Today has been tough….i had to face the reality that one of my girls is going to need a lot of extra work and attention if she is to begin to speak , eat and move properly. My little brown eyed girl Ruby…
Of course it isn't the end of the world….i know that and i knew this moment was coming because fortunately or unfortunately i have had training in children's development and i knew she wasn't meeting many of the usual milestones…but it's different when your Mum isn't it? You want to believe your children are still perfect…that you are just reading too much into things. But i wasn't. Ruby needs extra support to grow and learn skills her sister already achieves easily.
Today the twins attended a clinic at the local child and family health service for their 18 month old review (although they are now 21 months…waiting lists!). It was attended by the speech therapist and phyisotherapist and the girls basically played and interacted with us in a large room set up with equipment and toys. It was a very thorough screening and i was really impressed.
The outcome is that Tara is meeting her milestones well across all the developmental areas…..Ruby is not. Ruby still only speaks 3 words….Mum, Daddy and mum mums(yum yums for food) and they are spoken only rarely.
She continues to have feeding issues which stem from before she was 12 months old and had severe reflux and gag and vomit issues. She continues to be very sensory sensitive and there are whispers of autism spectrum (although too early to go there).
As a parent, i can't help but feel i have failed somehow when i look into those big brown eyes or hear her beautiful laugh. I know that's not true, but still, my heart feels a little broken as i sit here tonight and i think of all that is ahead for her.
I know that having developmental delays is nothing compared to what many families of special needs children cope with on a daily basis but for me, for my family right at this moment….it is significant and hard to hear. After all, my kid's are perfect….as any parent will tell you about their children!(Even though we know it isn't true).
What concerns me is not the referrals to the occupational therapist, feeding clinic, paediatrician and early intervention services…it is the fact that she is a twin and this makes things a little trickier.
Today i heard a lot about having to attend all these extra services (which we are lucky to have i know) with Ruby…but not Tara. I have to ensure that these sessions are only attended with Ruby so that i can focus on her. I get that…..but i also have another child and no family living close by, what am i meant to do with Tara? Apparently she can go to daycare on these days while i focus on Ruby.
Now i begin to have a slight panic attack….i don't want to just drop Tara off on her own to daycare while i attend appointments with Ruby…do they not understand the implications of this? Is this how it's going to be now? Focus on one twin but not the other?
I'm scared….i don't know how to work this with twins….what if Tara is ready for school but not Ruby? What if Ruby is continually compared to her twin as she goes through life? What if i did something different with them both and hindered Ruby's progress? These are the irrational yet real thoughts of a Mum trying to look ahead and comprehend what i heard today.
Although i have been complaining about my other half beginning night shift I'm now thinking someone was actually looking out for us because it means Tara can stay home with Daddy during times i need to attend appointments with Ruby. Truly a blessing as i can't begin to imagine dropping Tara to daycare and sauntering off with her sister!
So not all doom and gloom and i also know that it helps to have had training in this area so i can support Ruby the best i can….this is the reason we already do so many sensory activities. I'll probably be writing a little more about the activities we do in this area now and i have been stepping up my endeavours to search for the information and inspiration of others regarding delayed speech, feeding difficulties and sensory sensitivities.
There are some fantastic pinboards on Pinterest which i am finding very helpful at the moment…perhaps they have something that might interest you too.
http://pinterest.com/JeweledRose/sensoryplay-ideas/
http://pinterest.com/pediastaff/
http://pinterest.com/mamasmiles/sensory-activities-for-kids/
I will be adding some more focused pins in these areas to my boards too if you want to bookmark…
http://pinterest.com/jodieclarke/
There are many more and a number of blogs that i will also highlight in a future post. If anyone has a blog or pinterest board they would like to share covering the areas of speech, eating difficulties, sensory activities or twins going through something similar, please add the links in the comments section.
Thanks for reading if you made it this far…bit of a self indulgent post tonight but i really needed to just sift through some thoughts. Time to pull the shoulders back and begin to wade into the unknown…I know Tara, Miss Teen and His Patient Self will all help and support Ruby and i as we embark on this journey…wish us luck!
My heart goes out to you Jode. Ruby is lucky to have a clearly amazingly loving family. Your twins are such happy beautiful little girls xx
((((((((((((Jode)))))))))) As a parent of a child with mild/moderate special needs (who is now grown, married and an expectant father!), I can sympathize with your situation. While the twin issue is unique to your experience, I do understand the difficulty surrounding a diagnosis that stung…. This time of focussed attention on Ruby will be a very good thing for both girls as they will have opportunities to establish themselves as unique and independent individuals but not lose their special twin status 🙂 Ruby may have some special needs, but she IS perfect and who she is meant to be!
Hugs to you as you navigate the services to help Ruby and remember to ASK for support! It IS available if you reach out and ask. It makes ALL the difference in the world 🙂 You are such a good Mama to be seeking help for her and providing such stimulating activities for your babies 🙂 Hugs,
Thanks so much for your beautiful words of support…they really were like a hug to me!
You have some wise words indeed and i shall take away that i need to ask for support…it has always been a hard one for me!
I just love ‘she is who she is meant to be’….thank you so much for that xxxx
Love to you, Jode! You are a fabulous Mom, and you’re right when you say that it’s not your fault. I’m glad that you have the resources and lots of information in blogs and pinterest boards to help along the way.
Oh, being a mama is the hardest thing – I’m learning this myself! “little home in the country” said it better than I could, so I will echo her thoughts. Ruby is meant to be just as she is, and you are meant to be her mama – this is so very clear, dear Jode.
Take good care,
Jaime
Thanks for such lovely thoughts and words Jaime….i really thought your comment about being ‘meant to be her mama’ was just so special and of course true…i hadn’t thought of it that way….thank you so much xxx (i would have replied via email to make sure you received my thanks but you have a no reply email address did you know?)
I have no idea about the email, lol. I’ll have to try and figure that out. Thanks for letting me know, Jode!
I think it is something to do with your blogger settings Jaime, you have to allow your email addy for comments or something…i can’t remember how i checked mine sorry!!!
While I was reading this I was thinking to myself ‘not pefect in whose eyes?’ It must be so very hard being told your gorgeous little girl will face developement difficulties but it doesn’t make her any less perfect than she already is Jode 🙂 I know there will be testing times ahead for you all and I hope it all goes smoothly. Both your girls, infact your oldest too are so very lucky to have you as their mum.
x
I am a news subscriber but have spend the last couple of days looking through sites for ideas of what to do with my toddler (as I am no good at ideas so need inspiration). I loved your blog so I subscribed. I saw the title of this blog post and thought it wwas going to be light hearted and as I started to read my heart went out to you. You have a great attitide and Ruby is so lucky to have you and your background knowldge that has helped identify this early so you can take steps for it to not have a long term effect (in a bad way). My thoughts are with you and your family and I wish you all the best.
Thanks so much for taking an interest in my blog Katrina and for your lovely supportive words!I hope you get some toddler fun ideas from other less serious posts of mine!
Oh Jode I don’t know what to say. Some of your other readers have said such beautiful things. I think they are right – you are the right mother for her. You are getting her the help she needs now, and the outcomes of doing that are always so much better than denying a problem. I can only imagine how diffiult the childcare issue will be. But, you have two special little girls both wonderfully and perfectly made.
Thank you so much…all this lovely support from my blogging friends has really lifted my spirits!xx
I got some great advice when I was faced with a list of my child’s “needs.” I thought of the spectrum of worse case scenerios and misdiagnosis’. Bottom line- love her and continue to challenge her and never let someone else set her limits for her or you! Although it is very hard, try not to focus so much on the timing as the actual milestone. As for the upcoming appointments, maybe some of them could be presented as dates with mommy/ daddy?
Thanks so much for stopping by and commenting…such wise words and i really took onboard your suggestions…you are so right and i am going to shift my mindset a little now!I was suddenly getting caught up on timing when i hadn’t been before…thankyou xx
Jode I am yet to be blessed with children so I have no wise words for you like many of the other comments. What I will say though is that I am amazed every day at all the great stuff you do with the girls. They are so lucky to have you so focused on their developement. Don’t put too much pressure on yourself, it will all be ok in the end.
Jode you are such a wonderful Mum, understanding, compassionate and thoughtful, they are so lucky to have you as their Mum. Your little girl will always be perfect and with all your knowledge and support you will be there to give her every opportunity she needs to grow into the special girl she is meant to be. xx
(((Hugs))) for you Jode. I’m so sorry to hear how you’re hurting. At 25 months, my son was saying even less words than Ruby is at 21 months (Mama, Dada, and “da” for everything else). He was diagnosed with possible verbal dyspraxia. I was devistated with the diagnosis so I really feel for you. Suddenly your child’s life stretches out before you and it looks like it will be such a tough road for them and you do feel guilt, however irrational that might be. I can understand why the twin factor is a worry for you but perhaps it is a reall blessing for Ruby. The girls will share a very special bond no matter what their life brings them, and Ruby will have a very special allie her entire life. Her sister will be her champion and you can foster that. Ruby will never have to feel isolated or alone because she has Tara. The other positive in all of this is that Ruby has been diagnosed early. Early intervention is key, and together with the obvious love and support that surrounds her, Ruby is sure to do well.
Thanks for your empathy and wonderfully wise words Ness and for sharing your son’s experience!It is tough but i know you are right about the bond between the girls being an absolute blessing…i see the evidence every day now that i am looking in that direction! xx
You can do this! Autism is hard, but it comes with wonderful blessings as well. My husband and I, and our two kids, are all autistic. My daughter was completely non-verbal at 20 months and is now at the top of her class. I have a friend whose son was non-verbal and very low-functioning at Ruby’s age and who is quirky but thriving now. No one who didn’t know him then can believe how far he has come and what his life used to be like.
I can’t share empathy with you on the difficulty of this possible diagnosis as, being autistic myself, I simply expected it. But I can assure you that the sky is the limit for your precious one, especially since she has a built-in speech and behavioral therapist in her twin sister. The bond they share, and the continual exposure to another child, will be the best possible thing for her.
Good luck!
Thanks for your lovely kind words Jenni…they really have meant so much to me and i really appreciate you sharing so much of your family experiences! You have left me feeling so positive….thank you so much xxx
Thanks for your blog! I came across it on Pinterest and after reading this post, I feel I am in the same boat! My daughter is 2.5 and is seeing a speech therapist and a behavior specialist.. her speech was compared to that of a 10 month old by Early Intervention.. and she ALSO had vomiting issues at the beginning of this year so feeding is a huge issue (as well as bedtime – this was when she was vomiting!). They also think she may have a sensory issue. Can’t wait to keep reading your blog….
Thanks for dropping by Janelle! The uncertainty of what is going on with them is hard isn’t it? I’m working on a post about Ruby’s speech now so hopefully that may have some tips for you although i am sure you have heard it all through the therapist anyway…sometimes good to hear another parent’s perspective though too i think. So sorry you are having to cope with so much…you are certainly not alone though…sending you big hugs and much patience xxx
I have boy/girl 6 year old twins. My son is developmentaly delayed (he has a form of CP and needs all of the therapies your daughter does…) and his twin sister has met every milestone right on time if not early.
I never thought that I could have twins of different ages – but I do. My son is just now (yippy!!!) becoming interested in coloring while my daughter is reading. He gets scared from loud noises and wore headphones (no sound) at a basketball game that they went to yesterday. But – he is happy, and sweet, and silly, and continually makes progress! Progress counts for so much more than I ever realized.
Thank you for sharing your thoughts on this – as a twin mums we have so much more to consider than mums of regular siblings.
And my fear was also that she would start Kindergarten and he wouldn’t be ready – but guess what? He was placed (he has an educational plan through the school system that we all work on together) in his sisters mainstream classroom and he is doing SO WELL! Sometimes we avoid the really hard challenges because we want to protect them from the frustrations – but this time – he has met that challenge head on… Yeah!
Wow – I guess I had a lot to get off my chest. Thanks for listening!
Thanks so much for leaving your comment Allison…it is so nice to hear another twin Mummy talk about many of the things i fear and that unique experience of having 2 at different stages. I’m so glad to hear how well your little ones are doing even though they are still at different places…thanks so much for sharing…we do have an extra set of challenges with twins so it was wonderful to hear i am not alone xx
Thanks for your blog post! I am a Mom of a 3.5 yr old son and 7 month old twin daughters. My son has some developmental delays and we just started the process with all the professionals (therapists and such) and it has been a hard few months coming to terms that what I have done as a stay at home Mom just isn’t enough for him. I wish I would have addressed some of movie issues a long time ago but I’m relieved we are finally on a good path to help my little Mason out. His speech was our main concern was speech but now we see he needs much more than that. I have gone through emotions of blaming myself for getting pregnant (very surprised by twins!) because it could have been a more focused time on my son and I always wonder if my pregnancy and new babies being born made Mason a little more delayed. I will never know but reading your blog has made me much more positive seeing that Ruby is progressing so well 6 months after this original post. Thanks again!!
Glad I found this! I have two toddlers who are nearly twins at 7 weeks apart (one bio, one adopted). My 19-month-old bio boy has developmental delays. He can’t chew food and gags on thick or lumpy food or even on puffs. He just lets the puffs melt and swallows them, and he doesn’t like mum mums. His therapy for eating is not working, and he is starting therapies for fine motor skills and speech.