Being a parent of special needs kid.

Keep on smiling

Hi there,

I'm the mother of a five year old with autism and ADHD. He is a wonderful child, he is very affectionate and loving (which the psychologists aways remark on). I thank "God" or "a higher power" for him every day. He is our only child, a much wanted child, we were together ten years before he arrived. My husband and I love him so very much.

"Jack" was diagnosed with autism when he was two and half and more recently he has been diagnosed with ADHD. When he was first diagnosed with autism we got a very negative reaction from my husband's family. Jack's grandparents couldn't cope with the idea of having a grandchild with a disability. (I couldn't print the actual words they used). My husband comes from a family of very high achievers, where siblings compete against each other when it comes to jobs, houses etc.) For almost two years we were excluded from family occasions and it was a very painful time for us. I actively encouraged my husband to say in touch with his family so gradually he started to be invited to family occasions again. Our son was admitted to hospital last year with suspected meningitis and this provided a turning point in our relationship with my husband's family. They are back in contact with Jack and I now too. My husband and I are trying our best to forgive and forget, while also educating them about Jack's challenges. (While also highlighting his many talents).

My parents have been supportive but my siblings are very angry with me for having "Jack" assessed and "labelled". My brother and sister believe what I've done is tantamount to abuse. We are in touch but they rescent the decisions taken by my husband and I.

We had Jack assessed as we wanted to help him and in the last three years we have spent almost all our savings on private interventions as access to HSE services in our area is very difficult. Our son is doing really really well and is due to commence a mainstream school with an SNA (if we can get one) in Sept.

I'm so sorry to be so long winded but I'm wondering if other parents have experienced what my family has experienced. I try very hard to be positive, I always try to look at how I can improve things in life generally. I have been studying and attending courses since my son was diagnosed, and I've found that has been very helpful.

At the moment I've hit a rough patch and I'm finding things very stressful - thinks like having to fight with service providers for a crumb of a service. At night I often lie awake for hours worrying about Jack's future, will he be ok, what would happen to him if my husband weren't around etc.

I also miss parts of my old life, I feel that my husband and I have drifted apart a bit, we have fallen into a "caring role" and sometimes I feel our house is not a home but a service facility. I love my husband dearly and I know he loves me but it can be a struggle to find time for each other.

I hope other parents can relate to some of the above. I would be so grateful if others could share their experiences. Thanks

creative11

Sorry to barge in on your thread, as I am not a parent of a child with Autism or ADHD. I am, however, an SNA who has recently finished a job where I cared for a child with both. I loved working with this child, with all the challenges that it presented - for both of us, and I miss him. It is great that he is in mainstream school and he is a popular classmate, with plenty of friends. I hope you get the support services you need so that your son too can enjoy a mainstream school career.
From an SNA point of view, I believe that the NCSE (National Council for Special Education) is adhering very rigidly to their own definition of 'care' needs in giving SNA support - 'care' needs being defined very narrowly - as toileting needs, presenting a danger to self and/or others, and mobility needs. Previously, schools seemed to have been able to stretch the definition of 'care' needs, so that actual needs were being met by the provision of SNA support.
I wish you and your family all the best.

Keep on smiling

Creative11, Thank you so much for taking the time to post. My husband and I met our local SENO recently and we got the distinct impression that she wasn't concerned with our child's educational needs but only wanted to know if he was likely to harm another child etc.

I feel that we are being penalised because our son has made progress because of all the (private) early intervention he has received. I also feel that if our son doesn't have an SNA, other parents will be going to the school complaining that my child is taking up too much class time etc. If I'm honest I can see why a teacher and other parents wouldn't be too impressed. I think there is a feeling (amongst some) that special needs kids belong in special schools.

Have you ever heard of a parent qualifying as an SNA and accompanying their child to school? God, I know it is far from ideal as you want a child to become independent. Also, it is unfair that a parent would even have to consider leaving a paid job to do an unpaid one so their child receives an education.

creative11

The only qualification you need to be an SNA is Junior Cert, although schools now do look for SNA qualifications, which are FETAC accredited, and many of us have done further courses. Of course, many SNAs have higher qualifications. I have not heard of a parent being SNA for their own child, and imagine it would be problematic, given the parent/child bond. Paid SNA jobs have to be advertised, and candidates are interviewed by a panel, and appointed by the Board of Management. I don't know of any unpaid SNAs.

The Dept of Ed policy is towards integration of children with Special Needs into Mainstream education as far as possible, and the EPSEN Act of 2004 is worth looking at (needless to say it has not been implemented, evidence, if it were needed, that Special Needs children have not been a priority for our outgoing government).

Policy is all very well, but schools must be given resources to support all their children. All teachers should be given training in Special Education, and Learning Support, Resource and SNA assistance should be available so that all children receive the education they are entitled to.

BTW, the other parents in the school I worked in have never, ever complained about the time and effort given to the child I cared for. Sure, extra time is given to him, and he has his challenging days, but in the grand scheme of things, (all) the children are receiving a good education - and not just academic. Maybe we all work a little harder, but there is no harm in that. I hope your school can offer you and your family all of this. I am just sorry that parents have to worry and fight on behalf of their children, who, through no fault of their own, need extra help to reach their goals.

CK2010

I'm unsure as to what aspect of your post you wanted to discuss but a few things struck me.

I am a parent but not of a special needs child, however a close family member has been diagnosed with severe autism (and perhaps another undiagnosed condition too, although i honestly could not elaborate on that cause i dont know much about it, sorry). he was diagnosed officially at around 24months and hes 10 now. his parents were advised to do everything you did.

they basically tried a couple of things (including the son-rise suggestions) and never really kept up with them long term. and i think when they didnt see much improvement they gave up this is the ONLY thing i judge (i cant think of a less 'strong' word) them on. and i dont mean that in a disrespectful way i just cant help but wonder if they really did all they could have for him. in a way, i think they didnt accept it until it was too late and then because it was so late the intervention they did take didnt have the effect they had hoped for.he cant talk and he will never attend mainstream school. he is quite violent too. however he is loved dearly, and like i said, the only thing that i would ever think twice about with regards to him is if he really got all the support he needed.

you can say that you've done EVERYTHING you could have done, and i respect you both so much for that because i understand all the effort, time, money and emotional turmoil involved in it.
your siblings may not understand how important it is to actually diagnose ("label") in order to help him. alot of people think 'kids are kids, theres nothing 'wrong' and no need to label them or define them by a diagnoses' but this is so important in assessing what they need in order to help them develop and not regress (in the case of the boy i mentioned above, he was learning to talk etc. as a baby/toddler and had many words and now he can make sounds but not proper words). you, as his parents need to do whats best for him and thats what you're doing.

im glad your husband's family have come round. for some people it just takes time.

as for wanting your old life back and having relationship issues, as a parent of a child without any extra needs i can relate to that, so i can only imagine how it is for two determined parents who devote everything to giving their child the extra support he needs. it makes you human. no matter how much you love your child you'll always have those days where you just wish you could have a day to yourself.
just try to be there for each other and make a point of chatting for a few minutes about stuff that doesnt relate to your boy/bills etc. even if its just something you heard on the radio or whatever. i know that i fall into the trap of constantly discussing our daughter or bills and stuff and thats just making the whole 'feeling like parents instead of a couple' even worse. its such an obvious thing to do but you really dont realise how much you fall into discussing things like that instead of just having light hearted chat!

i know that its difficult to access the hse services you need and it feels like you're constantly fighting your corner and not being heard but there'll always be one person whos willing to actually listen to your argument, you just need to bug all the others til you get to talk to that person!! ive had experiences with grants/social welfare and its a system whereby you need to know your entitlements inside out before they even look at you and ive heard the same with regards to the hse services needed for children with autism. im not comparing the two, obviously, but i have been there with running round in circles repeating yourself to different people and being passed around.

i hope this helps a bit. for what its worth i have a huge amount of respect for you and your partner. it'll all be worth it as you see him progress in school and make friends. not all kids with autism (im aware that theres different scales of the spectrum but still) develop as well as your son so its a testament to the two of you and all you've done for him. it really is.

sorry for rambling on!

Keep on smiling

Thank very much Creative11 for all the info you have provided. I have written to all the election candidates to see if they or their parties are committed to the full implementation of the ESPEN Act 2004, I know in my heart that it's probably a wasted exercise but I feel it is wrong to be complaining about things without making an effort to bring about change. I feel in my bones that when this it was implemented during the "Celtic Tiger Years" it is not going to happen now that we are virtually bankrupt. We live in hope .

With regard to my remark about parents and teachers complaining about the extra time spent on special needs kids, I may not have expressed myself properly. What I meant was it could become an issue where a child doesn't have an SNA. I have to say that "Jack" has a pre-school assistant at the moment and the pre-school leaders and the parents are thrilled to have her. She works with Jack but she also looks out and assists other children. So it is win win for everyone!

Thanks again for taking the time to post and the best of luck to you in the future.

Keep on smiling

CK2010, Thank you very much for your post. You really helped me so much. A trouble shared is a trouble halved as they say. I'm normally a very positive person but on Tuesday when I started the thread I was feeling so low. I really felt at the end of my tether.

I hope that your relative and their family are doing ok now. I note your comments about the child's parents and all I can only say is that I know two other mothers that have probably put in the same or more effort than I have but their sons have not made anything like the same progress Jack has. I do believe in some cases when autism is very severe it can be much much harder to make progress. For one of the mothers I refer to, she went to college to study psychology and special needs education to help her son but after all her effort she was advised by clinicians and teachers that it would be better if she concentrated her efforts on teaching life skills to her child instead of academics.

I do agree as well that some parents can be in denial about the extent of their child's difficulties. As a mother yourself you will understand that their is nothing more painful than seeing your child in pain or distress. You just want to take the pain away for them. In some ways receiving a diagnosis is like a grieving process ad we all process grief in different ways. Some become immersed in it, others try to continue on for a while but it always catches up in the end.

As I said in my first post, I thank God for my son and he really has been a blessing. Now if someone said that to me on the day he was diagnosed I would have probably knocked them out but today I appreciate the progress and in many ways it has been a great learning curve for my husband and I. It certainly makes you appreciate what is important and relevant in life.

Thanks again for your contribution

loadz

Keep on Smiling

We too have a boy who has autism and he is going to mainstream school. He has an SNA in school but it wasn't until after senior infants that he got one. He is doing very well academically but he struggles socially. We are very worried lately as he has started dressing up in girls costumes and we are trying to get him out of it without driving it underground. When he comes home he goes straight into the costumes and would stay in them all day. It is causing tension between us and family as we all have different ideas on how to handle the situation without damaging him emotionally. Hopefully it is just another fad that will pass. We have grand parents also telling us how to handle it and so on and it does cause tension between us. Outside of that he is doing very well but needs to be pushed a little because otherwise he wouldn't go out or want to go anywhere etc.

Keep on smiling

loadz wrote: »

Keep on Smiling

We too have a boy who has autism and he is going to mainstream school. He has an SNA in school but it wasn't until after senior infants that he got one. He is doing very well academically but he struggles socially. We are very worried lately as he has started dressing up in girls costumes and we are trying to get him out of it without driving it underground. When he comes home he goes straight into the costumes and would stay in them all day. It is causing tension between us and family as we all have different ideas on how to handle the situation without damaging him emotionally. Hopefully it is just another fad that will pass. We have grand parents also telling us how to handle it and so on and it does cause tension between us. Outside of that he is doing very well but needs to be pushed a little because otherwise he wouldn't go out or want to go anywhere etc.

Many thanks for your post. PM sent.

cathy01

hi, Its so hard for you to get your head around whats going on with your child, without having to carry the emotions of your family.I fully understand what your talking about.THE FEAR OF THE LABEL. I have been told , there is nothing wrong with my daughter/son, that all kids do that.I dont explain her behaviours anymore, with my son, he needs help with different things and I understand that, my family , well some of them dont. As for getting teh SNA, I have one for both my children as they where classes as a danger to themselves or others. If you need advice contact fingal leader partnership on 01-8020484 and ask fro Sarah McNally.HTH,Cathy

Twiggynomore

At keeponsmiling, I know your post was written years ago, I am just seeing it now.I wanted to know how your son is getting on now in the educational system with regards to supports. Also to say I understand fully where you are coming from, our younger son was diagnosed in 2009 with autism, now 11 years old and it took two years of fighting to get it. He is in mainstream with shared SNA and his allocated resource hours. But am aware of so many children who are not getting their supports and have been signed out of school due to severe anxiety.
The DCA Warriors is a great page full of information and support to parents of children with SN and/or a serious illness. Wasn't sure if you were aware of the page.
Take care

CiDeRmAn

I would say it is unlikely that the user is still monitoring this thread, given its age.
I might suggest you pm the author and ask your question there, rather than resurrect a 5 year old thread.
Alternatively, start a new thread on the topic that concerns you, you are bound to get replies and suggestions.