people want to help but don't know how.

Big Bag of Chips

"Developmental delay" in itself is a diagnosis that opens the door to early intervention for you, including speech therapy, physiotherapy, occupational therapy. A visit to your PHN is a good place to start as she will have access to all the community services. You can speak to her about what's the next step.

Lisha

My heart breaks for you throwawaygirl. It’s a real kick in the teeth. I know you love your daughter but you are entitled to mourn the future you have now lost.

Im not entitled to give you any advice. All I can offer you is what I’ve learned from other family members who are going through something similar

1. Your daughter is the same child you loved every other day, but now you have a diagnosis thst must be dealt with. This diagnosis will change your life as you know it now but you will learn the new pattern and you will do the best for your child.

2. Only you can fight tooth and bloody nail for what your daughter needs. Be a lioness and rise and roar for what your daughter needs. It will be a case of ‘fake it until you make it’ but only you can fight for her.

3. Be kind to yourself. Take what ever help famiky and friends can offer you. You need time to process this and to grieve for the child you had and then you must gather yourself and fight for whet your daughter needs. But you must look after yourself too.
One family member takes it step by step, literally appointment by appointment.
Your public health nurse and gp are your new best friends.

Please be kind to yourself abd remember others have gone through this and you can too.
I’m not saying it’s easy but you can do this.
Every best wish op.

splinter65

Can’t offer anything I’m afraid except for financial benefits advice.
You should apply for Domicilliary Care Allowance asap.
It’s €309 per month to help you out with all the extra costs associated with a child who needs extra help.
It’s not means tested .
You need to accompany the application form with a letter from yourself about how much extra care your little child needs.
If you need to take some time off from work you can get Carers Benefit which is not means tested.
If your not currently working you can apply for Carers Allowance which brings with it free travel and other benefits.
You sound like a wonderful parent.
Very honest.

One thing I feel I must add is to not lose yourself in this and become “parent of a child with special needs” and lose your own identify. I have seen people lose themselves in this label and you, your partner and your child deserves someone who keeps themselves healthy as well as dealing with this situation. Mind yourself, take time for yourself and spend time with true family and friends that make you feel happy (anyone who says you are lucky she is not walking is not in this category). Get onto your local early intervention team and if you have money get a psychological report privately as soon as possible. Speech and language and OT asap too and if you can afford this privately do this while you are on the public waiting list. Best of luck.

Big Bag of Chips

I think don't be too hard on people who say "you're lucky". It's maybe just a clumsy way of reassuring you that she will catch up with others. If you have had a hard time accepting it and were yourself thinking she would indeed catch up, then you can't blame people who don't live with your child every day to understand the complexities.

I know it's hurtful and upsetting. But try to see that people aren't deliberately trying to hurt or upset you. If it turns out that your child does indeed need a lot of intervention and a lot of extra help as she grows then you will be likely to hear a lot more well meaning, but maybe inappropriate things. This is also something you are going to have to learn to deal with. And learn to separate the well meaning comments from the bitchy ones. I'd like to think that there would be far less bitchy comments than people genuinely trying to help.

Also accept help. If people offer, accept! If people don't offer, don't be afraid to ask. You'll know who your support network are.

bp

Having seen friends go through something similar get in touch for early intervention, hearing tests etc. No speech could be hearing impairment. People don't mean to be insensitive and believe me I try not to be but do put my foot in it with very close friends because I see a child only, not a child with special needs

Cry, give out etc, let all the unfairness out and then plan. Physio, hearing, theraphy for both small movements and big (occupational etc). Don't make things too hard for her as she will get frustrated but start with holding objects and letting her throw, drop etc

shesty

No experience of it either, except seeing a close family member's child, but take care of yourself.I know people don't mean to be hurtful, but yes I'd feel angry too-it's one thing I never say to people because of course you are happy to see your child walk etc.I always was.
I don't know what the diagnosis is/was, but is there a chance she could walk eventually? I know from the family (one parent is a medical person) they worked extremely hard on physio etc to make sure the child could walk/eat/feed/ /communicate as much as possible, because those are the basic things they would need in life.They don't talk either, they use a book with pictures and an ipad, but so much work was put into that, and understanding and movement.My experience of the health services on this is non-existent but I would say contact everyone you can, startinf with your PHN and your GP.Maybe St Michael's house or the CRC (are you in Dublin?) as they may be able to give you good advice as to what services are available to you. I'd also visit the GP for yourself and tell them how you feel.I can only imagine how overwhelming it is, so take your time.

fergal.b

As a parent of a special needs child like yours I know how you feel and it can be tough, a few things to remember , 1 you did nothing wrong and you will be able to cope, facebook has lots of pages like https://www.facebook.com/SpecialNeedsParentsAssociation/ that can offer support and help and are a good place to go if you just want to talk to someone in the same situation. No two children are the same so try not to compare goals, your child has different goals that are unique them so try focusing on that and be just as proud when your child achieves a goal even if it's as small as getting a smile try not to be upset "easy to say I know" but your life is not over it's just taking a different path one that can filled with just as much joy and happiness as anyone's. My son is now 16 and if there was a magic pill that would make him like all other kids he wouldn't be getting it as he is perfect to me just the way he is, my wife has MS so I might give her the magic pill With two wheelchairs in the family it was very hard to get away for a break so I built a wheelchair adapted cruiser and now we spend most weekends on the Shannon living the dream, there is no such thing as the perfect family but if you can be happy together thats as good as it gets nothing else matters. Keep your chin up it will get easier for you.
Wishing you all the best for the new year keep positive and try to enjoy it, your child is beautiful and just needs a bit more help and time for that you will be paid back 10 fold I promise.